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View Full Version : brother has cml due to radiation for non hodgkins lymphoma


LINDA505
08-24-2007, 03:15 PM
My brother was dx'ed with CML secondary to radiation in Dec. He is waiting for a stem cell transplant and he was ready to go when they said that his bone marrow bx showed 46% leukemia cells. He had another round of chemo and still the BMBx did not change. He is becoming resistant to the chemo and his options are running out. They want to do a different kind of chemo for a month but he is becoming to the point where he will not be able to get anymore chemo because he is at the top of what is allowed. The oncologist said that he was ready for the transplant and the transplant team say no is can not have it. I do not understand why they are at different opinions on this. I am so confused and feel that my brothers options are running out. He has already battled with Non hodgkins Lymphoma and because of the radiation given to cure him he has this fatal disease. Has anyone out there had a similar experience and had a good outcome. My brother is only 47. I do not know how he has endured all this . He has to have platelet transfusions and red and white cells almost every other day. He developed antibodies from so many transfusions. His bone marrow is in failure. What
else can go wrong. He should be 3 weeks into the transplant and now it looks like he may never get that chance. If anyone out there has gone through this please let me know.

waiting for some answers. thanks

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houtex54
08-24-2007, 09:39 PM
I'm very sorry to hear about your brother's situation.

The doctors' apparent disagreement about the BMT may depend on a number of things. For example, if the donor is not a close match, and the white cell count is low and the antibodies are elevated due to transfusions, maybe it could increase the chance of rejection. I have not read much about BMT, but I believe that doctors (ideally) want the patient in remission and otherwise healthy before doing a transplant to increase the chance of success (and reduce the chance of secondary complications).

There are some new (some FDA approved, some not) CML drugs available. The new drugs have fewer side effects and are more effective against drug resistant CML. These include second generation tyrosine kinase inhibitors (sprycel and nilotinib) which discourage expression of the mutated chromosome as well as an experimental Aurora-kinase inhibitor (VX-680) that attacks leukemia via an entirely different portal. VX-680 is showing good results against T315I mutation which is a late-stage and very resistant CML mutation.

There is an interesting in vitro study done at Univ of Rochester (M. Guzman and C. Jordan) that uses an extract of the feverfew plant (Parthenolide) to attack the leukemia producing stem cells themselves. No tests on humans for this as yet, but feverfew preparations are herbal remedies commonly used to treat migraine and treat arthritis.

I was diagnosed with CML (accelerated phase) about 5 weeks ago. I am taking an experimental drug (one of the second generation tyrosine kinase inhibitors) and am currently in hematologic remission. I'm older than 50, so BMT is not an option for me - either the chemo will continue to work, or it won't.

LINDA505
08-25-2007, 09:00 AM
Thank you for your response. I am sorry to hear that you are dx'ed with this disease as well. The donor is almost a perfect match 9 out of 10. He has bone marrow failure so his platelets , RBC's and WBC's are all critical. He does need to be 2% or less leukemic cells in his marrow and his onco on the last BMbx saw very few cells and said it was a go with the transplant. After
8 days more of chemo it is still the same two weeks after chemo. His onco still said he would have done the transplant. It is the transplant team that says no transplant now. They want him to have another round of chemo or to do a treatment over a 6 month period. He does not have 6 months and they know it. I am just so discouraged with the medical community and their
lack judgement in this case. They gave him a drug called bexar on this last treatment and another tranplant facility in Tampa said that they would not do a transplant on him because they used this drug. I am at a lose with all this and I guess it is in God's hands now. I pray that your doctors will do better for you in your case. I am sorry that you do not qualify for a transplant.

God bless you
Linda

 
 
 




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