My MCAS Rx: Is Gleevec (imatinib) A Good Option For Me?

I’ve been debating talking to my immunologist about trying Gleevec (imatinib) if the seven (!) medicines I’m on don’t keep my CD+/KIT- mast cells in check.

There are a few reasons I believe I’m a good candidate for imatinib, mostly because I’ve got a lot of TNF-driven inflammation.

At the moment I’m doing pretty good again, especially after adding Singulair (montelukast) but I still have the granuloma annulare rash, which tells me my mast cells are dumping not just TNF, but everything else still.

I am still easily triggered if I leave the house so I’m an unenthusiastic hermit. I’d love my life back. Plus, it’s always good to have a Plan B because who knows what tomorrow brings with this disease!

So what is Gleevec (imatinib)?

Gleevec is a tyrosine kinase inhibitor and an antineoplastic agent. Chemotherapy — It can treat leukemia and other kinds of cancer and related diseases.

My initial concern was cost, but then I saw the word CHEMOTHERAPY and my heart skipped a beat. A little over a year ago, I thought all I had was a milk allergy!! Now I’m reading about options to treat my MCAD and they include chemo?

Great.

Anyway, as far as cost, the cromolyn sodium is thousands a month without insurance and I just pay my regular $15 co-pay so maybe the imatinib will be similarly covered. I have no clue, but it’s worth investigating if someday I have to take this drug. The generic form would surely be covered, if one exists.

Of course I only (ha!) have MCAS, although I did have some symptoms of SM including CD25 + BMB and a skin lesion that was borderline UP, and in Dr. Afrin’s book I’m reading he administers low-dose imatinib to quite a few MCAS patients.

So I did a little research about Gleevec and found this article on PharmacyTimes.com from last summer:

The generic imatinib mesylate tablets come in 100-mg and 400-mg dosage strengths and are indicated for the following patient populations:

·      Newly diagnosed adult and pediatric patients with Philadelphia chromosome positive chronic myeloid leukemia (Ph+ CML) in chronic phase
·      Patients with Ph+ CML in blast crisis, accelerated phase, or in chronic phase after failure of interferon-alpha therapy
·      Adult patients with relapsed or refractory Ph+ acute lymphoblastic leukemia
·      Adult patients with myelodysplastic/myeloproliferative diseases associated with platelet-derived growth factor receptor (PDGFR) gene re-arrangements
·      Adult patients with aggressive systemic mastocytosis without the D816V c-Kit mutation or with c-Kit mutational status unknown
·      Adult patients with hypereosinophilic syndrome (HES) and/or chronic eosinophilic leukemia (CEL) who have the FIP1L1-PDGFRα fusion kinase (mutational analysis or FISH demonstration of CHIC2 allele deletion)
·      Patients with HES and/or CEL who are FIP1L1-PDGFRα fusion kinase negative or unknown
·      Adult patients with unresectable, recurrent and/or metastatic dermatofibrosarcoma protuberans
·      Adjuvant treatment of adult patients following complete gross resection of Kit-positive gastrointestinal stromal tumors

The most frequently reported adverse reactions for imatinib mesylate in clinical trials were edema, nausea, vomiting, muscle cramps, musculoskeletal pain, diarrhea, rash, fatigue, and abdominal pain. Serious adverse reactions include edema and severe fluid retention; anemia, neutropenia, and thrombocytopenia; severe congestive heart failure and left ventricular dysfunction; severe hepatotoxicity, including fatalities; fetal harm when administered to a pregnant woman; growth retardation in children and preadolescents; and tumor lysis syndrome, including fatalities, among others.

There have also been reports of motor vehicle accidents among patients receiving imatinib mesylate. Patients may experience dizziness, blurred vision, or somnolence during treatment.

 

Whoa. Look at those side effects!! That alone makes it something I don’t really want to consider now unless I run out of options here. Of course this is just my personal choice/experience with mast cell disease and this isn’t meant to be taken as medical advice so if you have MCAD, or suspect you have it, talk to your doctor about Gleevec.

As for me? Gleevec may be a good option for me now or in the future, but I am not ready to risk those side effects just yet.

For now I think I’ll just concentrate on finding the right combination of my other medicines, which are working at the moment and have few side effects (dry mouth seems to be the worst), and hope that I never have to go on Gleevec (or imatinib) unless it’s all I have left to try.

 

xo Michelle Dellene

 

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