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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!

From the Diary of a Bladder and Prostate Cancer Patient

This diary entry from our partner, Treatment Diaries, is from a man diagnosed with bladder and prostate cancer in 2000.

Diary Entry:

A year ago, my life changed significantly…I was diagnosed with stage 3 bladder cancer. Later it was determined prostate cancer had also joined the party (need to limit those medical malady invites).   The prior 12 months allowed me to  experience (against my better judgement) life’s highs, lows and a great deal of uncertainty. But with support of friends, their prayers, a positive mindset, humor, access to an incredible medical staff, and an extremely supportive wife, I’ve continued to stay upright.  Manage to stay upright despite; 12 rounds of chemo (Cisplatin sucks), bladder removal/reconstruction, losing 30 pounds in 2.5 weeks post bladder surgery, an inability to taste food during the holidays (not to mention I couldn’t drink), a dreadful winter, multiple catheters and pills, lots of pills.   Now that I think about it….I didn’t have a good time.

This week my last three month consult was completed. All the news received was the best I could hope for….no indication of cancer at this time. Now I am no longer a patient, but a patient/survivor who should share his experience with others. To all of you who posted to my diary…..THANK YOU!!  I can only hope to do the same for others!

Take a look at Treatment Diaries – where cancer patients can connect and share anonymously

 

From the Diary of a Stage 4b Melanoma Patient

I am a male with Metastatic Melanoma Stage 4b. Clinical trials have been saving me. Latest is GSK B-RAF inhibitors. Jan07 Original Site was my left thigh. Removal, sentinel node removal, all clear. Mar09, golf ball in left groin. Removal. Lymphandectomy Jun ’09. Reoccurrence in chest Dec10. Inoperable. BRAF trial Apr ’11, still on trial.

Still thriving as of May 2015!

Diary Entry – Melanoma Patient

Amazing, when I wrote this diary title down – September 2014, I recalled how it was not that long ago that I refused to write dates. For over 2 and a half years, I lived in 3-week blocks. Couldn’t plan anything, couldn’t do anything, because I was so close to being finished. Two stints in a hospice house proved that. Yet here I am today and now I keep track of my entries by writing the date.

So Fall is upon us, the leaves have changed color and are falling in great numbers. The mornings are brisk but the afternoons get warm…well, warm for us up here, I suppose. Went for a good walk today through the forests, I just love the colors and the smells of fall. It was great.

My dizziness still eludes myself and the docs. This is good as it means Mr. C is not visiting at this time but all the same I am frustrated at not being able to get “normal” again. I think I am well enough to go back to work…well, I want to anyway but it certainly won’t work if I can’t get there without falling down.

I read another person’s post about their recovery and how the length of time it takes tends to baffle them. That really helped. The only people I know that have been to the edge like myself and have made it back just aren’t the same people they were going in and have conceded to not working anymore. I am bored without the work and being a part of something bigger. These are long days at home, long, especially when the body is working fairly well compared to what it was. Summer is gone and fall is here, next comes winter so I better find a hobby cause winters are long up here.

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).

OVERALL IMPRESSIONS

  • 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.

COMMENTS AND DISCUSSIONS I FOUND PROVOCATIVE

  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)

SMOLDERING MM

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}

FRONTLINE THERAPY FOR TRANSPLANT ELIGIBLE PATIENTS

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.

TRANSPLANTS

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}

FRONTLINE THERAPY FOR TRANSPLANT INELIGIBLE PATIENTS

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}

TREATMENTS FOR RELAPSED/REFRACTORY (R/R) PATIENTS

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}

MAINTENANCE (including CONSOLIDATION)

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}

NEW DRUGS

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.

OTHER RESULTS

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.

SUMMARY

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

 

 

Success is Being a Survivor

Success means so much – its definition is reflective of the heart & soul of the perceived successor. To me – Success is not just about chasing a dream and securing it – true success is a lot deeper than pushing through a physical barrier to win the prize on the other side.

I believe true success is flying in the face of danger, marching towards the fire and leaning towards the negative perception that your efforts will reap nothing or your existence is un-important.

Success is proving that your hunch was right, your dream was correct and your gamble paid off – NOT because you put in resources to get back (something for yourself). But, rather you gave your all for the good of others, for the delivery of kindness, for love in the form of understanding and ultimately sacrificial leadership for the fulfilment of a need in your community. Success can take many years and in most cases it does. It’s a gradual slope of hard work and its rewards are up there – on top of the mountain.

Why do I believe this? I am a survivor of cancer x 3, medical negligence, a disability as a result and currently 77 doses of cancer treatments to keep me alive and very soon a bone marrow transplant. I’ve seen people lose their fight, right in front of me. I’ve heard people tell me to be quiet and stop fighting for the suffering of others. Success is being a survivor and that’s what I am!!

What do we need to be a survivor? What do you need to be a survivor? A very important element for me has been faith and foundation. My faith is everything and the family who love me, combined with my faith are my foundation. Without a strong foundation – we may topple and fall, either mentally or emotionally. However, many people find other elements of underpinning to keep them strong, through the largest hurricanes of life.

Even with these ropes of strength in our greatest storms, we may still topple – however a secure footing will help us find it easier to rebuild again and seek help when we need it. This may include a shoulder to cry on, someone to take us to medical appointments/assist with medication or someone to call a Psychiatrist. There is nothing wrong with asking for help, I believe it proves our strength and resolve.

Being a survivor takes a strong desire to continue no matter what, a resolve to not listen to the masses or those who do not support you – this may include family and friends. Believe it or not, when we have a difficult health journey, people walk away – even folk who should not or those we thought we could rely on. Some of us often discern these individuals, as they run for the hills and never return, yes – even those who are related to us.

We may not understand this behaviour at the time, but often the ones that run cannot cope with our journey (even if it’s a long-term success) and in the end, we may find that these relationships weren’t contributing to our health anyway. For myself personally – of course, there are days when physically I find my daily duties difficult to fulfil – these days, I discipline myself to know & practice when I need a little extra medication/a little extra rest and a little extra prayer, these things are what survival currently look like for me.

After my Bone Marrow Transplant, I will have less cancer pain and more resolve to survive in a different manner – I will continue forward and enjoy each day blessed and given to me. I will enjoy every day granted to me with the family and friends who love me and the ones that have stuck around – they are the ones we are surviving for. They are the people who value our survival – we may not realise how many people around us cherish our life and the energy we put into surviving, however, I know most of us have a good handful and many more supporters after that.

Treasure the people who cling to you and love your survival – you are worth more than all the gold and jewels, on our beautiful planet – your life and the days you have are more significant than you could ever know – just ask the people who love you.

Thank you for reading, please feel free to contact Jodie at the following email address: Jodie@jodiesjourney.com

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!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

Advanced Care Planning – What to Do Now!

This is important! And often overlooked, neglected, procrastinated, or ignored…for many reasons. If you are an adult, you need to think about your future and your wishes and desires in terms of your health care. And you need to discuss these wishes and desires with those close to you. It is only by doing this that you can ensure that your choices will be heard.

It is sometimes a difficult conversation to start, but those around you and close to you need to hear you. Start by thinking about quality of life, choices, and what is important to YOU. Think about who you can trust to listen to you and carry out your wishes if you are no longer capable of doing so.

If you are a cancer patient, think about what treatment options are available to you, what makes sense to you and what doesn’t. Do your research, talk to your provider or medical team and talk to those close to you. Then think about those discussions and what is important to you.

This is ultimately an individual and very personal decision. However, family members need to hear and respect your viewpoint, so include them in the conversation early on.

So many times, it happens that when a patient is unconscious or incapacitated in some way, family members get together and try to make decisions. Often, the family members cannot agree on what the patient would have wanted and their opinions and emotions cause conflict, anger and heartbreak. And then, since the patient never made her wishes clear, they are not carried out.

You can avoid this.

Take action now and start the conversation.

Once you have discussed your wishes with family members and loved ones, it is important to fill out the correct paperwork. Medical directives are legal documents that will state your wishes and help to see that they are followed. But do not rely on medical directives alone. Be sure to talk to family members or others close to you.

According to a recent article in the New York Times, large national studies showed that although more patients are completing medical directives, these directives are not always available to hospital staff when they need to be. Patients often keep them filed at home and they do not find their way into patient medical records or into the hands of those caring for the patient in an emergency situation. Be sure and make your wishes know to those closest to you and give them a copy of your directives.

Advance Care Planning is also a process. You can change your mind and may do that as time progresses. Be sure and update family members as your wishes change.

You do not have to do this alone. There are numerous avenues of help.

Resources

There are many resources that help with Advanced Care Planning. One good website is The Conversation Project.

Here, you can find information, a “starter kit” to help you get your thoughts together and start the conversation with your loved ones. This kit is available in Spanish, French and Mandarin as well as English.

There is also a PDF on how to have the conversation with your doctor, in Spanish and French as well as English. The website has a blog with patient stories and stories from staff members and advisors.

MD Anderson has an entire web page dedicated to Advance Care Planning . Specifically for cancer patients, this page was developed by an interdisciplinary team of doctors, patients, social workers, health educators and other health care professionals.

On this page, you will find step by step guidelines on how to start discussions with family members, talk with your provider, assign a family member to be your spokesperson and how to complete the legal paperwork necessary. PDFs are available in English and Spanish.

There is also a 5 part video series explaining the process of Advance Care Planning in depth with patient viewpoints and advice on how to make the decisions and discussions go as easily as possible.

The MD Anderson web page also includes information on Advance Medical Directive documents such as Living Wills, Power of Attorney and Out of Hospital DNRs (Do Not Resuscitate) with links to the legal documents and instructions and advice on filling them out.

This page is an excellent resource and also includes a number to call for further questions.

Don’t hesitate. Start the conversation now.

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.

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