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Welcome post


I am Chris and I am writing this welcome post in the name of my wife which was diagnosed few weeks ago. We want to give big thanks and hugs to the whole community. This site gave us knowledge and thanks to that some peace in mind. I also wanted to post some links that I found regarding trails for venetoclax + tki's that was discussed here some time ago.

So she's 33 and my wife's primary care doctor figured out that something is wrong in the middle of last year. She tried to find cause for rising wbc. Around 14k in Mar'18 (but it was flu season back then), ~ 11k in May'18 but still monitoring also her thyroid markers (Hashimoto's thyroiditis). Doc ordered additional check-ups (chest & abdominal scan) - nothing found. Around September she ask us to meet with hematologist (wbc around 13k, plt 457). So my wife had FISH from peripheral blood (Ph positive) and then bone marrow biopsy. At that day wbc 19.5*10e9/L and plt 603. So from what we've read here she was diagnosed quite early. FISH gave 91% cells with BCR/ABL1 gene fusion (nuc ish(ABL1,BCR)x3(ABL1 con BCRx2)[91]/(ABL1,BCR)x2[9]). Bone marrow biopsy was just to confirm (no PCR tests at this stage) and is required to start treatment (and free meds). Before starting treatment she was asked if she's willing to participate in some trail (mRNA role in CML) so she had biopsy once again. 

She's taking generic Imatinib 400mg. Some side effects:

- she was tired at the beginning and still is at the end of the day, but that's because she is kind of person who is not able to sit down and do nothing. She's taking care of our kids, do stuff at home etc;

- nausea

- bone pain

Of course diagnosis was really hard for all of us, but for my wife especially. But she is the strongest person I know so we will manage.

Currently after a little more then one month of taking drug she has wbc 3.73*10e9/L, plt 225*10e9/L, RBC 3.6 10e12/L, HGB 6.9 mmol/L, ALAT 58U/L and AspAT 37 U/L. Hopefully RBC and HGB will not drop anymore and ALAT not rise anymore.

Beside imatinib she's taking Hepa merz 3000 twice a day, essentiale forte. And now also Vit D 2000 and milk thistle. Thanks to Scuba posts she decided to make test that show vitamin D low level (18ng/mL).

Next biopsy in few weeks.

Once again huge thanks for this site which helped us a lot.

Best regards

Hi Chris

I have just joined this site after 18 years of battling CML.I was diagnosed in Feb 2001 after months of suffering the usual symptoms tonight sweats,bruises ,loss of weight.I was out on the Clinical trial of Imatinib that was being carried out in City Hospital Nottingham,and here we are 18 years later still having three monthly tests but with each test showing it is now almost moleculary undetectable, so to those amongst you who struggling with CML have faith there is hope


Hi Tim

That's great to read that you are still fit and well 18 years after starting treatment. Thanks for taking the time to share that with us because it's always uplifting when you hear someone is doing really well, it gives the rest of us that have been recently diagnosed a lot of hope for the future.

All the best to you and your health for the next 18 years and more :)