12 replies to this topic

[MACELPatient]

Hey all

Just checking in.  It will be 3 years since my diagnosis on March 5th of this year.  Happy Anniversary!  I must say that my life is as normal as it will ever be.  I am working my normal job, normal hours and I am also active in my daughters soccer coaching, and taking her to practices 5-6 days a week.  I am also playing soccer 1 night a week as well in a local coed group.

As far as my disease goes, I did have a "positive" FISH test last summer but it was still considered negative for the mutation (1 of 300).  I was retested and it cam back 0.  I take my 400mg Gleevec daily.  I have been playing around with when I take it to see home it impacts my side-effects.  They are minimal and are typical ones seen with Gleevec.  GI issues as well as minor fatigue, minor nausea and edema. Nothing I can't manage.  My blood counts have been pretty stable.  My Eos % have been up as of late but I have also been sick this winter and we do have a new cat in the family, so allergies and sickness can effect those levels.  The Eos levels have been in the 7-8% level as of late which is high but since my FISH tests have been negative the last 2 times, they chalk it up to the allergies and sickness.

It still can be frustrating at times as there is not a lot of access to free information regarding my disease, treatment and long term prognosis.  I've always used CML as my basis knowing that my mutation occurs further down the blood chain which makes it more susceptible to inhibitors such as Gleevec and others.  I am my own advocate for my disease and i do all that I can to find information on it so that I may continue to provide help/hope for others with what I have if they may ever stumble into this Forum.  One thing I do love is to talk about my disease and how amazing it has been with the help of drugs like Gleevec.

Thanks to all and best wishes to you.

[MACELPatient]

Well I have my next appointment coming up in a couple weeks time.  Nothing new to report.  Still the same GI issues, minor edema.

One thing of note, I am changing insurance come tomorrow and Gleevec will still be covered but just through a different mail-order Pharmacy.  I just need to have the paperwork done at my appointment.  Good news is the deductible is lower so it will be lighter on the wallet.

[GerryL]

Good luck with the blood test.

[Trey]

Bob,

Good to hear from you again that you are doing well.  It is interesting to see how your side effects mirror those of us with CML.  It was thought for some time by researchers that some TKI side effects were caused more by the CML than by the drugs, but as other diseases are treated with TKI drugs (CEL, GIST, etc) it is clear that the drugs are the main culprit for most side effects (as we knew already). 

For those who want to understand a little about Chronic Eosinophilic Leukemia (CEL), it is a type of leukemia where the eosinophils are out of control.  Eosinophils are white blood cells and part of the myeloid (granulocyte) family of white blood cells.  The disease is different than CML, but TKI drugs which inhibit PDGRF (like Gleevec and others) can treat some types of CEL where the inhibition of PDGFR reduces the over-production of eosinophils.  Eosinophils are WBCs which primarily deal with allergens and parasites in the blood, which is why they can be high when allergens are elevated in the environment.  For those of us with CML the PDGFR inhibition is just an unwanted cause of side effects and does not help us, but it is the main reason it helps some CEL patients. 

http://www.cancer.go...e/Patient/page7

Bob  mainly "talks to himself" over on the LLS "Rare Leukemias" page since there are no others with his disease on here.  He has chronicled his journey so others coming along in the future can read his posts.  Good work on that, Bob.

http://community.lls...atus[published]

[MACELPatient]

Thank Trey.  My side effects are most definitely attributed to the Gleevec.  Interesting to see what foods trigger worse ones(fatty foods, grains, sugars, etc...)  I avoid Acetaminophen like the plague.  That stuff iteracts with Gleevec like nobodies business.  Lesson learned early on with that.  I take Naproxen and occasionally Ibuprofen instead when I have any aches or pains, which is not that often.

I live a normal live for the most part.  I work full-time, I coach soccer, am generally active around the house doing whatever and I take care of my wife and child.  I eat well(even grapefruit on occasion), drink my love,  beer, but avoid hard liquors and have put weight back on.  Honestly I feel blessed that it's been "better" than I expected.

The emotional aspects still hit me on occasion but for the most part I am able to almost forget I even have leukemia.  I love telling my story as it help others who are or may be going through what I have and seeing as it is such a rare disease.  Still no hard numbers on it but they say only a few hundred cases a year.  Prognosis is generally favorable given the efficacy of the drug is stronger than it is with CML but I am still blazing a trail with the treatment.  2008 was when it was 1st approved for CEL an I was diagnosed 2 years later so in some ways I am like Susan who has been taking Gleevec for CML for more than a decade.

Keep doing what you're doing here.  It's appreciated by many, myself included.

Bob

[BHPenfold]

and I'm hanging onto your shirt tails!!!

[MACELPatient]

Hold on tight!  Going to be a loooooooog ride.

Good luck on your upcoming test.

[MACELPatient]

Results of my CBC for 3-1/2 yr appt

WBC - 7.4

RBC - 4.65

Rgb - 14.8

Hct - 42.5

MCV - 91

MCH - 31.8

MCHC - 34.7

RDW - 14.7

Neuts - 51.4%

Lymphs - 37.2%

Monos - 4.4%

Eos - 6.2%* ( slghtly high but normal for me given asthma and allergies)

Baso - 0.8%

Plt - 218

Liver enzymes normal

No we wait for FISH results.

[Trey]

Looks good, even EOS given the CEL.  Which FISH(s) do they do on you, just the FIP1L1-PDGFRA ?

[MACELPatient]

Thanks Trey,  I have a higher baseline on my Eos %.  6-7% has been about it.  The FISH test they run looks specifically for the fusion gene.  I have no reason to think it comes back anything but negative.  I may want to try a dosage reduction(100mg) of Gleevec in the next year or so to see if I can maintain, as studies have shown, and to also see if it reduces some of the "crappy" side-effects.

[BHPenfold]

Just had my tests back - no evidence of the FIP1L1-PDGFRa mutation!!! Yippee! Now I just have to deal with this persistent rhinitis which has plagued me since before diagnosis.... Anyone else find that their allergies seem to be massively compounded while on Imatinib, or as a result of HES/CEL????

[MACELPatient]

Have you had any testing done to see what you're allergic to?  Pets?  Pollens?  I don't find mine to be any worse on the drug.  I know I am allergic to most pet danders but I try to avoid contact as much as I can an make sure to wash my hands after I do.

Oops, forgot to add, a huge congrats on the results!

[Happycat]

Get allergy tested. Even if you had it a few yrs ago, you could have picked up an allergy to something new. I ended up with an allergy to birch trees for ONE year!  It showed up on my allergy test, so we added birch pollen to my allergy shots, then on the testing for the following year, it was gone. Haven't had it back since. Weird, weird, weird, but glad its gone.

Traci