Tag Archive for: cancer

Cancer Prognosis: A Numbers Game?

I am living past my expiration date!

Cancer, it would appear, is a numbers game. From the minute each of us receive a diagnosis, we are assaulted with numbers: blood counts, enzymes, proteins, ratios, antigens, mutations and on and on. The numbers can be bewildering and many of us often struggle to wrap our minds around what all of the numbers mean. Quite often, the most daunting number that we encounter is the one related to the median survival from diagnosis. This is the number that I affectionately call the “expiration date.”

We are all familiar with expiration dates because we see so many of them plastered on consumer goods. They are guides to when products are best sold by or consumed by and most of us pay them at least a bit of heed. C’mon… When presented with two cartons of milk, you know that you are going to pick the one with the extra day or two of shelf life, right? But what about the stuff that is already in your fridge? It may be a day or two past its expiration date, but it looks and smells good. And so you drink it because it’s just fine, right? Those expiration dates on the vitamins? Just a guide. Expiration dates on medicine? Most of what is known about drug expiration dates comes from a study conducted by the US Food and Drug Administration at the request of the military. With a large and expensive stockpile of drugs, the military faced tossing out and replacing its drugs every few years. What they found from the study is 90% of more than 100 drugs, both prescription and over-the-counter, were perfectly good to use even 15 years after the expiration date. Turns out, these numbers are not quite the final arbiters of quality that we expect. So what about the expiration dates that cancer patients encounter on their own lives?

Our expiration dates are averages based upon data in the past up to a certain point. They represent a probability of likely average outcome based upon what the medical community knew, factually, up until the point in time represented by the actual data. The expiration dates do not take into account the day by day advances in cancer research and treatment. Further, they do not take into account the individual responses to treatment. Let’s face it: some of us don’t live in the middle of the bell curve from which averages are derived. In all candor, those expiration dates will likely have absolutely nothing to do with your own particular, individual situation. I know that they do not apply to me because I am now, officially past my expiration date.

I was that Type A guy who scoured the Internet in search of data, research and numbers when I got my diagnosis. I was horrified to learn that I was not expected to live to see my grandchildren be born or see my home getting paid off. The numbers were ugly and mean and knocked me off of my game. And they were also wrong. It took me a long time to understand that many of the numbers we deal with only look toward the past because they cannot know the future. And even though my marvelous cancer specialist went to great lengths to tell me to ignore the numbers, to know that I was very likely not going to die from this because we are learning so much, so fast… I stared at the expiration date. Now I am past that date and I am liberated.

In a few weeks I will be back at the hospital for my annual work up. I’m a little grayer. I’m beginning to embrace my inner curmudgeon and I am becoming somewhat set in my ways (the cats must get their treats while I am sitting in my chair at 5:00pm while turning on the local evening news). But I am also past my expiration date. The numbers were wrong. And I get to smile. A lot. In a few short months I will pay off that mortgage. And I know that I will get to welcome my grandchildren into this wonderful world. Even though neither of my daughters are married. Yet!

Targeted Therapies: What does it all mean?

When my kids were little, I loved reading to them Arnold Lobel’s Frog and Toad books including “The Corner” in Frog and Toad All Year. In it, Frog assures Toad on a cold, rainy day that spring is just around the corner. Frog says that when he was younger, on a similar cold, rainy day, he searched for spring around many corners until he eventually found it-sunshine and flowers-around the corner of his house.

And so it is with us cancer patients, constantly peering around every corner for the still elusive cure. Researchers at ASCO 2015 offered the most encouraging, hopeful news yet that we won’t have to look around the corner much longer.

Or will we?

Cancer is a tricky disease, in fact many tricky diseases, constantly morphing and exploiting loopholes to outwit us. The buzzwords at this year’s annual meeting in Chicago included “immunotherapy,” combination therapy and “biomarkers.” Immunotherapy has become the fourth arm to battle cancer, after surgery, chemotherapy and radiation. On the upside, scientists are making great strides to develop ways for the body’s immune system to fight the cancer. These are called checkpoint inhibitors. Inhibitors basically release the brakes in cells to allow our immune systems to charge and attack the bad guys, e.g. cancer cells. And since the cancer is being attacked at a molecular level, this should work for everyone. But it doesn’t. And that has proved vexing to researchers. Every specialist with whom PEN spoke at ASCO – from melanoma to lung and prostate cancer to colorectal disease – acknowledges that they don’t yet know why the inhibitors aren’t working for all of us.

That’s where the biomarkers come in. Researchers are working to identify specific markers on an individual’s cell to determine if a specific anti-PD1 or

PD-L1 inhibitor will work on a patient. Or why it won’t work.

For my cancer Chronic Lymphocytic Leukemia, CLL, combination therapy made headline news at ASCO. Through clinical trials, scientists have found that combining a checkpoint inhibitor, Ibrutinib, with a standard chemotherapy called bendamustine along with the monoclonal antibody Rituxan yielded an 80% response rate. That’s a “wow,” but it still isn’t 100%. What is it about the 20% that their bodies resisted the combo therapy?

Maybe the key to unlock the mystery lies with genetics. On the last day of the conference, ASCO announced a joint effort with the NCI, National Cancer Institute, to conduct basket trials. These trials group patients together with specific genetic mutations in a patient’s tumor rather than the location of the tumor. So a prostate cancer patient may achieve complete remission or, dare we say, cure by being treated with a drug developed for breast cancer because of the same genetic mutation found in both.

Will that be the magic bullet that cures cancer? I am optimistic that the answer is just around the corner.

Immuno-Oncology – The Challenging Road Ahead

Experts say there is tremendous promise in stimulating a patient’s own immune system to fight their cancer. A few new drugs are already on the market in this area for conditions like advanced melanoma and some subtypes of lung cancer. We have a town meeting discussing this for lung cancer on March 7th in Tampa and a melanoma one on March 28th in Phoenix. In blood cancers, hematologists also see great promise for this approach as we heard from many at the recent American Society of Hematology meeting. And, earlier, Dr. Oliver Press spoke to me about it in lymphoma. But there’s a caution just now: even when  experts say they are “excited,” it can be a rough go for patients.

As you may know, as doctors are testing out a new approach like immuno-oncology, they conduct clinical trials. Many trials are designed for the sickest people where their other options have run out. I have a dear friend in Seattle in exactly that situation. He has diffuse large B-cell lymphoma, and there is a trial of chimeric antigen receptor T-cell (CART) for his condition. He hopes to start participating soon. But like other patients who benefited in chronic lymphocyttic leukemia (CLL), at this point, he is very very sick and debilitated from months of chemo and a stem cell transplant that didn’t last. Our prayer is that he will enter the trial, and miraculously his T cells can be marshaled to finally fight his cancer.

 This is nothing like taking a pill to fight a sinus infection. These days the patients in these trials are at very low points. Of course, the researchers are hoping to prove safety and effectiveness and see immuno-oncology approaches used much earlier  in the course of a disease for greater benefit. That often happens with new cancer approaches. But today—as immuno-oncology is being studied for a broader range of conditions—many of the patients are very sick, like my friend, and it is their last hope. In my friend’s case, he is now facing additional chemo, so he can qualify for the trial. The journey has been incredibly tough, and we need to be reminded of that.

 I am a big proponent of clinical trials. I believe participating in one in 2000 for CLL saved my life. Fortunately, that one was for previously untreated patients, so I was feeling pretty strong at the outset. But many other trials are for people who have tried everything else. I pray this new approach to cancer treatment works for them, and they can make a solid turn toward strength and better health. I believe immuno-oncology will work out, as it has already for some people with melanoma and lung cancer. And when it does, we will have to thank some very sick patients who faced a bumpy road to make progress real for the rest of us.

I welcome your comments.

Wishing you and your family the best of health!


Spotlight on LUNGevity: Cancer and Stress

(Editor’s Note: LUNGevity is one of our esteemed partners. This leading organization has for mission to make “an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.”)

Stress affects all of us in one way or another. By definition, stress is a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.

A new year presents new challenges for people on top of everyday stressors. Whatever your life challenges are, there are ways to manage your stress so that it doesn’t become harmful to your health. This is especially important for those of us who have had cancer.

Some experts say that is the link between cancer and stress—if stress decreases the body’s ability to fight disease, it loses the ability to kill cancer cells.

Stress doesn’t only make us feel awful emotionally,” says Jay Winner, MD, author of “Take the Stress Out of Your Life” and director of the Stress Management Program for Sansum Clinic in Santa Barbara, Calif. “It can also exacerbate just about any health condition you can think of.”

Stress may worsen or increase risk of obesity, diabetes, headaches, depression and heart disease as well. People fighting cancer may feel stress about what their bodies are going through, what their families are going through, uncertainty about cancer treatment, financial and emotional concerns.

Here are 5 things people who have had or are living with cancer can do to reduce their stress.

1)     Get Informed

Becoming well educated about your health conditions, treatment options and symptom management may reduce stress. While too much information may feel overwhelming to some, knowing your disease, recognizing your symptoms and where to get help for your side effects may help you feel more secure and supported in your cancer treatment.

2)     Express Yourself

Talk about how you’re feeling. Join a support group. Talk to family members and friends. For some who aren’t great talkers—write about your feelings in a journal or express yourself in artistic ways. Expressing to others about how you’re feeling may reduce tension and stress

3)     Get Moving

Exercise can help reduce stress. Activities such as walking can also help to relieve pent-up energy. For those who have physical limitations, light movement of arms and body can also help with circulation and reduce stress.

4)     Be Kind to Yourself and Others

Take breaks when you can. Eat nutritious foods, get plenty of sleep, and be kind and gentle on yourself—you deserve it.  Helping others can also make you feel good about yourself. Survivors in our LifeLine Support Program have reported that helping patients who were newly diagnosed actually helped them to feel better about themselves and what they had to go through with cancer.

5)     Ask for Help

There are resources available that can help you with practical and emotional issues surrounding your cancer. Start with your doctor and patient navigator. Sometimes an oncology social worker is the one who has a list of resources available in your area. Ask for help from family and friends who can step in to help with practical needs. If you have a hard time asking for help, designate a caregiver or advocate who can find you the help you need.

Katie Brown

Content courtesy of LUNGevity

Myeloma Highlights From #ASH14

(Editor’s note: Jack Aiello is a PEN board member and a myeloma patient who is extremely active in the myeloma patient advocacy world)

According to Jack Aiello (definitely not medically trained)

This is my 9th year attending ASH (American Society of Hematology), where over 26,000 attendees (most ever) from all over the world (hematologists/oncologists, lab researchers, oncology nurses, scientists & 300 pharma companies) presented latest research results via both oral presentations (1000) as well as posters (3000) on all blood cancers. This year there were 855 abstracts (>100 clinical) on Myeloma alone, many of which were selected for oral presentation.

Rather than attending talks on Biology, I typically focus on the Clinical Trials, which I’m able to understand and are more relevant near-term to patients. Even at that, there are overlapping MM oral sessions as well as 4’x6’ posters without reprints, so it’s always possible that I have not included something of interest to you or made a typo because I can’t read my own writing as detailed powerpoint slides are presented quickly. You might want to view the published abstracts at www.hematology.org and various press releases. [Wherever relevant, I’ve listed Day- Abstract#-Lead Investigator after the trial results, e.g. {Sat-31-R. Vij} and clicking on the abstract number will take you to the actual abstract.]

There are other ways to learn more about results from this conference. The IMF and Patient Power were conducting video interviews of MM experts for postings on their site. There are scheduled webinars (MMRF 1/8/15, IMF 1/15/15) which you can listen to live or by replay. You’ll also find some patient blogs (including mine) as well as MM expert video interviews posted on the IMF website (www.myeloma.org). And all of us in the SF bay area should attend the LLS Blood Cancer Conference (which includes updates from ASH) Jan 24, 2014 in SF (http://bit.ly/NorCalBCC to register). Dr. Tom Martin of UCSF will do a great job presenting the latest information.

Presentations and posters of clinical trial results follow the same format: Background (including hypothesis), Study Objective, Design & Treatment schema, Patient Characteristics & Cohorts, Responses (include high-risk cytogenetics), Toxicity (hematological and non-hematological), Conclusion, and Next Step. Remember, the goal of Phase I (typically handful of patients) is to determine “Maximum Tolerated Dose”; Phase I/II and II (typically 25-75 pts) continues to measure dosage escalation and safety while looking at responses; and finally Phase III (several hundred patients) compares response rates between new and current treatments.

Treatment schedules are defined for stages of Induction, and optionally Transplant, Consolidation, and Maintenance with specified Randomization along the way; dosage amounts and scheduling are provided for each drug along with optimum number of treatment cycles (typically 28 days). Risk stratification correlates various techniques such cytogentics and FISH analysis (e.g. chromosome deletions and translocations) gene-expression profiling (GEP).


  • Blockbuster? While I didn’t see a blockbuster announcement this year, I saw many posters and oral presentations that focused on potential myeloma and bone marrow microenvironment markers as treatment targets for which drugs should be developed and may very well become future blockbusters.
  • Smoldering Multiple Myeloma (SMM) Recently, “ultra high-risk” SMM (plasma% > 60%, free light chain ratio > 100, or focal lesions > 1) has now been reclassified by the International Myeloma Working Group (IMWG) as full-blown MM…meaning that contrary to the previous “watch-and-wait” recommendation, this asymptomatic patient should now be treated as any MM pt. And rather than “watch and wait”, more studies are being done on “high-risk” SMM pts (M- spike >= 3g/dL and plasma% 10-60% but no CRAB damage) to determine if earlier treatment benefits them. Dr J. Mikhael dubbed this “SLiM”-CRAB…S=60, Li=light chain and M = MRI.
  • Monoclonal Antibodies This continues to be the most exciting next area beyond Proteasome Inhibitors (e.g. PI such as Velcade) and IMIDs (e.g. Revlimid) that will yield targeted drug therapies. Daratumumab, Elotuzumab, and SAR650984 are all making their way through trials.
  • So many options In general better responses and longer progressions-free survivals result in better overall survivals. The list of treatment options since last year’s ASH continues to grow now that we have Carfilzomib and Pomalidomide, which can be combined with other treatments and often work when their predecessor (e.g. Velcade & Revlimid respectively) stopped working.
  • Maintenance This is still a hot topic. Most agree that maintenance (a better name might be “continued treatment”) improves progression-free survival and some trials are showing overall survival benefit as well. Many docs believe that continuous maintenance till progression yields better results than maintenance for a fixed time period.
  • Clinical Trials There are clinical trials for every diagnosis phase… from high-risk SMM to MM, for newly diagnosed thru relapsed/refractory, both SCT-eligible and non-eligible and maintenance. Trials are so important because that’s how we advance possible treatments and new drugs. Perhaps you want to ask your MM doc if there’s a trial you should consider.
  • Minimum Residual Disease (MRD) For the first time, there were 9 oral presentations and posters on incorporating MRD techniques (flow cytometry or DNA sequencing) within trials providing a better diagnostic tool to determine whether a particular treatment has been successful.. In time, MRD may also help guide further treatment (e.g. perhaps to stop maintenance) as well as provide information about your prognosis (e.g. examine the make-up of a myeloma cell). One poster showed that MRD progression via Flow preceded clinical relapse by 8 mos. {Sun-3394M.Gambella}
  • Quality of Life (QOL) & Costs QOL and Adverse Events (AE) continues to be a strong focus with any trial and while I wasn’t able to attend it, there was a major oral presentation on drug costs (more below).Of course, there continues to be unanswered questions such as:
  • I’m SMM…should I consider treatment or watch & wait?
  • Best treatment for me as a newly diagnosed or R/R patient? What if I’m standard or high-risk[del 17, t(4;14), t(14;16) about 25% of pts]?
  • For transplant-eligible, do it now, later or never?
  • Length and type of maintenance?Yet, I’m very encouraged by the continued progress to understand everything about MM, determine new MM cell targets, and learn what treatments work best.


  1. At the IMF Symposium, several questions were asked of the attendees (1000 clinicians and others). After each MM expert presented their side of the story, here were answers (“don’t know or maybe” not listed): 1) Should treatment be given to high-risk SMM? Y-17%, N-77%. Note this does not include “ultra” and there was general agreement about doing clinical trials to answer this question; 2) Should maintenance be continuous? Y-58%, N-39% but higher level of “Yes” for high-risk MM; 3) Preferred Therapy for Relapsed/Refractory Pts? Car-Pom-dex (KRd)-56%, Car-dex or Pom-dex -24% or 2nd SCT-19%.
  2. “We lack data on the usage of MRD results but fortunately MRD is being incorporated in trials” S.V. Rajkumar (Mayo)
  3. I attended a meeting of the NCI Myeloma Steering committee meeting, which approves clinical trials dependent on NCI funding. Since trials are expensive and often difficult to accrue, one discussion was around the NCI MATCH trial which pairs molecular abnormalities with drugs targeting that abnormality and whether this might be an effect umbrella trial design for MM.
  4. “Velcade must be part of induction treatment for SCT.” At the end of 2014, preliminary randomized data favored early SCT plus novel agents vs novel agents alone. P. Moreau (France)
  5. “Early SCT feasibility is 90% but delayed SCT feasibility is 70%.” P. Moreau (France)
  6. “At some point the biology of a pt’s MM will dictate whether or not an SCT is the besttreatment.” DETERMINATION trial results will help answer this. P Richardson (Dana Farber)
  7. “The median survival for standard risk MM patients is approaching 10 years.” Mayo’s mSMART classification shows OS for Standard (60%), Intermediate (20%) and High-Risk (20%) pts as 8-10, 4-5, and 2-3 yrs respectively. J. Mikhael (Mayo)
  8. IMWG definitions: Relapse-disease recurrence of >25% in the absence of current therapy after the pt showed a response. Refractory- refers to a relapse if a patient is on therapy (or within 60 days of completing treatment). Primary refractory means a patient never achieve a response from treatment.
  9. Drs should ask 5 questions when treating a relapsed pt: 1.Do I need to treat the pt now? 2.Should I retreat with previous therapy? 3.Have I used the Big 5 (Thal, Rev, Pom, Vel, Cfz)? 4.Have I used add-on agents (e.g. Cytoxin, Doxil)? 5.Have I considered an individualized, risk-stratified treatment such as intermediate risk needing velcade-based and high-risk needing more intense combinations. J. Mikhael (Mayo)


10. This Spanish phase 3 trial was the first significant study that compared Rev-dex versus “watch & wait”, for SMM pts considered high risk (PC > 10% and M-protein > 3g/dL, or >95% aberrant Plasma Cells…abnormal expression of CD antigens, or abnormal FLCs). 119 pts have been followed a median of 5+ yrs and shown 1) progression to MM for 23% vs 85%; 2) For those that progressed to MM and started therapy, those alive 5 yrs later are 83% vs 58%; OS is 93% vs 67%. {Sun-3465M-V.Mateos} There are other HR SMM trials looking at Rev-only {Sagar Lonial} and Cfz-Rev-dex {Ola Landgren}.


11. This poster offered clinical factors that predict the progression of SMM into MM within 2 yrs by having followed 287 SMM pts, 52% having progressed to MM. Factors associated with significant progression where 1) FLC ratio > 30; 2) plasma% > 15%; 3) M-protein > 2.3 g/dL; 4) beta2 microglobulin > 2 mg/l. They concluded that the 2-yr progression risk was about 18%, 21%, 42% and 79% if 0, 1, 2, or 3 risk factors were present. {Sat-2071R.Hajek}


12. While I didn’t see a significant presentation or poster in this area, MM experts at the IMF’s “Make Sense of Treatment” discussion agreed that RVd should be used independent of risk status but the results of the ASPIRE trial (see below) suggest KRd is also a reasonable option.


13. I was not able to attend this presentation but auto-mini-allo (mostly MUD) was compared with tandem auto in newly diagnosed FISH-del13q MM in this German study that looked at 200 pts. At median follow-up of 49 mos, 2-yr PFS (calculated from day 1 of second SCT) was 59% versus 47% respectively although median OS has not yet been reach for either group. Those smaller number of pts with both del13p and del17p also tended towards favoring the auto-mini- allo but it’s still early. {Sat-43S.Knop}


14. This phase 1-2 study examined weekly (instead of twice/wk) Carfilzomib, Cytoxin and dex (wCCd) in 30 newly diagnosed elderly pts. For the 21 pts at the MTD Cfz of 70mg/m2 plus Cfz maintenance, >=nCR was 41% (47% for twice/wk) and >=VGPR was 91% (77% for twice/wk). Toxicity similar with 19% serious AE’s. This may turn out to be a very important trial for patients, considering the big difference in going to an infusion center once per week instead of two consecutive days as is currently the requirement for Carfilzomib.{Sun-175A.Palumbo}

15. A phase 3 trial compared MPT-T versus MPR-R for 637 newly dx’d pts. Both arms resulted in similar PFS (~20 mos), response rates, and OS (~54% @ 4yrs). {Sun-179S.Zweegman}

16. You might hear about RVD-lite, Rev 15 mg days 1-12, Vel 1.3 mg/m2 once/wk, dex either 40mg/wk for pts <= 75 or 20mg/wk for pts >75 for 33 pts resulted in 82% ORR and was well- tolerated. {Sun3454E.O’Donnell}


17. The Phase 3 ASPIRE trial compared Cfz-Rev-dex (KRd) versus Rd for 792 relapsed MM pts. The results were a longer median PFS of 9 mos (26.3 vs 17.6) and a trend to longer OS although median OS has not been reached in either group. ORR was 87% vs 67% and, impressively, CR rates of 31% vs 9%.. All neuropathy for both groups was about 17% and grade >=3 PN was infrequent (each about 3%). Also interesting the patient reported outcomes showed an improved QOL for the KRd arm (perhaps because of deeper responses). {Sun-79-K.Stewart}

18. The Phase 3b STRATUS trial examined Pom-dex for 604 R/R MM pts, nearly 80% refractory to both Velcade and Revlimid. Median PFS and OS were 4 mos and 11 mos respectively while ORR was 35% (7% >= VGPR)…all this being good numbers for this heavily pre-treated group of pts. Grade 3 neutropenia (low white count) of 42% was the highest AE but counts recovered quickly. {Sun80-M.Dimopoulos}

19. Pom-Cytoxin-dex was shown to be superior to previous Pom-dex study in a Phase 2 trial of 36 R/R pts, 100% Rev refractory, 75% Vel refractory and 40% Cfz refractory. Improvements shown in ORR (65% vs 35%), PFS (9.5 vs 4.4 mos) and median OS (not yet reached vs 16.8 mos). Adding Cytoxin to those on Pom-dex only showed minimum benefit. {Mon-303-R.Baz}

20. Pom-Vel-dex (PVd) results in a Phase 2 study of 42 R/R pts showed 85% ORR (including 45% >= VGPR) and median PFS of 10.7 mos (including 9.5 mos in high-risk pts). Pts were Rev- refractory and most had prior Vel and SCT’s. Grade 3+ AE’s (mostly hematological) seen in 83% of pts but this is typical for Pom-dex. {Mon-304M.Lacy}


21. While I was not able to attend this presentation, this retrospective analysis of 466 pts examined timing and duration of Rev maintenance (5-15 mg daily or every other day) after an SCT. Questions asked: 1) Did maintenance improve disease status, e.g. put pts in CR who had not achieved CR before maintenance? Ans: After 2 yrs, 37% improved response and 50% of those pt improvements were from non-CR to CR; 2) What are the effects of starting maintenance early (within 4 mos) versus late (after 4 mos)? Ans: No PFS or OS differences; and 3) Does continuous maintenance beyond 2-3 yrs improve PFS and OS? Ans: No difference in PFS but there was an OS improvement. {Sun-194-I.Mian}

22. A poster from the FIRST trial (Continuous Rd vs Rd18 vs MPT) of over 1600 newly diagnosed elderly pts examined maintenance and concluded that continuous Rd improved outcomes (PFS, OS) irrespective of responses achieved. {Sun-3458-N.Bahlis}


23. Ibrutinib is a BTK inhibitor expressed by MM cells as well as osteoclasts, which breaks down bones, and recently received FDA approval for CLL and Mantel Cell Lymphoma. These early results from this phase 2 trial for R/R MM pts demonstrated that Ibrutinib showed response activity (25% >= stable disease, 4 mos PFS) with and without dex but also showed about half the pts having grade >=3 hematological AE’s so further studies will be done on Ibrutinib. {Sat-31– R. Vij}

24. Panobinostat (Pan) is an HDAC inhibitor that recently was not approved by an FDA advisory committee (GI/diarrhea issues vs addtl 2.2mo PFS) but is still being tested in trials. A final determination by FDA regarding approval is still pending. A small (6 pts reported) phase 1 study of Pan (20 mg) + Cfz (+ minimal dex of 0-8mg/week) for R/R MM pts showed 46% ORR (inc 19% >= VGPR) but also some AE’s. {Sat-32-J. Kaufman}

25. Another Phase 1/1b Panobinostat trial for 31 pts paired it with RVd, except this time with Pan 10mg and for newly dx’d pts, resulting in 95% ORR and a promising depth of response with a nCR/CR for 50% of pts and no surprising toxicities. {Sat-33 -J. Shah}

26. Oprozomib is an oral PI from Onyx tested as a single agent in a Phase 1b/2 study for 87 pts. Cfz- refractory pts had an 18% ORR. Oprozomib, being given either 2 days per week for 2 weeks or days 1-5 for 2 weeks, has been reconfigured from powder in a capsule to a tablet to an extended- release tablet in order to improve efficacy and minimize AE’s. {Sat-34-R. Vij}

27. Ixazomib is an oral PI from Takeda (Millennium name is going away) and was tested in 50 newly dx’d pts in a Phase 2 trial. Ixazomib-Rev-dex was given as induction for 12 cycles followed by Ixazomib maintenance until progressionat 4mg on day 1, 8, and 15 each month. ORR was 90% (>= VGPR 59%) with PFS of 22 mos. Maintenance improved response in 48% of pts, with CR/nCR going from 24% to 62% with manageable AE’s. {Sun-82-S. Kumar}

28. SAR650984 (Anti CD-38 mAb from Sanofi) was tested in a Phase 1b trial with Rev-dex in R/R MM 31 pts @ SAR dosage 10mg/kg. SAR (given twice/week)-Rd resulted in 63% ORR for pts (94% refractory to Rev!). For those refractory to both Rev & Vel, 40% ORR. Some hematologic AE’s (common with Rev), some infusion site reaction during first 2 cycles. {Sun-83-T.Martin}

29. Daratumumab (Anti CD-38 mAb from Janssen) was tested in a Phase 2 trial with Rev-dex in R/R MM 30 pts with Dara dosage 16mg/kg (once/wk 8wks, then twice/mth 16 wks, then once/mth till progression). This achieved an ORR of 87% (7% CR, 43% VGPR) with a median time to CR of 5 mos. For pts not Rev-refractory, 75% >= VGPR and AE’s same as Rd. {Sun-84-T.Plesner}

30. Daratumumab was combined with 4 “baseline” regimens Vd, VTd, VMp and Pom-d (6 pts in each arm) and all newly diagnosed except Pom-d R/R. ORR was 100% in the first 3 arms and 50% in the Pom-d arm, all with very low AE’s. {Sun-176-P.Moreau}

31. Elotuzumab (Anti SLAMF7, formerly CS-1, mAb, expressed on 95% of MM cells but little on normal tissue) was combined with Rd in a Phase 2 trial of 73 R/R (but Rev-naïve) pts. At 10mg/kg dosage, Elo-Rd showed ORR 92% and PFS 32 mos with no dose-limiting toxicities. Elo is being tested in Phase 3 trials for R/R and NDMM pts. {Mon-302P.Richardson} In a poster, Elo-Rd was similarly effective for pts with renal insufficiency. {Sat-2119-J.Berdeja}

32. LGH447 (Pan-Pim Kinase inhibitor, daily MTD 500mg, oral from Novartis) was studied in a Phase 1 trial of R/R pts with doses 70-700mg. Single agent activity was 10.5% ORR (best VGPR) over all doses, some grade 3/4 AE’s (mostly hematologic). {Mon-301-M.Raab}

33. Other new drugs you might hear about are: Ricolinostat (ACY-1215), HDAC Inhibitor; Selinexor (KPT-330), anti-tumor suppressor; PRLX 93936, Ras pathway inhibitor; Cabozantinib (SL-401), tyrosine kinases inhibitor; Ulocuplumab (BMS-936564) Anti-CKCR4 antibody; Filanesib (ARRY-520), kinesin spindle protein (KSP) inhibitor; Indatuximab Ravtansine (BT062), antibody conjugate including anti CD-138; Ricolinostat (ACY-1215), HDAC6 inhibitor; and more.


34. On Saturday a lecture was presented called “The Rising Cost of Medical Care: Understanding the Problem and Exploring Solutions” which certainly includes the rising cost of drug. While I wasn’t able to attend, I heard the example being given about Gleevec (possibly the first targeted novel therapy), a daily tablet that results in curative control of Chronic Lymphocytic Leukemia. When it became available in 2001, the annual cost was $28K/yr. Now, with no difference in the drug formulation or packing, that annual cost has skyrocketed to $92K/yr. Apparently the phrase “financial toxicity” was frequently used during this meeting. And patients are not taking their medicine or even filling presricptions because of cost. Should docs introduce the concept of “cost-effectiveness” to the pt? Dr. Kantarjian from MD Anderson said that drug prices are now set not at a reasonable return on investment, but on “whatever the market will bear”. Clearly, the cost of medical innovation and the fair price of new medicines is a complex topic which requires urgent attention.

35. For Light Chain MM, Free Light Chain test via serum (blood) is more reliable than FLC test via urine due to the rapid clearance of the LC in urine. {Sun-180-J.Corre}

36. While I wasn’t able to attend this presentation, this abstract gives you some insights in understanding gene mutations where 150 MM cases were sequenced via a 77-gene mutation panel. After the first 30 cases, the most commonly mutated genes were KRAS (37%),
NRAS (21%), BRAF(13%), TP53, CDKN1B, DIS3 (each 11%), FAM46C, STAT3, and
IRF4 (each 8%). The MEK-ERK pathway was mutated in 61% of cases and in 3 cases more than one gene in this pathway (NRAS, KRAS, BRAF) was simultaneously mutated. {Sun-169– KM.Kortuem}

37. While I wasn’t able to attend this presentation, this abstract was another study on risk analysis and gene mutations from the MMRF CoMMpass trial (in which at least 2 of our SF Bay Area MM group participate). CoMMpass will study 1000 pts, of which over 650 have been accrued and 195 were reported on in this presentation. Looking at gene mutations, 44 distinct genes were mutated in at least 2% of patients. The most common mutations (>7 patients) occurred in KRAS, NRAS, IGLL5, DIS3, BRAF, ACTG1, EGR1, FAM46C, TRAF3, DUSP2, FGFR3, and PRR14L. As the study continues to mature, we expect it will provide unprecedented molecular characterization and correlating clinical datasets that will help define the factors of response to anti-myeloma agents and facilitate future clinical trial designs, thus serving as a stepping-stone toward personalized medicine for myeloma patients. {Mon-722-J.Keats}

38. Renal response was evaluated in a retrospective study of 150 R/R pts with moderate or severe Renal Insufficiency (RI) in this poster. After treatment with Rev and/or Vel based treatments, 15% showed renal improvement (compared with 38% ORR), although there was no difference between Rev or Vel efficacy. {Sat-2104-J.Rubia} Another poster for 1135 NDMM pts with RI showed 66% showed improvement and 51% had complete reversal. {Sun-3368-W.Gonsalves}

39. A study examined prevalence and predictors of delayed cardiovascular disease (e.g. heart failure, stroke) and concluded that MM pts have a two-fold increase in experience CVD. As such, it was recommended that we should consider having a cardiologist as part of our medical team. {Tue- 857-S.Armenian}

40. This study examined how access to advanced care might result in better Myeloma survival by categorizing 45,000 pts in A) 43% < 20 mi from SCT facility; B) 35% 20-70 mi; C) 18% 70-200 mi and D) 4% > 200 mi. Median Survival based on distances were A) 34 mos, B) 37, C) 31, and D) 30. Other impacts studied were household income, race ethnicity and education. {Tue-858– R.Innis-Shelton}

41. One of the posters I found intriguing investigated treatment outcomes for patients who have more than one monoclonal immunoglobulin (M-protein), such as IgG kappa + IgA lambda rather than only IgG kappa. I didn’t even know this was possible but in fact about 2% of MM patients have multiple M-proteins. How bout that? It turns out that this occurrence is NOT associated with adverse treatment or survival outcomes. {Sat-2038-T.Mark}

42. This comment is from my good friend Jim Omel, MD and MM pt, who attended a presentation “Cancer Genome Conundrum” in which Dr. T. Golub said there has been a 95% cost reduction in human gene expression profiling. GEP is a very reliable predictor of early treatment response and relapse. Further research is needed to connect tumor genotype to tumor vulnerabilities. Lastly he indicated the genome sequencing will become routine, but interpretation will remain vexing for some time.


For someone diagnosed with stage III MM 20 years ago with only 2 treatment options available (MP or VAD-SCT) and given 2-3 years expected survival, I’ve seen incredible progress since 2000. While there continue to be unanswered questions, we now have many more effective treatments for MM, providing patients with better opportunities to manage their disease.

GLOSSARY (according to Jack)

Drug Class/Category

IMID – Immunomodulary Drug PI – Proteasome Inhibitor
mAb – Monocloncal Antibody Drugs (other name)

C – Cytoxin (Cyclophosphamide) Cfz – Carfilzomib (Kyprolis)
D – Daratumumab
E – Elotuzumab

M – Melphalan
P – Prednisone
Pom – Pomalidomide (Pomalyst)
R – Revlimid (Lenalidomide)
S – SAR650984
T – Thalidomide
V- Velcade (Bortezomib)
Treatment Success Measurements EFS – Event-free Survival
ORR – Overall response (>=PR)
OS – Overall Survival
PD – Progressive Disease
PFS – Progression-free Survival
PFS2 – PFS + next-line treatment PFS TTP – Time to Progression
TTR – Time to Respond

Treatment Response

CR – Complete Response: No sign of MM (0 M-spike) nCR – Near CR (positive M-spike, may be same as VGPR) MR – Marginal Response: 0-50% reduction in MM
PR- Partial Response: 50% reduction in MM
SD – Stable Disease i.e. no response but also not worse sCR-Stringent CR: CR+ normal FLC & no clonal cells VGPR – 90% reduction in MM
MRD – Minimum Residual Disease typically by Flow Cytometry or DNA sequencing to provide more accurate measure of MM.

Side Effects

AE – Adverse Event (aka Side Effects)
DVT – Deep Vein Thrombosis (blood clots) MTD – Maximum Tolerated Dose
ONJ – Osteonecrosis of the Jaw
PE – Pulmonary Embolism
PN – Peripheral Neuropathy
QOL – Quality Of Life
VTE – Venous Thromboembolism (PE + DVT)

Tests/When to treat?

CRAB – High Calcium, Renal, Anemia, and Bone… CRABi – CRAB + “i” increased infections
FLC – Free Light Chain
SLiMCRAB – Includes Ultra High-Risk SMM

SCT – Auto stem cell transplant.

“d” and “D” – Typically both mean Low-dose Dex (40 mg/week) these days MGUS – Monoclonal Gammopathy of Undetermined Significance
Pt(s) – Patient(s)
R/R- Relapsed/Refractory Ref defined progressing while on Tx or within 60 days. SMM – Smoldering MM



Multiple Myeloma Town Meeting at MD Anderson: Takeaways


I’ve just returned from MD Anderson in Houston where I facilitated a Multiple Myeloma (MM) forum put on by the Patient Empowerment Network (PEN). The program was titled “2014: Accelerating Progress in Myeloma and What it Means for You” and attended by 225 MM patients and caregivers plus another 40 folks watching live on-line.

Drs. Robert Orlowski (MD Anderson), Gareth Morgan & Faith Davies (both at the University of Arkansas) clearly explained what MM is (including MGUS and Smoldering) and its symptoms.  Did you know in just the last month, ultra high risk Smoldering MM, which is asymptomatic and treated as “watch & wait” has been reclassified as actual Multiple Myeloma where patients should consider treatment?  These doctors summarized current treatments as well as clinical trials for new drugs and protocols, focusing on new monoclonocal antibodies as well as future patient biology testing enabling more precise treatment recommendations for a given patient.

Later in the day, our panel of doctors was joined by a myeloma nurse practitioner, social worker, and 2 patients who all shared their thoughts on how patients can monitor and plan their treatments while living well with our cancer.  We all have varying degrees of MM symptoms and treatment side effects which need to be managed by our health team, perhaps the most important member being a patient’s caregiver.

In addition to breakout meetings where patients met each other and shared experiences while asking questions, many of which were addressed by the panel, the final hour of the forum was spent answering questions from both the live and on-line audience.  Sample questions included maintenance recommendations after transplants, length of bisphosphonate (aredia or zometa) usage, and the mental issues of testing every 2 months for smoldering without starting treatment. These are difficult questions without precise answers but our doctors and other panelist shared their experiences and advice.

I have no doubt (because many told me afterwards) that this program provided a wonderful education for both myeloma patients and their caregivers.  As a 20-year survivor of MM myself, I am proud to be associated with PEN and help make such a program possible.

(The following is from the editor)

This meeting was the first PEN meeting that was live streamed using Zoom.us technology. I registered for the streaming and watched the Houston meeting from my couch in Charlottesville, Virginia. The audio and video were very clear. The video was so clear that many of the photos below were the result of screen shots that I took while streaming. I loved watching this meeting online. The reason is, that I have been to these meetings and I have talked to the participants. The patients and their families so enjoy the meetings and so enjoy hearing the experts speak and listening to the patient stories and the patient questions. How wonderful that now we have a chance for more patients to benefit from these meetings. Many patients live too far to attend these meetings in person. Many are homebound or too sick to travel. Live streaming the meetings will give those patients a chance to watch the event.


Better Patient Access to HealthCare: Round Table Discussion Takeaway

I represented the Patient Empowerment Network at Patient Access Network (PAN)’s 10th birthday bash in Washington, DC On October 22nd. Not the cake and candles kind, but rather, a full day Roundtable to talk about…what else…health care. PAN’s goal to collect and collate information on how four key groups – (1) patients, (2) health care providers, (3) drug companies and (4) specialty pharmacies* might partner better with each other to improve medical care and make it more affordable.

As you might expect with more than 80 participants, there were no clear-cut solutions.

In the last 10 years, PAN has provided a financial safety net for 300-thousand patients grappling with life-threatening or chronic diseases. PAN has paid out nearly three-quarters of a billion dollars to help those patients pay medical bills. And while it will continue that part of the mission, it recognizes that the medical landscape is changing. Treatments are more targeted and expensive, more people are getting health insurance, either through Obamacare or Medicaid expansion. But experts acknowledge most recipients, including me, don’t read part or all of their policies.

My table, among a dozen at the forum, reflected a microcosm of the four key groups. It included representatives three non-profits, an Oncology specialty pharmacy, one drug company and of course, PEN. After considerable debate, we concluded that a change in the Standard of Care for patients is needed. What does that mean? That health care providers – doctors, nurses, social workers, psychologists need to do a better job to communicate with patients, both at the beginning of treatment and the end of life. Johns Hopkins in Baltimore for example asks every new cancer patient these four questions, the answers of which can drive the type and timing of a patient’s treatment:

  • What are you hoping for?
  • What’s important to you?
  • What do you worry about?
  • What brings you joy?

Conversely, patients need to take responsibility for their care and ask questions! What are the options for treatment? How long? What does it cost? Side Affects? Ask, ask, ask. Push, push, push for information. It’s a patient’s right, a right many patients don’t exercise. A right many patients, especially older ones, don’t care to exercise. A reminder of the old saw, “You can lead a horse to water, but you can’t make it drink.”

Another barrier to strengthening these partnerships: TMI – too much information – thanks in large part to social media. And, not all Patient Advocacy groups play nicely together in the sand box. Often there is duplication of services, competing interests and competition for dollars.

As for those start-of-treatment or end-of-life conversations, who’s going to pay for that? Insurance? The patient? The doctor? PAN? Which led me to conclude that a key ‘partner’ was missing from Tuesday’s Roundtable. The insurance industry.

PAN had made a conscious decision not to invite insurance companies, whose premiums are the subject of much debate and angst, not only among patients but also Congress. Roundtable speakers and participants agreed that today’s health care policies are driven by economics, not health needs. From my perspective, the conversation was incomplete without insurance reps. Many may view insurance as the enemy, but they are a KEY, maybe THE key player in this debate and need to be part of this discussion.

Financial toxicity became the catch phrase of the day.  Recently on “60 Minutes, MD Anderson Leukemia Chair Dr. Hagop Kantarjian said “high (drug) costs are harming patients.” However, a rep from Pharma, the high-powered drug company association asked, “What costs more?” The $100-thousand/year Hepatitis C drug, which can cure a patient, or monthly care in perpetuity without that medicine?

In other words, the value versus cost argument.

The Roundtable was a yeoman’s effort by PAN to collect in a diverse mix of advocates for patients, health care providers and the pharma industry to try to make things better. Under one roof. For an entire day. Each of the dozen tables offered ideas on barriers and potential solutions to health care’s thorniest issues. And while there are yet no definitive answers, PAN’s 10th birthday forum represented an admirable start to address improved patient access to and affordability of good health care.

(Carol Preston is a Washington DC-based communications consultant and eight-year CLL survivor)

*(Specialty pharmacies dispense high-end medicines for patients suffering life-threatening or chronic diseases like cancer, diabetes and Hepatitus C)

#ESMO14 Tidbits

ESMO 2014 is taking place now in Madrid, Spain. The ESMO website summarizes the goal and theme of the conference as follows:

The theme for ESMO 2014 is ‘Precision Medicine in Cancer Care.’ Whether you are a medical or surgical oncologist or a radiation oncologist, immunologist or pathologist, practising precision medicine means we are all working towards a common goal – improved patient outcomes. This is the ultimate goal of ESMO 2014.

Attendees can expect detailed exploration of the practical, political, and financial issues that stand between our ideals and the reality of implementing optimal care for every person suffering from cancer.”

About 18,500 individuals (over 15% from the United States) are attending the conference, an 11 % increase over 2012 attendance (the conference is held every other year).

So far, the conference is a huge success, with some breakthrough news as follows:

  • Real progress in targeted therapies for melanoma
  • New medicine to help advanced cancer patients gain weight
  • New medicine to fight chemo-induced nausea and vomiting
  • New data that shows women that are pregnant and have cancer should not be afraid of chemo hurting their fetus

The twitter stream has been quite active – in multiple languages! The hashtag is #ESMO14

There is one “kerfuffle” however. Apparently, Spanish “authorities” ban journalists, patients, patient advocates and nurses from visiting pharma and non-profit organization booths. The reason is not quite clear and those who are tweeting have been asking questions. Read an article about the “ESMO exhibit floor kerfuffle” here.

The overall feeling at the conference though, is one of excitement. There is a lot going on in the way of new research and treatment. And the takeaway is that there is real progress ahead.

Patient Family Advisory Councils: What They Are, How They Help

Recently, the formation and active participation of Patient Family Advisory Councils has been gaining ground at major medical centers. These councils are comprised of patients, family members of patients and employees from different departments in the medical center.

The idea of families of patients being considered as part of the medical team and not as “visitors” is more practical, more helpful and results in much better patient satisfaction and overall patient outcomes. Patients want their family members as part of their team and their support group. They trust them and rely on them. And no one knows the patient better than those close to them.

The Institute for Patient and Family-Centered Care  has great information about creating PFACs, including recruiting participants, developing bylaws and processes, and sustaining the council.

The Agency for Healthcare Research and Quality (AHRQ) also has some good information about why a PFAC can help further patient-centered care efforts in improving the delivery of care. The cahps website  explains,

“These councils help overcome a common problem that most organizations face when they begin to develop patient-and family-centered processes: They do not have the direct experience of illness or the health care system. Consequently, health care professionals often approach the design process from their own perspective, not the patients’ or families’. Improvement committees with the best of intentions may disagree about who understands the needs of the family and patient best. But family members and patients rarely understand professional turf boundaries. Their suggestions are usually inexpensive, straightforward, and easy to implement because they are not bound by the usual rules and sensitivities.”

Many major health centers now have PFACs. Some are new and some have been around for quite a while. Mayo Clinic formed a PFAC in 2004 and on the website, they describe some of the projects it has participated in, including improving wheelchair access, improving health literacy, evaluating health history forms and others.

Dana Farber Cancer Institute in Boston, MA established a PFAC in 1998. According to the Dana Farber website, the council has spear-headed the following projects:

  • Helped design treatment, program, and common areas throughout the Institute, including the award-winning Women’s Cancers Program;
  • Participated in renovations to the radiation therapy unit at Brigham and Women’s Hospital;
  • Launched a “Patients as Educators” program to share experiences and feelings about oncology patient/provider relationships with small groups of nurses and doctors;
  • Advocated for increased psychosocial support services;
  • Addressed patient parking policies;
  • Worked with Patient Accounting to create more patient-friendly billing letters;
  • Participated in planning for the Complementary Therapies Program;
  • Launched Side by Side, a quarterly newsletter for patients;
  • Served as a national model for patient-family participation in clinical-care services.

MD Anderson Cancer Center in Houston, TX has always been involved in patient-centered care, but the PFAC was just created last year. Patients and family members actually helped in the creation of the council, writing bylaws, developing strategies and recruiting members.

I spoke with Kay Swint at MD Anderson who co-chairs their new PFAC with 2 patient/family member co-chairs. Swint was part of a group from MD Anderson that attended a seminar at the Institute for Patient and Family-Centered Care specifically designed for learning how to create a PFAC.

Swint spoke about patient-centered care in general, explaining that it is really about reducing anxiety and suffering and forming strong relationships with patients.

“When you do that, outcomes improve. It is not enough to write a treatment plan. You have to make sure the patient and family are fully engaged and on the same page. You have to understand what the patients really care about and what their values and needs really are.”

The MD Anderson PFAC has 27 patients and family members and has 10 MD Anderson employees. The Co-chairs report up to Barbara Summers, Chief Nursing Officer and Marshall Hicks, MD, Division Head of Diagnostic Imaging. Summers and Hicks are both Executive Sponsors of the Patient Experience Division at MD Anderson.

The MD Anderson PFAC is currently working on projects involving patient communication and education, including how to get information to patients when and where they need it. They are capturing patient/family stories that teach valuable lessons on what’s important for patients. Swint explained that these stories are a great way to convey to health care professionals patients’ values and needs.

The Council is also working on electronic health record implementation and what is important from the patient’s perspective.

When I asked Swint what the patient and family members that were on the council thought about the initiative, she said that they were extremely enthusiastic.

“Members really want to contribute. If the meeting is running late and we ask who can stay to give feedback, most will willingly stay. This is so important. Just 15 minutes with patients and family members really improves our decision-making; their feedback is so important.”

City of Hope cancer center in California initiated their Patient Family Advisory Council in 2008. In 2012, they also initiated El Concilio, a PFAC for Spanish speaking patients and caregivers. I spoke with PFAC Co-chair, Annette Mercurio, about the council and what it does.

Mercurio explained that the council Chair is always a patient or caregiver and is elected annually. The Co-chair is a hospital employee. The City of Hope PFAC is certainly patient driven, with 22 patient members and 3 hospital employee members.

Some projects that the City of Hope PFAC has been involved with:

  • Several PFAC members sat with City of Hope CMO, COO and other hospital leaders to discuss outpatient care redesign
  • PFAC members contributed to improving after-hours meal options for caregivers
  • PFAC members contributed to strengthening volunteer support for chemotherapy patients
  • PFAC members contributed to the designing of the patient portal
  • PFAC members served on Rapid Improvement Event teams that contributed to process improvements for patient registration, design of the ambulatory surgery center in Amini, specimen transport and chemotherapy patient education

Mercurio told me that the hospital really feels that the council’s help is crucial for tackling any project that involves patients, their families and caregivers. When asked about the patients and caregivers’ thoughts on the council, Mercurio explained,

“The members feel that using their insight will really benefit other patients and caregivers. That helping others by serving on the council is one of the most important ways to make a difference. I am humbled by the dedication of these individuals.”

The emphasis on patient-centered care, patient satisfaction and involvement of patients, their families and caregivers is actively making a difference in healthcare. We at the Patient Empowerment Network hope that it gains momentum as it moves forward. Join the Patient Empowerment movement!















9 Ways to Propagate Patient Power

A success story is about having a positive outcome. We mostly hear about success stories as monetary achievements, but that’s really selling the word “success” short. I’m a brain cancer survivor. That’s a success story! I was barely out of my 20s when I was first diagnosed with what was first believed to be a benign brain tumor. My oldest daughter was only a year old then. She just turned 25. She’s only four years younger than when I was first diagnosed.

Where did the time go? I think to myself, “life is half spent before we know it.” There’s a saying that experience is the best teacher, but the tuition is high. Oh, so true! Through my treatments and surgeries I’ve lost the hearing in my left ear; the ability to swallow on one side; certain vision abilities; my tongue is paralyzed on one side (amazingly, the other side works to the point that you mostly can’t tell about the paralyzed side); I also have some memory loss. But I’m still here.

While of course I wouldn’t have chosen these circumstances — they happened to me and because of them I’ve gleaned a great deal of knowledge in a few particularly important areas: doctors, the business of medicine and being a patient. It’s because of my medical history that I have met or been treated by so many doctors. Some of those doctors have at times actually slowed down my path to better health or recovery — but I have learned from those experiences. I also know that there have been doctors without whom I wouldn’t be here today.

The enlightenment that I have achieved is important to share with those that may be at the beginning of their own healing path or one day will be walking it. They pertain to any healing path. Here are nine of the most important things I’ve learned.

If you know something is wrong, something is most likely wrong 
There had been years in between my being diagnosed wrong, and being diagnosed right — I had many symptoms. My particular cancerous brain tumor was relatively slow growing; the yearly MRIs indicated that “it may be larger due to angle or technology.” Instead of this being an alarm bell, or at the very least an indication for further testing, my doctors were lulled into a state of complacency.

I was seen often, looked quite healthy, and so I was probably just overreacting. I wasn’t. The tumor that looked slightly larger every year, was slightly larger. By the time I found a doctor that listened to me, and didn’t just look at me… the tumor had grown to twice the size than it was when it was originally diagnosed and treated. None of my previous doctors had compared my most recent MRIs with my original MRI to see it had grown. Listen to yourself, and campaign heartily.

Freedom to Feel
After you’ve received your diagnosis, you need to have the freedom to feel what you feel. You may have friends and family members that will put different spins on your things. There are those that are full of “gloom and doom.” Then there are others that will tell you not to be depressed when you’re depressed. They will tell you to be appreciative instead for all you do have. The intentions of these upbeat souls, is in the right place, but it will be difficult not to feel depressed some of the time. It’s okay to feel down about being sick, it doesn’t mean you can’t feel positive about your outcome, nor does it mean you can’t feel appreciative about what you have. Just knowing that is part of Patient Power.

Doctors are just people 
We put doctors on a pedestal. We believe them to have our best interest in mind, and I’m sure most do. However, doctoring is also a business. Doctors either consciously or unconsciously make decisions based on their ego, their desire to be noticed in the medical field, maybe even based on multiple reasons. This may sound callous, but think about it. Haven’t we all made a business decision here and there based on multiple reasons? They do what they have to do-you do what you have to do. Again being aware that this may be a part of the landscape is part of having power as a patient. Don’t be flattered that a doctor is interested in taking you on as a patient just because he’s considered an excellent doctor. Think about why the doctor will be good for you.

Doctors will seldom say “I don’t know” 
How much easier the process would be if doctors that don’t know, just said it. You could then take this non-information and move on, but instead a “not knowing doctor” can really slow down the process. You end up wasting valuable time on an opinion that should not even be in the mix. This makes the process more difficult, but being aware that it does exist, keeps you aware and on your toes, and a better patient. Try asking your doctor “Do you know if this will work?” “How will it work?” More information is better. If the answer is not what you want to hear, that’s okay. It’s an answer. You won’t be going to that doctor.

Use the Internet
This may seem obvious, but there are still those that don’t have access to the internet, don’t know how to use it, or perhaps are feeling too overwhelmed after receiving a bad medical report to go searching on the internet for themselves. If you don’t have or know how to access the internet, find someone else that does. There have been stories written about how people self-diagnose online. We’ve all read these stories and it’s important to understand the difference between finding out information after you’ve already received a medical diagnosis and trying to hunt down information to diagnose yourself before you’ve even been to a doctor about what is ailing you. That difference is enormous.

The Internet is invaluable. When I had my first surgery in 1990, there was no real Internet. What did exist was extremely slow, and had very limited information. These days, if you dig, you can find out so much, not only about your illness, but about your doctor’s background, and what other treatments and research is available as well. There are services that allow patients to comment, even rate doctors with whom they’ve consulted. This is good information. Information is part of Patient Power.

The more information the better 
I like doctor rating sites. These services keep doctors on their toes. If a doctor asks you to sign a legal document agreeing that you will not participate in one of these sites (I’ve heard that this is something that some doctors are doing now), walk away. If a doctor is that worried about you going online and making a negative comment about them, then this is not the doctor for you. Most doctors aren’t concerned about these sites because they know they’re doing a good job.

No doctor should make you feel your questions are a waste of time
No doctor should make you feel your questions are stupid, or that you’re stupid. Again, not all doctors know all things. Sometimes condescension is “I don’t know” expressed differently.

Opinions, opinions, opinions
It’s said you can take opinions all day long. You can… and you should. The more complicated the medical issue, the more opinions you should get. Try and get as many as your insurance will pay for, or you can afford. Yes, It can get to be overwhelming to get/have many opinions; it’s definitely easier to get only one — but what price easy? The one opinion you have may be a wrong opinion. It is so worth taking the time and doing the research. The best solution for you will become clear. I know from experience that this is true.

Always trust your gut
I asked one of my doctors about a certain therapy, and he emphatically told me that the therapy was not for me. Turns out he was wrong. That therapy is what may have saved my life. When he told me it was not for me, it didn’t sit right. I trusted my gut and pursued it anyway. Over my years as a patient, I have had a doctor strangely come to my bedside and cry. I had another who only returned my calls at 11:30 at night. Another told me we would be seeing each for the rest of my life, only to then have a follow up conversation several days later where he wished me luck, but that I should be seeing another doctor for follow-up.

All these things at the time seemed strange, but looking back now with hindsight, I know that all of these responses might have been indications of either things that were not right in their own lives, or in the most glaring cases, failing on the part of that doctor. So listen to your gut. If it doesn’t feel right, it probably isn’t.

(This post was originally published in Huffington Post)


Brain Cancer Survivor Helps Others Through Life Crises

Heidi Gottlieb is a brain cancer survivor who uses her experience as a patient and cancer survivor to guide others through their own life crises.

Twenty-five years ago, Gottlieb was diagnosed with a brain tumor. Her experience with being diagnosed at a young age (29 years old) at a time when there was no internet and limited treatment options for brain cancer taught her perseverance and the importance of patient empowerment.

After being misdiagnosed, enduring two grueling brain surgeries, undergoing two bouts of radiation treatment and a long re-education period where she had to relearn certain life functions such as how to swallow, Gottlieb made a commitment to teach others how to help empower themselves and march forward rather than give up.

One of the first events Heidi Gottlieb undertook as a cancer survivor and advocate for patient empowerment was to create a

250-mile fundraising walk from New York to Boston. As she walked, she spoke at schools and organizations along the way about her experience and her thoughts and feelings about cancer survivorship.

That walk taught Gottlieb that she wanted to dedicate her life to helping others through their life crises. She enrolled in classes and recently earned her certificate through the International Coaching Federation  as a Professional Coach.

In her role as a Transformation Coach, Gottlieb teaches people (20% are cancer patients) how to overcome personal crises, energize themselves, reach their full potential and move toward a more productive, happier life.

There is a lot written about empowering the patient, which is good. But the people that I want to reach are the survivors. Those who want to lead a so-called normal life, have a job and have a personal life. These people are sometimes “lost”. They are thinking about getting new jobs and wondering if they should tell their potential employer that they have cancer. I would like to help them”.

I asked Gottlieb if she considered herself an empowered patient. She replied,

“Yes, I am an empowered patient. I have been a student of my illness for 25 years and if you have been a student of anything for 25 years, you live and breathe it. I have been immersed in the medical field since I became ill because I wanted to know everything I could about my condition. It was difficult. There was no internet. Since I was not a medical student, there was no way to research about my brain cancer. I was bounced around from one doctor to another. I underwent surgery and radiation without knowing much about what I was doing.

 After my experience, I really wanted to dedicate my time to finding out more about brain surgery, brain cancer, and cancer survivorship in general.”

I asked Gottlieb what advice she could give other cancer survivors. She explained her philosophy as follows:

 “I know that the fact that I have been through so much and am still here is highly unusual. Not many brain cancer patients are survivors. My cancer could come back at any time. I have come to a place where I try very hard to live in the now. You never know what will happen. Through my experience, I have been given the gift of understanding that I must enjoy every moment.”

 Heidi Gottlieb has her own website where you can learn more about what she does as a Transformational Coach. She blogs often about her feelings on being a cancer survivor and an empowered patient. I have posted one of her latest blogs; read it here.

Bribing Anxiety

So, the last time that I had my regular appointment was a year ago. I was more than a year past treatment and my blood work came back good, my energy level was good and I had no issues to report. I was told that my complete remission was still in place and that the next appointment would be in six months. As it happens, the treatment that I received in clinical trial for my “moderately severe” matrix of genetic type of chronic lymphocytic leukemia (CLL), mutation status and symptom presentation worked out pretty much perfectly. Time to negotiate. “Let’s make it a year?” I implored. They set the appointment for six months but assured me that they would get together and consider the proposed new plan that I put on the table. A few weeks later I noticed, while checking my records on the online portal, that my next appointment had, indeed, been moved out to a year. And now I have that appointment coming up in a week or so.

I have embraced my remission and attacked life. I’ve been doing more over the past year and am just plain getting after it. I hardly ever say no to an opportunity, I smile a lot, I travel, I explore… And now I’m filled with anxiety. I want to take a nap. Does the fatigue mean that remission is over? I had a strange, very mild rash on my hands that really didn’t itch, but lasted a few weeks. Does that mean that there’s some bizarre infection in my body? My joints have been achy. I’ve had some pretty amazing headaches. Does that mean I have to start adding the term “relapsed” to my cancer vocabulary? Or am I just being a normal human being reacting to the unknown?

I know that I am reacting normally to the stress of cancer and that my responses are pretty much how all of us, at least quietly, deal with all the little things. We are told to take an inventory of everything and always report changes to our health care providers. We do this because some changes can be the early warning trip wire that our cancer has decided to change the rules. So we (and by we I mean I!) will always wonder if the next item up on the “how do you feel” menu is a harbinger of cancer or just the soreness that a 50+ year old guy feels after shooting the rapids in an inner tube for 5 hours. Anxiety and stress is something that gets added to the lives of every single person that is touched by cancer, patients and caregivers. We really cannot banish it from our lives, but we can rein it in.

A week of worry is not going to change the results of the upcoming hospital assessment. I’m either still in remission or not. So I will try to occupy my time and be productive. I’ll cook some fabulous meals for my family, give a presentation to a local civic group, mow the grass, write some articles, research a project… And try to minimize the amount of time I allow the anxiety to actually interfere with my life. I know that I cannot banish it, so I will try to paint it into a corner. Oh, and I’m bringing my doctor a bottle of wine. I’m told he likes wine and maybe a “bribe” will keep me on the one year check up cycle? Don’t give away my secret plan!

A Tribute to AJ Halavacs

AJ Halavacs of Fort Lauderdale, FL died unexpectedly earlier this month. Since learning of his death a few days ago, I have been shaken to my core.

I had met AJ only briefly on April 12 at Moffitt Cancer Center in Tampa, FL. But what an impression he made! With his big personality and his story.

AJ was among the patient guest speakers at a CLL Town Hall meeting at Moffitt, sponsored by Patient Power. The educational symposium featured two CLL specialists and was attended by more than 150 CLL patients and their families and friends.

He was a tall, strapping, handsome man with a ruddy complexion and a radiant smile. He never stopped smiling. You wouldn’t have known that AJ had suffered from CLL for many years. And that four months earlier, he’d been confined to a wheelchair, weak, with an ugly rash covering his body.

None of the treatments AJ had endured, much of it chemotherapy, worked for very long or very well. Until ibrutinib. The now FDA-approved treatment, trade name Imbruvica, is considered a breakthrough immunotherapy to treat CLL. It targets the malignant cancer B-cells but leaves the healthy T-cells of the immune system in tact. Best of all, it’s an oral medication. Three capsules a day. No chemo.

Days after AJ began to take ibrutinib in a clinical trial, he was out of that wheel chair. The rash disappeared. He quickly regained his strength. He traveled to Amsterdam and North Carolina for business. He expressed great joy in his longtime marriage to Jane, who had accompanied him to the town meeting, and unbridled pride in their three grown sons, one of whom is engaged to be married. Because of his seemingly miraculous response to ibrutinib, AJ and Jane were looking forward to the rest of their lives.

Something happened, however, after April 12. Apparently years of CLL and treatments had taken too harsh a toll. AJ developed Richter’s transformation, a CLL patient’s worst medical nightmare. AJ Halavacs died at Moffitt Cancer Center on June 3.

We CLLers think of these treatment advances as a bridge. Cross a bridge with a particular treatment to make it to the next bridge. Our goal is to cross enough bridges so that we can live with our CLL and die from something else. AJ reminds us that there is no cure yet for this disease. Patients remain hopeful, but after AJ’s death, this patient feels more vulnerable and less sure-footed about the path forward.

Nonetheless, I am glad that I met AJ Halavacs and learned about him. Mostly I am honored to have circled his spirited, positive orbit for a few hours. He’d be the first to tell CLLers not to waste a minute fretting, “live large” and say ‘yes’ to every opportunity for the time we’ve been given.

Spotlight on StupidCancer: mHealth Comes to Patient Support Groups

If you are a patient and haven’t yet researched or joined a patient support community, you should.

Communities exist for chronic cancer patients, chronic disease patients, rare disease patients and patients with almost any disease you can think of. Founders of these communities are often patients themselves and started the community with the thought of helping other patients through the medical and emotional maze that comes with the territory of living with a serious illness.

Websites such as Ben’s Friends or HealthUnlocked are networks of different patient communities relating to different diseases. PatientsLikeMe works more like a database with a member login and the ability to search for others with the same disease. It touts more that 250,000 members, and over 2,000 conditions represented.

Imerman Angels offers one-on-one cancer support. Patients are matched one to one with another patient, hopefully who lives nearby, is about the same age, with the same diagnosis and some of the same problems and issues.

And now, there is something more….. StupidCancer, an organization specializing in young adult cancer is developing a mobile app that will match cancer patients globaly, digitally and anonymously, via SMS, one to one, with another cancer patient.

StupidCancer states on its website,

“Stupid Cancer ….empowers those affected by young adult cancer through innovative and award-winning programs and services. We are the nation’s largest support community for this underserved population and serve as a bullhorn for the young adult cancer movement.” 

Adolescents and young adults account for 72,000 new cancer diagnoses each year. What better than a cool mobile app to appeal to the younger generations? StupidCancer’s Instapeer is an app that works much like an online dating service. You can screen and filter and choose, all anonymously, to be matched to another cancer patient in order to converse, support and help one another through living with cancer. See the Instapeer images below to get a feel for how the app works:

Instapeer screen shots

Instapeer screenshot2

Instapeer screenshot 3

StupidCancer feels that current cancer peer matching services need a 21st century makeover – a more relevant process that is in sync with today’s empowered healthcare consumer.

The Instapeer campaign on Indiegogo claims that Instapeer is for any cancer patient, but it will most likely appeal to the younger and more tech-savvy candidates.

The Indiegogo page lists the medical advisors involved in the development process and also offers numerous “perks” for contributions of increasing amounts.

I spoke with Matthew Zachary at Stupid Cancer and asked him how he came up with the idea.

“No one else was doing it. It’s a revolutionary idea that young cancer patients are really excited about. At the recent OMG Cancer Summit for young adults this year, when I assured the audience that we would have an app by Labor Day, Instapeer got a standing ovation.”

StupidCancer anticipates 500,000 users adopting Instapeer by 2016.




Spotlight on CareBrigade: How a CareBrigade Can Help You

CareBrigade was created by Florence Harvey for herself, when diagnosed 10 years ago, in a new city far from family. A CareBrigade is a Patient Advocacy Posse of friends, family, neighbors, church members and acquaintances that can be lined up right after the diagnosis, even before the Patient  knows what he/she might be needing, and that be called on at any stage of the medical journey.

The CareBrigade 5 Step system ©  empowers a Patient supported by at least 2 friends or family members chosen by the Patient. To get a CareBrigade started, identify the possible specific needs  (a “Wish List” of tasks),  timelines, and  the talent available in advance, and have a ‘worker bee” team in place “just in case” and  “just in time.”  The Patient chooses  her/his Core Team:  Co-Leader, Scribe, Medical Researcher, Communicator, and communicates directly with them. The Co-Leader (supported by a Scheduler) buffers the Patient  dealing with too many people during a time period that can be overwhelming.

A CareBrigade

  • Empowers Patients to be a full partner with their medical providers,  supported by friends and families with some medical savvy, serving as volunteer Patient Advocates,  Patient Navigators, Scribes,  and medical researchers/consultants.
  • Empowers  Patient’s families,  friends, and  acquaintances to know  in advance which “tasks” might be most challenging for the Patient at each stage, to  pick in advance the ones they could joyfully and easily do, and volunteer before the Patient has to ask.
  • Encourages Patients to use self-care, alternative therapies, relaxation techniques, a compassionate listener,  and self-designed spiritual practices to manage their own fear and anxiety through each stage of the healing journey.
  • Enrolls Friends and Family (even those at a distance) to play valuable roles the Patient might not think of  (like Co-Leader, Spiritual Advocate, Scheduler, Communicator)  using Web based tools, the telephone, or Skype.
  • Solicits in advance (on behalf of the Patient)  willing to offer day-to-day practical support volunteers for Tasks customized to  match the volunteers gifts and the projected at-home recovery Wish List needs generated by the Patient.

The FREE CareBrigade Web site   www.CareBrigade.com  can be used by folks who want to help,  to learn and use the Roles,   no matter the distance. The Web site outlines the 5 steps, suggests 6 Core Support  Roles, offers forms and WEB sites for each Role, and provides a Resources page suggesting additional Medical, Spiritual, Practical tools to facilitate execution of a CareBrigade.

Watch the following video as a CareBrigade member talks about her experience:

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