31 replies to this topic

[Kresendis]

Thank you all so much. I really am looking to get a 2nd opinion soon. I'm trying to get an appointment with Dr Talpaz from the University of Michigan. I'm curious as to how long it takes for counts to become normal again usually? His counts were normal after about 10 days and there are no longer blasts in the blood. Is that usually what happens? I know Trey said that even if it goes away it always comes back. I also have some test result papers I was wondering maybe you could look at and tell me what you think Trey. They aren't really telling us much info such as about mutations and so forth.

[Kresendis]

Today, 09:20 PM
Thank you all so much. I really am looking to get a 2nd opinion soon. I'm trying to get an appointment with Dr Talpaz from the University of Michigan. I'm curious as to how long it takes for counts to become normal again usually? His counts were normal after about 10 days and there are no longer blasts in the blood. Is that usually what happens? I know Trey said that even if it goes away it always comes back. I also have some test result papers I was wondering maybe you could look at and tell me what you think Trey. They aren't really telling us much info such as about mutations and so forth.

[Trey]

The chemo induces what might be viewed as a "false response" (my term -- trying to communicate clearly).  TKI drugs attack the problem.  Chemo attacks the symptoms.  The Vincristine knocks back the leukemic cells very well the first time it is used.  Each subsequent time it becomes less effective, in general terms.  The chemo will eventually quit working altogether.  Timeframe differs per individual, but months, not years.  So his current bloodwork is a false reading of his disease status.  Do not trust it.

 

You can use the personal message system here to send anything to me you want me to read.  Click on my avatar/name, and then click the pulldown to find the personal messenger.

[Kresendis]

Thank you very much Trey.

[WiscoTex]

Hi there, I wish I could give you a hug! My husband and I were on this roller coaster in the fall of 2014 when I was 4 months pregnant with our first child. I really can't give you any medical advice except that blast crisis is a tricky animal and just to trust your doctors. Most of the information doesn't apply since most people are diagnosed in chronic, but all of the blast crisis info is also very scary since not too many people fall into this boat and move to this phase after they have stop responding to TKIs. My best advice is to take it day by day, that's all you can do. Get through these initial few months and hopefully by then your path will be clear and you will just have to buckle up and get through he ride. My husband is currently PCRU on 140mg of sprycel and doing wonderfully. He had a haplo transplant in April with his sister that unfortunately didn't take. So he is just getting frequent follow ups for now and praying every day the sprycel keeps things in check long term. Best of luck to you guys, hang in there.

[WiscoTex]

Hi there,

My dad is in blast crisis CML. They started him on 140mg of Sprycel but he has been on and off of it since diagnosis due to low neutrophils. They switched him to 100mg and he is still at 0.1 k/uL. Did your husband experience anything similar on Sprycel? How did they treat it? Dad's doctors have basically been taking him off as soon as it drops that low or even 0.2. We aren't sure if this normal or just part of it.

I look forward to your reply. Thank you!

[Bb1823]

Hello, my husband didn't experience low neutrophils, his counts are actually all pretty good. He is only 35, and otherwise extremely healthy. I not sure if this plays into it, but overall he has been handling the 140 just fine.

[Bb1823]

Wisco and Kresendis, I wanted to check in to see how your dad and husband are doing? Have either been to transplant?

[snowbear]

Hi there.  I used to live in Perry, MI - about half hour outside of Lansing (where I worked).  UofM is the best and I believe they have a CML specialist there.  It's where I would want to go if I ever had to go the BMT route and my Hema/Onc is a former transplant doc herself.

 

Good luck!  I hope all goes well

[CMLParent]

I'm going to share our story in hopes that someone has advice or info or anything to help us! My husband went to the ER on 12/29 with severe abdominal pain. They told him his spleen and liver are enlarged. After running a blood test, his WBC were at 117,000. First they said they thought it was ALL, however now they're saying it's CML ph+ in blast crisis. He has been given 2 doses of Vincristine along with steroids and Sprycel. His wbc is now normal and platelets are a little low. He will be getting 2 more doses of vincristine before leaving the hospital. I'm very nervous and would really love to hear stories of others in this same situation or somewhat similar. They're talking about sct, but we aren't sure. After his last dose of vincristine they'll be doing another bmb to determine the counts. They've also mentioned that blasts are no longer in the blood. Please, let me know anything you can tell me! Thank you!

Hi Kresendis,

My son was diagnosed with PH+ ALL which we later determined was CML in Lymphoid blast crisis. Determining the difference is fairly difficult. A few questions

1)what was your husbands MRD by flow for the lymphoid blasts at the end of induction

2)What was the FISH/PCR results for the BCR ABL at the end of induction

3) Were the lymphoblasts CD 19+

For us determining the difference was very important because PH+ ALL has a drug therapy option in pediatrics and CML BC does not. In adults however I believe both roads lead to transplant. One thing you can do if he still has enough disease to be fish positive is have the lab separate the lineages of the cells and FISH them separately. If you can find the BCR ABL signal in the myeloid lineage (typically neutrophils) you can confirm the CML diagnosis. Confirming this diagnosis will be useful to you post transplant because seeing disease post transplant in CML after transplant is very common where as seeing disease for PH+ ALL would warrant a more aggressive intervention.

The playbook for diagnosis in CML in Lymphoid blast crisis is to treat just like PH+ ALL then move to transplant at the earliest opportunity. So your husband should be getting a high risk ALL chemotherapy backbone coupled with a TKI. I like their choice of sprycel as it will hopefully get you a deeper remission before transplant.

[Trey]

Here is a new article about kids with CML who have BMT and then take TKIs:

https://www.cml-foun...d-pediatric-cml

[CMLParent]

Thank you for Posting Trey. I suppose you could say Michael is patient number 6 in this cohort. This is the reason we took him to Boston and also the reason we chose the Doctor we did. Of all the centers Boston had the most experience which was 5 in the last 10 years. Shows how rare this is with children. Through Facebook we only know 5 other children with CML BC and they are all around the world. Yesterday we got his line out. He will be able to swim and wrestle with his brother. We were happy to see it go. That is until his next PCR and I will wish we had it back. He hates "pokes". Thank you for thinking of us.