PEN Blog Archives

Quizartinib in FLT3-ITD-Positive AML

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Introduction 

I generally think of treatments for AML as old, meaning they were around when I was diagnosed in 1992, or new ones that were developed after that. In the first 25 or so years since I was diagnosed, there were very few new treatments. In the last 5-7 years, however, there have been several new treatments. There are targeted treatments like, Ivosidenib (which I wrote about in November: Ivosidenib and Azacitidine for IDH1-Mutated AML) as well as Ventoclax which is used with a number of different drugs (Azacitidine, Decitibine and low dose Ara C). This post is about a new (to the U.S. anyway) drug, Quizartinib, which is used in AML patients who have a specific mutation FLT3 (fms-like tyrosine kinase 3), specifically a FLT3-ITD (internal tandem duplication) mutation. 

Overview of FLT-3 

There are two different mutations in the FLT3 gene, ITD and tyrosine kinase domain mutations (TKD). The most common mutation in AML is in the FLT3 gene. About 30% of AML patients have an FlT3 mutation, with FLT3-ITD mutations more common than FLT3-TKD ones. Some of the existing drugs for FLT3 mutations treat both. Midostaurin (Rydapt) and Gilteritinib (Xospata) are used in patients with either FLT3 mutation. Quizartinib is only used to treat patients with a FLT3-ITD mutation. 

Current Study of Quizartinib 

The current study, the results of which were presented at the 2022 European Hematology Association (EHA) Annual Meeting in Vienna, tested standard chemotherapy with Quizartinib or with a placebo, followed by maintenance with Quizartinib or placebo for 3 years. More than 500 patients with a FLT3-ITD mutation were treated in the trial. Quizartinib or a placebo were added to the “7+3” standard induction therapy, which consists of 7 days of cytarabine (Ara-C) plus 3 days of daunorubicin or idarubicin. Patients who were in remission after induction either went on to up to 4 rounds of high dose cytarabine consolidation with Quizartinib or placebo and/or an allogeneic (donor) stem cell transplant, followed by up to 3 years of maintenance therapy with Quizartinib or placebo. 

The patients who received Quizartinib had a median overall survival of more than double the patients who received the placebo. Almost all patients in both arms experienced side effects of the treatment (emergent adverse events or AEs). This is not a surprise, most patients treated for AML have significant side effects. Patients who received Quizartinib had more side effects, in particular there was a higher incidence of significant neutropenia (low white counts) and more patients who received Quizartinib discontinued treatment because of adverse events. There were 56 treatment related deaths in the trial, somewhat more in those who received Quizartinib. 

Quizartinib looks like a promising treatment for FLT3-ITD AML patients. I believe that this is the only randomized (Phase III) trial that has been completed of a drug that treats mutations in the FLT-3 gene along with standard chemotherapy. It will be interesting to see how it compares to other drugs for patients with FLT-3 mutations. On the downside, it is only used for FLT3-ITD mutations, unlike Midostaurin and Gilteritinib. 

Further Reading 

Quizartinib Doubles Overall Survival in FLT3-ITD-Positive AML, article from Medscape on the trial of Quizartinib and Chemotherapy, June 13, 2022. 

Quizartinib Prolonged Survival VS Placebo Plus Intensive Induction and Consolidation Therapy Followed by Single-Agent Continuation in Patients Aged 18-75 Years With Newly Diagnosed FLT3-ITD+ AML, from 2022 European Hematology Association (EHA) Annual Meeting in Vienna. 

Daiichi Sankyo’s survival data mean it may finally be ready to compete with Novartis’, Astellas’ marketed AML meds, an article from Fierce Biotech, which covers the biotechnology industry. 

Xospata FDA Approval History, from Drugs.com, gives a history of the FDA approval of Xospata (gilteritinib). 

Overcoming Resistance: FLT3 Inhibitors Past, Present, Future and the Challenge of Cure, Capelli, D.; Menotti, D.; Fiorentini, A.; Saraceni, F.; Olivieri, A. Cancers 2022, 14, 4315. A long journal article on treating FLT-3 AML (I have not read all of it). 

FLT3 Inhibitor Quizartinib Improves Survival in AML reports on an older study showing patients with relapsed/refractory FLT3-ITD-positive AML have improved survival with Quizartinib, given as a single agent compared with standard-of-care chemotherapy. Medscape, July 02, 2018. 

Cancer Awareness Calendar 2023

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January

Cervical Cancer Awareness Month

Blood Donor Month

February

National Cancer Prevention Month

Gallbladder and Bile Duct Cancer Awareness Month

World Cancer Day (February 4, 2023)

National Donor Day (February 14, 2023)

Rare Disease Day (February 28, 2023)

March

Colorectal Cancer Awareness Month

Kidney Cancer Awareness Month

Multiple Myeloma Awareness Month

Triple-Negative Breast Cancer Day (March 3, 2023)

International Women’s Day (March 8, 2023)

Anal Cancer Awareness Day (March 21, 2023)

April

National Cancer Control Month

Esophageal Cancer Awareness Month

Minority Cancer Awareness Month

Minority Health Month

Testicular Cancer Awareness Month

World Health Day (April 7, 2023)

National Oral, Head, and Neck Cancer Awareness Week (April 11-17, 2023)

AML Awareness Day (April 21, 2023)

May

Bladder Cancer Awareness Month

Brain Tumor Awareness Month

Cancer Research Month

Clinical Trial Awareness Week

Melanoma and Skin Cancer Awareness Month

Skin Cancer Detection and Prevention Month

Melanoma Monday (May 1, 2023)

Women’s Check-up Day (May 8, 2023)

Women’s Health Week (May 14-20, 2023)

June

Cancer Survivors Month

Cancer Survivors Day (June 4, 2023)

Men’s Health Week (June 12-18, 2023)

July

UV Safety Awareness Month

Sarcoma and Bone Cancer Awareness Month

 August

Summer Sun Safety Month

World Lung Cancer Day (August 1, 2023)

September

Childhood Cancer Awareness Month

Uterine Cancer Awareness Month

Gynecologic Cancer Awareness Month

Blood Cancer Awareness Month

Thyroid Cancer Awareness Month

Ovarian Cancer Awareness Month

Prostate Cancer Awareness Month

MPN Awareness Day (September 14, 2023)

World Lymphoma Day (September 15, 2023)

Take a Loved One to the Doctor Day (September 19, 2023)

October

Breast Cancer Awareness Month

Liver Cancer Awareness Month

National Mammography Day (October 20, 2023)

November

Lung Cancer Awareness Month

National Family Caregiver Month

Carcinoid Cancer Awareness Month

Pancreatic Cancer Awareness Month

Stomach Cancer Awareness Month

Managing MPN Fatigue During the Holiday

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Managing MPN Fatigue During the Holiday from Patient Empowerment Network on Vimeo.

MPN Care Partner and Patient, Jeff and Summer discuss how to manage fatigue during the holiday season. Summer tracks her and ensures she’s walking daily. Jeff shares to never overschedule yourself and make sure you prioritize your rest.

Transcript

Jeff:

Hi I’m Jeff. 

Summer:

Hi I’m Summer and this is Zelda. Say hi. Say hi, Zelda. 

Jeff:

And we’re your Patient Empowerment Network Leads for the myelofibrosis blood cancer, myeloproliferative neoplasms. And we’re here to talk to you today about fatigue. Oh my gosh, Summer, we’ve got improv in half an hour. 

Summer:

We’ve got two Starlighters parties. 

Jeff:

And we’ve got a Christmas party on the 11th. 

Summer:

And we’re going to go to a concert and the Nutcracker Ballet. 

Jeff:

All of those things happening during the holiday season. 

Summer:

And Christmas shopping. 

Jeff:

Oh, Christmas shopping, I forgot. That’s exhausting. Are you going to be able to handle it? I know fatigue is a real symptom of it, of myelofibrosis. 

Summer:

Well, it’s a symptom of it as long as you handle it. But I always get eight hours sleep and on my phone, my Apple Watch records my sleep. And I get a 100 sleep score. And it makes a huge difference. Plus I go to the gym and I do exercise and walking for one hour every day to get my 10,000 steps. 

Jeff:

And the exercise helps with your fatigue? 

Summer:

Yeah, it makes me tireder. Of course. 

Jeff:

So, you sleep well and you track it so well. She’s even got me tracking my sleep and I don’t have myelofibrosis. But we check in with each other to see that we get enough sleep. And we’ve also adjusted our schedule, haven’t we? 

 Summer:

Yeah, we have our performances at our theater a lot more matinees which is good because older people, no matter what, like to do things earlier anyway. 

Jeff:

So, we’ve made significant adjustments in our life to deal with the fatigue portion of myelofibrosis. And we’ve made even more in this holiday season by scheduling things correctly and doing what you’ve just described. 

Summer:

I mean, at 1:15 we’ve got a rehearsal, improv rehearsal. Then we have people that want to check our theater. Then I have another comedy rehearsal and Jeff has a guitar singing rehearsal. 

Jeff:

We would encourage you folks to do the same thing in this holiday season. Don’t over schedule yourself. Get enough rest and have a happy holiday. Bye from Jeff. 

Summer:

Bye from Summer. Bye from Zyada. Say bye bye. 

Jeff:

We’ll see you next time. 

8 Tips For Coping With Christmas When You Have Cancer

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Christmas is traditionally a time of celebration, feasting on festive foods and drinks and gathering with family and friends. However, if you have cancer, this may also be a time of overwhelming emotions, exhaustion, or physical discomfort. Add in concerns about the current coronavirus pandemic, and you’ve got a recipe for a stressful holiday.  “As our second COVID Christmas is fast approaching and with our world so desperately wanting to return to normal comes a lot of holiday festivities, says Marissa Holzer, who has been living with metastatic breast cancer since 2014.  “Some of these parties and gatherings may bring unnecessary stress and anxiety, even during normal times, or they may make an immunocompromised individual feel unsafe.”

Let’s take a look at some ways we might reduce the stress of the festive season.

1. Plan Ahead

Consider what aspects of Christmas may be difficult for you, and plan ahead of time for what will help you cope.  You may find it useful to write a list. For example, keep snacks, hand sanitizer, and masks in your bag when traveling away from home.

2. Listen to Holiday Music

This tip comes from two-time breast cancer survivor, Terri Coutee, who finds listening to holiday music lifts her spirits. “It can be in the form of quiet instrumental when I am feeling peaceful and reading or resting,” she explains. “When I am cooking or decorating I might put on a favorite artist with a little jazz or swing to it and dance a bit while preparing for the holidays.

3. Ask for Help

The run-up to Christmas is a hectic time filled with food shopping, gift wrapping, decorating, and extra household jobs. Now is the time to call on the assistance of those who offered to help when you were first diagnosed.  Reach out to them and ask for practical help with Christmas chores. Also, do as much of your grocery and gift shopping online as possible.

4. Schedule Rest Time

Don’t expect to be able to do what you could do before cancer. Know your limits and don’t expect too much of yourself. You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.

Cathy Leman, who works with post-treatment survivors of hormone-positive breast cancer, says that “one thing that helps my clients cope during the holidays is being deliberate in creating space for themselves; ideally before they start their day. As little as ten minutes devoted to setting an intention, doing deep breathing or journaling can help you feel grounded and balanced.”

5. Adjust Your Expectations

Arising out of the previous tip, Jennifer Douglas, who was diagnosed with DCIS, suggests keeping expectations flexible. “Since our energy fluctuates so much during and after treatment it can be really difficult to know how much to put on one day,” she explains. “I found that giving myself grace to do a lot, or a little, with regards to holiday preparations, enabled me to feel more at peace. Some days I felt good and could do a lot, and other days I didn’t have the energy. Either way, I listened to my body and did what I could. Having flexible expectations of myself helped me get through the busy season while preserving my precious energy.”

6. Set Firm Boundaries

When you visit with friends and family the subject of your diagnosis and treatment may come up at some point. It’s perfectly acceptable to tell someone that you don’t want to talk about cancer if you don’t. It can be helpful to plan ahead of time how you will respond to these questions.

Rod Ritchie who was diagnosed with breast cancer in 2014 (followed in 2016 with a diagnosis of prostate cancer), steers clear of cancer conversations as much as he can. “Because I don’t want to turn a Christmas party into a pity party, I don’t mention the ‘C word’ unless it comes up for discussion,” he says. “ It doesn’t hurt me to have a day off the topic as well!”

7. Feel What You Feel

Christmas is a time of high expectations and the reality of our experience doesn’t always match these expectations. Tell yourself that’s ok. Let yourself feel whatever it is that you are feeling. Even if how you feel doesn’t correspond to what others expect, your feelings are still real and valid.

Breast cancer survivor, Nancy Stordahl, still grieves the death of her mother from breast cancer and finds Christmas can be a challenging time. “There is nothing wrong with honoring your grief by feeling it,” she says. “No one should feel guilty about grieving during the holidays or during any time of year, for that matter.”

Prostate cancer survivor, Gogs Gagnon, who lost his sister to ovarian cancer says he finds “comfort in sharing stories at family gatherings. Reliving my favorite memories and allowing myself to cry without fear of judgment is incredibly healing and therapeutic.”

8. Prioritize What is Best For You

You get to decide the kind of Christmas you want. It’s ok to say no to certain things, such as not visiting friends or family. Discuss your needs with friends and family, but remember that it’s ok to prioritize what’s best for you, even if others don’t seem to understand. In the words of Marissa, “My motto this season:  If it doesn’t bring peace, joy and love to your heart it is absolutely okay to say no.”

My wish for you this holiday season is that it will be a time filled with an abundance of peace, joy and love, and that the new year will bring good health and happiness to us all.

Merry Christmas.

Three Ways Patients Can Access Clinical Trials

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What are some ways that cancer patients can access clinical trials? In the “How Can Clinical Trials Be Accessed?” program, expert Dr. Seth Pollack from Robert H. Lurie Comprehensive Cancer Center and cancer survivor and patient advocate Sujata Dutta share three ways cancer patients can access clinical trials and advice to patients about clinical trials.

1.Talk to Your Doctor or Healthcare Provider

If you or your loved one would like to learn about available clinical trials, ask your doctor or other healthcare provider. They can find clinical trial information for you, or they can check with a specialist who might have clinical trial information readily available about your specific type of cancer.

2. Get a Second Opinion

If you or your loved one’s doctor does not find any clinical trials or if you want to find some additional options, getting a second opinion could help with locating clinical trial options. If you can schedule a second opinion consult at an academic medical center, you are more likely to find some clinical trial options. Academic medical centers are often connected to research universities that carry out clinical trials and research studies.

 3. Check Reliable Patient Advocacy Websites

Cancer patients and their loved ones can also reliable patient advocacy sites for information about clinical trials. In addition to the Patient Empowerment Network (PEN) website, try resources like the American Cancer Society and The Leukemia & Lymphoma Society (LLS) websites. The National Institutes of Health also maintains a large database of clinical trial options on the ClinicalTrials.gov website.

By taking advantage of clinical trial opportunities, cancer patients can access tomorrow’s medicine today, receive closer monitoring of their cancer, and help improve and refine treatments for future treatments. If you’d like to learn more about clinical trials, check out our Are Clinical Trials Safe? program.

Navigating Thyroid Cancer: Tips from Someone Who’s Been There

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So you’ve been diagnosed with the “C” word, specifically thyroid cancer, and now you’re seeing a whole new care team. This usually includes an endocrinologist who specializes in disorders of the endocrine system, including the thyroid. As a patient who has been living with thyroid cancer on and off for the past 5 years, here is a non-exhaustive list of tips about treatment and how to manage, including questions to ask your care team and tips for your appointments as you go along your own cancer journey.

11 Tips for Navigating Thyroid Cancer

  1. Have a good relationship with your endocrinologist, as they will be treating you for life. 
  2. Make sure your values, morals, and opinions are respected as part of the treatment process. The cure isn’t the only part of the cancer journey. 
  3. Ask about different treatment options (i.e. surgical removal). 
  4. Inquire about potential side effects of each treatment and how to mitigate them, especially if you undergo chemotherapy and/or radiation. 
  5. Ask for clarity on medical jargon, such as thyroid-specific blood tests. 
  6. Bring in a list of questions to each appointment. 
  7. If possible, have a caregiver, such as a family member or friend, come with you to each appointment as a second set of eyes and ears. 
  8. Join support groups that are available both online and in-person. 
  9. Utilize your patient portal, if you have one, for messaging your care team, renewing prescriptions, and viewing lab and ultrasound results. 
  10. If you end up having to take synthroid, keep a diary or log of how you feel at each dose to be able to report back to your care team. 
  11. Advocate for yourself if something doesn’t feel right. 

As a patient in a new and very unique environment with a disease you never thought you would get, knowing how to navigate this beautiful, yet terrifying journey is hard. However, if you stick to your values, ask questions, create a strong relationship with your care team, and advocate for yourself, it’ll make the process a lot smoother. 

MPN Patient and Care Partner Share Clinical Trial Experience

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MPN Patient and Care Partner Share Clinical Trial Experience from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share their experience participating in a COVID-19 clinical trial. Jeff believes that if you get an opportunity to participate in a clinical trial, you should take it. There are so many new medications in the pipeline for MPNs and you can help change the standard of care for future patients.  

See More from Jeff & Summer

Transcript

Jeff:

Hi, I’m Jeff. 

Summer:

Hi, I’m Summer and hi, I’m Zelda. 

Jeff: And we’re your Network Empowerment Leads for the Patient Empowerment Network and we’re the leads for the myelofibrosis section, which Summer is a myelofibrosis patient. And we’re here today to talk to you about clinical trials. And we’ve had some experience, but what we’re going to tell you about today is not a trial that deals with myelofibrosis. But our experience in the COVID-19 vaccine trial for Moderna at University of California San Diego. And tell us about how it started, Summer. 

Summer: Well, I’ve never been in a trial test before, and neither have Jeff. We went to UCSD, to where it’s conducted, and they were very friendly, very nice, very encouraging. But the strange thing, one of the things is I thought there’d be a huge waiting room. And they took us right in, and the whole time we were there, I didn’t see anyone other than the staff. So, I went in one of the rooms, and various doctors and nurses and assistants came in to take blood, to take my temperature, to ask me medical questions, things like that. The whole thing took probably about an hour and a half, and they were very encouraging. And then the last person that came in said, well, I’ll be back in a few minutes, and I’ll bring the vaccine in. So, I thought, oh, I guess I made it. But then when they came in, he said, no, you consulted with another doctor, because I have myelofibrosis that could slant the test. So, I wasn’t able to sign up and help people. But I do remember another thing about COVID. I was in the first group, because I’m older and have a disease, to get the vaccine. And I remember it was at Petco Park in San Diego, and there were so many people there that people had to park blocks from there. And that’s fine. Walking is no big deal. There were a lot of really old people that could barely walk, and they were going, I’ll never forget that. 

And there was one woman that was very overweight. She was in a walker. The poor old thing could hardly walk. So, I remember I walked behind her the whole time, because I thought I can call for help if anything happens. But I still have that picture. And here’s Jeff’s view. 

 Jeff:

So, I went up with Summer to sign up for the vaccine test as well with UCSD. We thought we could make a difference and help. So, I went through the same, they gave everybody the same thing. Different doctors and nurses and assistants came in. They took your blood. They took your medical history and so forth. And then they went out of the room and left me there. And they came back in, just like Summer. And for me, they came back in with a hypodermic needle filled with vaccine or placebo. And they gave me the shot. And of course, they don’t tell you whether you had the placebo or the vaccine. And they sent me home. But before I went home, they had me load this little app onto my phone. And I have to fill it out every Sunday. I’ve been doing that now for about two and a half years, I guess. Whether you just got a couple of questions and you submit it. It’s part of their program. And they also periodically… I have to come back for other appointments. And they actually, of course, made a second appointment. So, I got the second shot in the Moderna combination. And they kept, each time I came back, they’d take blood. They wanted to see how the blood was forming antibodies, I guess. And so, I kept coming back. And they didn’t tell you what was happening until finally, I got an email that said the doctor was going to have a Zoom presentation or a web presentation. And basically, he came on and he gave the statistics that they had collected and said that the vaccine seemed to be working very well which was really nice to see. But we stayed in the… We would still stay with them because they wanted to see how long it lasted. And whether your antibodies would last. 

 So, I’ve been still going regularly. Eventually they gave us the third shot, the booster shot. And I haven’t had any word whether I’m supposed to have the next booster shot. I have an appointment with them in about two weeks to go. They call you back so they can check your blood. And presumably I might get another vaccine. So, it was a very interesting experience. And like Summer mentioned, I didn’t hardly ever see any people there except the staff. The place was clean. They were very, very friendly. It seemed to be well organized and run. And we felt happy. I felt happy to be part of the solution for COVID anyway. And that’s my experience. 

So, our thought to you all was if you get an opportunity to participate in a trial, take it. Especially for those of you with myelofibrosis, there’s a lot of medicines coming down the pipe. They may need some people to be in trials. If you meet the requirements, go ahead and take it. It’s a worthwhile experience. And you can maybe be helping medicine. That’s it for this week. I’m Jeff. 

Summer:

I’m Summer. I’m Zelda. 

Jeff:

See you next time. 

Summer:

Bye. 

Ivosidenib and Azacitidine for IDH1-Mutated AML

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There has been another significant advance in the treatment of Acute Myeloid Leukemia (AML) at least for the small subset of patients (6-10%) who have a mutation in one of their genes called IDH1 (isocitrate dehydrogenase 1).   

Until 5-7 years ago, the typical initial treatment (called induction) for patients with AML consisted of relatively high doses of cytarabine (Ara-C) and another chemotherapy called an anthracycline (usually either daunorubicin or idarubicin).  Cytarabine is given as a continuous infusion for seven days and a daunorubicin or idarubicin is given on the first 3 days (this is commonly referred to as “7 + 3“regimen). There are other regimens that are sometimes used although most contain cytarabine.  This regimen is effective, but quite toxic and usually reserved for healthier fitter patients (generally under 65 without comorbidities like diabetes, or certain heart conditions). 

In 2018, the Food and Drug Administration (FDA) approved venetoclax and azacitidine for use in older patients or those with comorbidities.  Earlier this year, FDA approved Iivosidenib (used in combination with azacytidine) for newly diagnosed AML patients an IDH1 mutation.  The approval was for “adults 75 years or older, or who have comorbidities that preclude use of intensive induction chemotherapy”.  This was based on a clinical trial reported in the New England Journal of Medicine (NEJM): Ivosidenib and Azacitidine in IDH1-Mutated Acute Myeloid Leukemia,.  Ivosidenib is not a brand new drug, it was approved in 2018 for relapsed or refractory AML. 

The current approval was based on a global, double-blind, randomized, placebo-controlled trial comparing AML patients with an IDH1 mutation treated with ivosidenib and azacytidine with patients treated with azacytidine alone.  The primary end point of the trial was event-free survival (EFS), defined as the time until treatment failure (i.e., the patient did not have complete remission by week 24), relapse or death.  The first group of patients, who received ivosidenib had an EFS at 12 months of about 37% versus 12% in the placebo group.  In addition, the median overall survival (that is half of the patients lived at least this long) was 24.0 months with ivosidenib and azacitidine versus 7.9 months with azacitidine alone.  This is a big difference, although there is still a lot of room for improvement.  In addition, there were fewer infections in the ivosidenib, group although there were more incidences of low white blood counts (neutropenia) and bleeding in that group. 

While this is good news, showing ivosidenib (Tibsovo) and azacitidine (Vidaza) is better than azacitidine alone, most patients with AML with an IDH1 mutation who are not good candidates for intensive induction chemotherapy during the time period of the trial would likely have been treated with azacitidine and venetoclax (Venclexta).  The combination has been shown to be much more effective than azacitidine alone.  My guess is that azacitidine alone was chosen as the comparison, since the ivosidenib trial started enrolling patients in March 2018 (presumably the protocol for the trial was completed several months before that) and venetoclax was not approved until November, 2018.  The question remains, which is better ivosidenib and azacitidine or azacitidine and venetoclax.  I believe we will probably never know.  Given that AML is already a rare disease and no more that 10% of AML patients have an IDH1 mutation, it is not likely such a trial would be done.  Instead, it seems more likely that trials will look at the 3-drug combination of ivosidenib, venetoclax and azacitidine.  Perhaps a trial with 3 arms may be done, comparing azacitidine with ivosidenib, or venetoclax or both.  I hope the 3-drug combination will be more effective than either ivosidenib or venetoclax combined with azacitidine.  If the side effects are not much worse, then standard therapy for AML patients with an IDH1 mutation who are not good candidates for intensive chemotherapy would become the 3-drug combination.  This would happen faster than first comparing ivosidenib to venetoclax and then comparing the better of those two to the 3-drug combination.   For younger healthier patients, ivosidenib is being combined with intensive chemotherapy in clinical trials.

Further reading: 

Ivosidenib and Azacitidine in IDH1-Mutated Acute Myeloid Leukemia, the original article from the New England Journal of Medicine (N Engl J Med 2022; 386:1519-1531). 

Ivosidenib and Azacitidine for IDH1-Mutated AML, mostly a repeat of the abstract of the above NEJM article, but also includes some commentary. 

Ivosidenib with Chemotherapy New Option for Some People with AML an article on Ivosidenib and Azacytidine from Cancer Currents: An NCI Cancer Research Blog. 

This AML Treatment Option is an Alternative to Induction Therapy an article on Ivosidenib and Azacytidine from PatientPower. 

FDA approves ivosidenib in combination with azacitidine for newly diagnosed acute myeloid leukemia an article about the drug approval, from Practice Update (registration may be required). 

Ivosidenib or enasidenib combined with intensive chemotherapy in patients with newly diagnosed AML: a phase 1 study, an article in Blood (Volume 137, Issue 13, April 1 2021) about a preliminary study of Ivosidenib and Enasidenib (for patients who have a mutation in IDH2) along with intensive chemotherapy (“7+3” induction, Ara-C consolidation). 

FDA grants regular approval to venetoclax in combination for untreated acute myeloid leukemia, an article from the FDA on the approval of Venetoclax for treating AML (October, 2020). 

FDA approves first targeted treatment for patients with relapsed or refractory acute myeloid leukemia who have a certain genetic mutation, an article from the FDA on the initial approval of Ivosidenib for treating AML (July, 2018).FDA approves first targeted treatment for patients with relapsed or refractory acute myeloid leukemia who have a certain genetic mutation, an article from the FDA on the initial approval of Ivosidenib for treating AML (July, 2018). 

#patientchat Highlights – The Power of Giving

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Last week we hosted a “The Power of Giving” Empowered #patientchat on Twitter. Take a look at the top tweets and full transcript from the chat.

Top Tweets

What does giving mean to you and how do you actively give?

What talents do you utilize when giving?

Who gives or gave to you that now inspires you to give to others?

The Power of Giving #patientchat

Full Transcript

Three Tests You Should Have Before Seeing a CLL Specialist

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What are three tests patients should have before seeing a CLL specialist? In the “What Tests Should I See Before Seeing a CLL Specialist?” program, expert Dr. Nadia Kahn from Fox Chase Cancer Center shares three tests that chronic lymphocytic leukemia (CLL) patients should get to assist with predicting each patient’s CLL progression, treatment response, and waiting period before starting treatment.

1. Fluorescence in Situ Hybridization (FISH) Test

In a fluorescence in situ hybridization (FISH) test, the function of fluorescence is used to identify genetic mutations from CLL and where the mutations have been relocated to. The information gathered from FISH testing helps your doctor determine your CLL prognosis and optimal treatment options for your specific CLL.  

2. Immunoglobulin Heavy-Chain Variable Region (IgVH) Mutational Test

In IgVH testing, immunoglobulin gene mutation status is checked for the expression in CLL cells. The IgVH mutational status then helps the CLL specialist determine which CLL subset the patient’s disease falls under – which helps in determining the disease progression that is likely to occur in that patient.  

3. TP53 Sequencing Test

In a TP53 sequencing test, a mutation in the TP53 gene – translated as tumor protein 53 – is searched for. Normal function of the TP53 gene helps prevent the growth of tumors. But when TP53 is mutated, it may lead to uncontrolled cell growth and then cancer growth. TP53 mutation can either be passed down from your parents or can result from environmental factors that cause a mistake during the cell division process. The result of the TP53 sequencing test will help determine CLL prognosis and treatment options.

By getting the three vital CLL tests of FISH, IgVH mutational, and TP53 sequencing tests, they can help in determining a CLL patient’s prognosis and best treatment options. If you’d like to learn more about CLL, check out our CLL information.

Is Whole Patient Care a Path to Health Equity?

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As part of our Patient Empowerment Network (PEN) Path to Empowerment, whole patient support is included in the path for patients. Our advocacy program called Rx for Community Wellness focuses on culturally competent whole person healthcare that treats the whole patient in tandem with existing care while also looking at health equity issues. As we prepare to launch into another series of Wellness Rx Meditation and Wellness Rx Nutrition programs, here’s a look at the programs and resources that are already available. The intention of these resources are to improve cancer care for all patients by providing meaningful mind-body tools that maximize well-being.

Equity Rx Webinars 

Unfortunately, not every patient is starting from the same level in their healthcare. Health equity topics must be addressed to achieve equitable care for all, and the Equity Rx webinar series have provided an opportunity to address some of these issues. In the Equity Rx webinars, we pulled together a panel that included a cancer survivor, a naturopathic doctor, and a public health scientist. The panel members discussed the importance of culturally competent whole person cancer care to work toward improved cancer outcomes for all patients. Some of the topics covered in the Equity Rx webinars include: 

  • Ways that healthcare systems can better work toward whole person care
  • Solutions to help overcome trauma and lack of trust to work toward healing
  • Advice from a cancer survivor on how to work toward optimal patient care
  • The effects of stress, anxiety, and depression on physical health
  • How environmental conditions and personal experiences can impact health
  • Existing barriers to diagnosis and a patient’s experience as a Mexican American
  • Barriers to culturally competent care and how to address barrier issues
  • Factors that whole person care examines and obstacles healthcare systems   pose to patient care

Survey feedback about the Equity Rx and Wellness Rx Meditative and Nutritional Tools have been extremely positive with 90.2% of survey respondents believing this program has given them a better understanding of the need for health equity. As more people become aware of health equity issues, they can also advocate on behalf of others to improve care for all patients. 

In addition, 82.7% of survey respondents agreed they are very likely to share their story with others to raise awareness about the need for equitable care after the Equity Rx program. And through the process of sharing their personal experiences, patients can not only help educate others but may also be able to work through some of the emotional load of their cancer journeys.

One survey respondent also came away from the programs with motivation to add holistic care to part of their care team.

My hematologist is pretty responsive, but I don’t have a holistic doctor, and I’d like to get one. This program definitely raised my awareness of equity issues. Sasha was great explaining her issues. Thank you!

Another survey respondent shared how the programs instilled motivation to take a more active role in their care.

I will make more of an effort to get my team members to read information that has been shared on my tests and progress.

Equity Rx Crowdsourced Resource Guide

PEN recognizes the value of educational resources and in gathering input from a wide selection of people – whether they are patients, care partners, or patient advocates. In the printable and downloadable Equity Rx Crowdsourced Resource Guide, whole person care is described with an explanation of why whole person care is important in improving health outcomes for all patients. Equity Rx survey highlights are also shown in easy-to-read graphics in the resource guide along with crowdsourced solutions for working toward equitable healthcare.

Is Whole Patient Care a Path to Health Equity?

Wellness Rx Meditative and Nutritional Tools

Whole person care is a primary tenet of holistic medicine, and nutrition and meditation practices are two ways to incorporate holistic care. Holistic care is one way that can support patients in maintaining healthy minds and bodies. In the Wellness Rx Meditative and Nutritional Tools, we created educational videos and transcripts to improve knowledge about meditation practices and nutrition to boost patient health. Meditation topics that were covered in the series include breathing, abdominal breath, chest breathing, body parts, body scan, complete breathing, joy, whole body, heart center, and breath counting. While nutrition topics covered in the series include the benefits of vitamins, minerals, carbohydrates, fats, protein, and plant-based diets. 

Access to health and wellness options are vital for all patients. We at PEN hope you can take advantage of the Rx for Community Wellness program resources and also share them with others to improve their care. Additional webinars and resources will be coming soon to help patients and care partners move toward improved empowerment, care, and support for their cancer journeys.

Disparities, not Despair – Organizations that Empower

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In memory and in honor of LaTisha Chong … Let’s change and improve the breast cancer research legacy for Black breast cancer survivors.

Yesterday, as I was preparing to post a brief blog, “Gotta look at this amazing website When We Tri(al),” I was stopped midstream by a New York Times’ 08.20.2022 newsfeed obit of Latisha Chong (01.23.1990 – 07.19.2022), Hair Stylist Who Helped Change Fashion, Dies at 32.  Chong, born in Trinidada/Tobago, was a renowned American hair designer and hair director for fashion designer Telfar Clemens. Tragically, she succumbed to metastatic breast cancer, as reported by her sister, Afesha, also a renowned hair designer.   

In honor of LaTisha Chong’s legacy for women of color with a history of breast cancer, PEN would like to showcase the organization and website When We Tri(al), which is dedicated to exclusively focusing on advancing Breast Cancer (BC) science for Black women, with a primary focus on ensuring much greater participation in clinical trials and survivor rates.  

Breaking down barriers to inclusion drives the activism of When We Tri(al), given historically insupportable and racist statistics: namely, the percent of Black women in BC clinical trials is abysmally low and the disparity statistics around BC in Black vs White women is alarming. Namely, Black women are 41% more likely to die of breast cancer than White women. When Black women are not included or are grossly under-represented in clinical trials, as at present, their story and the science behind their Black BC physiology will fall short of developing the full picture which, in turn, stymies the development of BC treatments that reflect what Black bodies need to survive and thrive.  

To learn more about disparities in the statistics of health and health care in general, check out the website Diverse Health Hub. Diverse Health Hub is dedicated to “exploring social determinants of health, increasing cultural competence among providers, and raising awareness about the roadblocks to equitable care.”  Their work and website includes patient, provider, and community portals. 

Also, I can’t help but note another organization that featured When We Tri(al)’s work. Young Survivors’ Coalition, YSC, was founded in 1998 by women who had been diagnosed with breast cancer under the age of 40. Dedicated to addressing the unique needs and the quality of life of young adults affected by breast cancer, you may find lots here if your demographic is that of a young breast cancer survivor (or even if it is not!).  

And, again, in honor of LaTisha Chong, learn more about these organizations and support/learn from their work, as well as PEN’s.  We are all in this together … the empowerment of each one of us requires vigilant and dogged inclusiveness!  

As a breast cancer survivor, I was interested in and tried to learn more details about LaTisha Chong’s experience and background. I could not find any details about the type of her breast cancer (e.g., whether it was triple negative as many young women, especially women of color, are diagnosed).

The story behind her initial 2012 diagnosis was reported in Air Mobility Command following Chong’s returning from senior airman deployment with the US Air Force in Qatar.  Her life trajectory comes full circle from watching her hair stylist mother work week-end salon marathons in Brooklyn, through Air Force service and deployment, to subsequently adopting a cancer survivor/fighter mode, through the last several years of building a following as cutting-edge hair designer for Black clients and celebrities, including creating the hair design for Met Gala participants; and finally, her last design shoot, the Serena Williams’ cover for Vogue’s September 2022 issue. (See Vogue’s tribute to Chong.)

Additional Resource: https://www.breastcancer.org/podcast/clinical-trial-diversity 

Tribute to Outgoing PEN Board Member Jack Aiello

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We at the Patient Empowerment Network (PEN) have been honored to have Jack Aiello as a member of our Board of Directors. Jack has served as a PEN board member since its inception in 2009 as an advocate and ambassador for the organization within the multiple myeloma community. In this role, he has helped PEN forge new partnerships and funder relationships to advance our mission and provided thought leadership toward PEN’s patient-focused strategic direction. In addition, Jack has invested his deep expertise and time to the PEN’s development of empowerment and education resources for those impacted by multiple myeloma.

On reflecting upon his experience on PEN’s board, Jack shares, “PEN has been successful standing on its own. They looked at opportunities to fulfill needs of the cancer community that weren’t being taken care of. I’ve always been impressed with the small staff that PEN has had in terms of how much they have gotten done. That’s exciting to see.”

“I watched PEN’s development of the digital sherpa® program which provides digital literacy skills training to older adults impacted by cancer. There’s clearly a need for it, and it’s been a very successful educational program.” To-date, PEN has trained dozens of community-based organizations across the U.S. to offer the digital sherpa® program to their local communities, through which more than 10,000 older and underrepresented cancer patients and care partners have learned to use technology to improve their treatment outcomes.

PEN also has programs addressing issues related to the psychosocial and financial impact of cancer. Jack sees the value in these types of programs as well as PEN’s disease-specific resources, “I think what PEN has done really well is dually serving all cancer patients by providing programs that are beneficial no matter your type of  cancer, as well as programs tailored to your diagnosis.  I can look up information on almost every type of cancer and quickly know where to start and what’s new.” For many of the cancer types, Empowerment Lead volunteers contribute their lived experience to PEN’s programs. Jack shares, “I know the Multiple Myeloma Empowerment Lead, Lisa Hatfield, very well. She has helped to develop a video series that addresses specific issues related to multiple myeloma, such as “How long do I have to take a maintenance treatment?” Some of them are just 2-minute videos to make them easy to digest, but they’re effective videos with actionable steps that go into detail, so they provide a lot of information, quickly.” 

In October 2022, Jack will transition his seat on the Board of Directors to Lauri Bolton, but he will remain as an honorary Board Emeritus. Thinking back over the years, Jack feels a sense of gratitude. “I’ve met a number of terrific people through Patient Empowerment Network. They’ve been across different cancer lines, and I’ve enjoyed that. I’ve enjoyed the interactions that I’ve had with PEN’s staff and the two Executive Directors since I’ve been on the board. Both have been wonderful women who were very hard-working and did a lot with a limited amount of funding.” The PEN Board was also Jack’s first Board of Directors experience. He’s been asked to join other boards over the years, but the timing of joining PEN’s board worked out best for Jack. “I’ve enjoyed my experience as a member of the PEN Board, and I appreciate that I’ve gotten to know some really good people. PEN has certainly grown as an organization, and I’m excited to see what the future holds for their work serving people impacted by cancer.”

Home Safety Tips for People with Cancer

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Cancer and its treatment can cause you to feel fatigued, dizzy, and weak. They both can contribute to a loss of balance and an increased risk of infection. Needless to say, many people with cancer and even those going through treatment need to prioritize staying safe and secure at home.

Thankfully, there are plenty of safe, effective, and easy ways you and/or your caregiver can help you maintain your safety at home. It should be a sanctuary of comfort, and a place where you shouldn’t have to worry about your condition limiting you in any way. Rest and relaxation are important when it comes to recovering.

So, how can you ensure that relaxation at home by making sure it’s safe?

Let’s cover a few home safety tips you can use to maintain your independence and prioritize your well-being while dealing with cancer or going through treatment.

Home Modifications

One of the easiest ways for a person with cancer to boost their safety at home is to make some basic modifications. In most cases, there’s no reason why you can’t enjoy your independence with a few simple swaps. Some of the easiest ways to improve your safety by modifying things in your home include:

  • Removing rugs
  • Creating clear pathways in rooms
  • Increasing the lighting
  • Installing shower grab bars
  • Utilizing small ramps throughout the home

As you can see, it doesn’t take a lot of DIY know-how or experience to make these changes, but they can end up making a big difference in your safety. You’ll reduce your risk of tripping and falling, and you’ll have more support when you’re doing everyday tasks like showering or going from room to room.

Hire a Caregiver

If you’re a person with cancer reading this and you don’t already have a caregiver, it might be time to consider hiring one. It doesn’t necessarily have to be a permanent situation, but a caregiver can help with everyday tasks and ensure your safety while you’re there. You’ll also enjoy some wonderful benefits, including:

  • Companionship
  • A greater sense of dignity
  • Better health tracking
  • Reassurance
  • Flexibility

Caregivers can do just about anything. Maybe you need someone to run errands and do shopping for you, or just for someone to keep your environment clean. You can even consider working with a caregiver who has a medical background, so they can help to administer medications and make sure you’re staying active. Most home caregivers are well-versed in things like first aid, and they’ll know how to keep you safe or provide immediate assistance in case of an emergency.

There are countless caregiving sites online where you can find someone who will work with you and meet your needs. Or, consider asking your doctor for any recommendations they might have. Your caregiver could end up being a very close friend. Loneliness can be a huge problem for people with cancer or those going through treatment. We saw the consequences of that throughout the COVID-19 pandemic. A caregiver will not only be a companion, but a built-in support system that can make your days easier, safer, and more vibrant.

Steer Clear of Infection

People with cancer are often at a greater risk of developing an infection, which can complicate both the illness and treatment and make you much sicker. Keeping your home clean and as disinfected as possible is imperative. You shouldn’t have to feel like you’re walking on pins and needles in your own home because you’re worried about developing an infection.

However, you might not have the strength or energy to clean every day, either. A caregiver can help with that, but you can also do things to make life easier on yourself and keep harmful substances (and critters!) out of your home.

For example, you can reduce the risks of rodents and pests getting into your home and carrying in harmful bacteria by sealing up cracks and holes, making sure all food particles are cleaned up, and cleaning yourself and your clothes once you get inside if you’ve been spending some time outdoors. Being outside in nature is a fantastic way to boost your immune system, reduce stress, and improve your energy levels. But, don’t put yourself at risk of getting sick, injured, or bringing in bacteria. Take the proper precautions to protect yourself.

There’s no reason why people with cancer shouldn’t feel safe at home. Change can be hard to deal with, especially when it comes to modifying your home or bringing someone new in to help you with everyday tasks. However, your health needs to be your top priority, and to stay healthy, you also need to stay safe.

Keep these tips in mind and don’t be afraid to reach out for help if you need it. With a few changes (and additions), you’ll feel safer and more comfortable at home than ever.

This Breast Cancer Awareness Month I Want You To Know This Truth

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With the pink ribbon avalanche that arrives every Fall, we know that Breast Cancer Awareness Month (BCAM) is underway. Although BCAM has been credited with raising public awareness of breast cancer, there is nevertheless growing frustration with its off-balance approach to raising awareness, with many key messages getting lost in a sea of ‘pinkwashing’.

I reached out to my network of breast cancer patient advocates to ask them what truths people should know about the disease. I asked them to complete the sentence below:

This Breast Cancer Awareness Month I Want You To Know This Truth….

The following is my own response.

“This Breast Cancer Awareness Month I want you to know that breast cancer isn’t the ‘good’ kind of cancer.  There is no such thing as a good cancer. Cancer, whatever its form, exacts a huge toll on our bodies, our minds, our emotions, and how we will live out the rest of our days.”

Below is a selection of responses I received from the breast cancer community.

“This Breast Cancer Awareness Month I want you to know that breast cancer is different for each person. Some of us don’t “get over it” – it is an ongoing thing in our lives.” – Linda Cantanzaro Boberg

“We don’t need to be reminded this is Breast Cancer Awareness Month Our awareness begins the moment we are diagnosed or find out we are at high risk of getting breast cancer. What I feel strongly about is connecting the community year-round to listen, educate, and be supportive without judgment and without a personal agenda.” – Terri Coutee

“The truth, or at least my truth, is this: breast cancer is a string of losses. It’s not pink. It’s not pretty. It’s not party-like. It’s a horrible disease, something to endure, not an enlightenment program. No need to smile your way through it. Be real. Be you. It’s enough.” – Nancy Stordahl.

“It’s a shame that BCAM has become so commercialized. Pink products are being sold by many scamming companies masquerading as helping breast cancer. Buyer beware before purchasing these products. The truth is this disease is killing over 40,000 metastatic women and 400 men each year in the US alone. Early and late-stage patients are forever daunted by their costly treatments that cause unimaginable side effects. There are too many deaths of friends and family and there’s nothing pretty about losing loved ones to this terrible disease. We must do more especially for Stage IV.” – Susan Zager

“This Breast Cancer Awareness Month, I want you to know that trivializing and sexualizing breast cancer is demeaning for those who’ve gone through treatment for both primary and secondary stages for this deadly, genderless disease. For men, it means a delayed diagnosis and a poorer prognosis.” – Rod Ritchie

“Each breast cancer patient’s journey is unique. Early detection and awareness are key to saving lives. The right support and ongoing research are vital in all the phases of the breast cancer journey.” – Nicole Fuller

As a fitting end to this post, Audrey Birt responded with a poem.

Breast cancer is a thief

Stealing health

Stealing peace of mind

Stealing future dreams

 

Breast cancer changes your body

Changes your hopes

Changes your friendships

Changes your energy

 

Breast cancer makes you grieve

for so much

But

cancer showed me I’m loved

I’m so grateful for that

At the end – and the beginning and all way through

it’s really love that matters.

Closing Thought

This month is a time when it’s important to honor your feelings and emotions. It is your choice to celebrate or not to celebrate BCAM; if you want to sit out this month or use it to educate others in a different way, do so. Everyone should be able to experience BCAM in the way they need and want. Above all, don’t let breast cancer awareness be confined to just one month. Our work as advocates continues long after the last pink ribbon has been tucked away for another year.