November 30, 2020 at 1:32 pm #100658PiperParticipant
Thank you Andrea for creating this FB group. Your story is inspirational. I joined the group to learn more about CC because my husband was diagnosed in May. He is currently taking Pemazyre and the FB site has provided me with such valuable information for navigating the medical issues – financial, emotional, and physiological – of this disease. You are appreciated!
November 30, 2020 at 12:14 pm #100657andreafpParticipant
- This reply was modified 3 months, 1 week ago by Piper.
I’d like to add to my previous “intro” post that if your clinician has recommended Pemazre as a potential treatment option for you, that the drug company has a website where the information is laid our for the doctor and the patient to fill out forms to apply for financial assistance to pay for the cost of the drug, if needed.
To learn more, you can click on the link below. NOTE: even though the website currently states that Medicare patients are excluded from applying for the IncyteCares assistance program, that policy has been changed. MEDICARE patients can now apply as well to see if they are eligible for financial assistance to cover the cost of the drug. They will be updating their website with the details about the steps medicare patients and their clinicians need to take to apply—I don’t have a written/electronic source to point you to to confirm this yet. However, I received verbal confirmation from Nessie, an Incyte employee who is one of the folks who helps patients over the phone to go through the application process.November 30, 2020 at 12:06 pm #100656andreafpParticipant
My name is Andrea. I was Dxed with stage 4 metastatic Intrahepatic Cholangiocarcinoma in late April 2016 with an 11.5cm multifocal mass of over 20 tumors covering most of the right lobe of my liver and a portion of the left along with a few small lung lesions. I received multiple opinions from Cholangiocarcinoma Specialists at major cancer centers. It was determined I was un-resectable. I decided to begin my treatment with the Gemzitabine/Cisplatin chemotherapy combo that was the standard of care at the time for patients like me. I underwent 9 months of chemotherapy—the last few months of that time my oncologist eliminated the Cisplatin as he determined I’d reached toxicity. The chemo regimen as a whole reduced the bulk of my tumors by about 40%. For my 2nd line treatment, I was given local radiation to my liver (Y90) in order to shrink the tumor mass further. This served to decrease the mass. 2 months later(exactly 1 year into my Dx), I had a liver biopsy and the tumor tissue from that biopsy was sent out to Foundation One for Genomic Profiling. It was determined that my tumors harboured the FGFR2 fusion mutation. After researching treatment options, I enrolled in Incyte Pharmaceutical’s FIGHT202 phase 2 trial of an FGFR2 inhibitor oral drug at the Mayo Clinic Site in Phoenix, AZ. That drug shrunk my remaining tumors for the first 6 months or so. After that, my tumors remained “stable.” At different points while on this drug, my current lesions have “waxed and waned” from scan to scan, meaning lesions might grow a bit or shrink a bit. However, I’ve learned that with metastatic disease, small and slow growth like this can be considered reason to “watch and wait” rather than jump ship to a new treatment. The side effects were and still are much less severe than the side effects I experienced from the Chemotherapy. There are multiple FGFRf2 inhibitor drugs in the same class that are currently enrolling patients in clinical trials today (11/2020). In late April 2020, the FGFR2 inhibitor drug I’ve been on (INCB/Pemigatinib/Pemazyre) became the first FGFR2 inhibitor drug to be FDA approved to treat Cholangioc patients. It was approved ONLY FOR patients who have the FGFR2 biomarker AND who have tried and “failed” chemotherapy. There is now a phase 3 trial currently enrolling called FIGHT302 whose goal it is to determine whether Pemazyre has efficacy as a first line treatment (meaning, will it work just as well if patients take this drug instead of the traditional Gem/Cis chemo combo).
I have been on this same treatment—Pemazyre—for 3 1/2 years now with manageable side effects and with a high quality of life. I am no longer taking this drug as part of a clinical trial. It’s now prescribed for me by my oncologist. There was an area of slow but “creeping” growth in my liver that we were watching over a 6 month period. My oncologist decided that it was concerning enough to intervene. As a result, I underwent, at her recommendation, a SIRT procedure (local radiation). I discontinued Pemazyre for the week prior to my procedure and for an additional week in order to recover. Then, I resumed my regular Pemazyre daily treatment (One 13.5mg pill per day for 2 weeks in a row followed by a 3rd “off week.). This was in August. I had another tissue biopsy which was sent away for molecular profiling. It was determined I still had the FGFR2 mutation. No other relevant targetable mutations were identified. I also have had regular liquid (blood) biopsies along the way (I believe I’ve had 8 or 9 in total in the last couple years). No FGFR2 known resistance mutations were identified through those tests.
I will be 50 years old next month (December). I don’t have any major co-morbidities. A year into my diagnosis, I made the decision that barring any major scientific advancements, I would keep as my treatment goal– “extension of life, preservation of quality.” Yes, I get tired and sometimes need to nap/or lay down and rest in the afternoons. Yes, my hair has thinned and I’ve lost hair along my hairline. Yes, I now need to see a podiatrist regularly to manage my toenail and nailbed changes and to make sure my toenails don’t become infected. And yes, I need to be extra careful about my eye health—staying super hydrated, using eye drops, having an eye exam every 2-3 months to check my retina. I’m unable to say I’m “NED.” I have no guarantees from scan to scan(I’m scanned every 12 weeks). And I am not cured. BUT—-I’m able to get my 7-10,00 steps of walking in most days without any pain or distress. I’m able to spend time with my husband, my 15 year old and my 18 year old. Able to put up holiday decorations. Cook dinner for my family. etc. etc. I accept the fact that at some point–sooner or later–I will have to switch to another treatment. Until then, Im grateful for every day I have with my loved ones as well as the very special relationships I’ve made and continue to make in the Cholangiocarcinoma “world”through my volunteer work as a patient/reserach advocate with the Cholangiocarcinoma Foundation.
Soon after Pemazyre was FDA approved, I started a closed Facebook Site called “Pemazre-FGFR2 inhibitor” to be a forum that was/is open to any stakeholders (patients, clinicians, caregivers, patient advocates, etc) to share information about this new drug and the current and future benefits/potential benefits for Cholangio patients with FGFR2. The site’s been up for about 8 months. Anyone is welcome. There is a wealth of information on the site by patients and their caregivers who are taking Pemazyre. They/we share experiences managing side effects and navigating insurance coverage. Some folks have also joined who have ICC and the FGFR2 biomarker or who have a loved one who is in treament, in order to listen in on the conversation to educate themselves on Pemazyre as a potential future option and to compare it to other FGFR2 inhibitors currently enrolling patients in clinical trials. I also share regular updates/highlights on the Cholangiocarcinoma Patients only Warriors closed FB group as well as the Cholangio Targeted and Immunotherapy Group. If you would like to be part of the Pemazyre FB group, the patient only warriors group, or the Immunotherapy/Targeted treatment CC group, just type the group name in the FB group search bar.
I respect the fact that some people are not interested in joining FB. In fact, I only joined FB in order be a part of these closed sites. I would be happy to give updates in this forum as well for those of you who are not on FB.
I’ve lost many Cholangio friends through the last 4 1/2 years since being diagnosed. I’ve also seen “miracles” occur—patients who despite the odds happen upon the right treatment at the right time. I consider it my privilege and my obligation to give back and do what I can to assist others through this difficult journey. As I’m also in treatment, I have learned to accept the fact that the level of my involvement must “wax and wane” depending on my own health, as well as the other obligations in my life to my kids, my husband, and my elderly parents who I am also a caretaker for. However, I will continue to be involved as much as I can.
Sending you all hope and love during this difficult holiday season.
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