High number of blasts postpone transplant

[MNladyslipper]

My husband was scheduled to begin pretesting for a 2 or 3 cord transplant at the Univ. of MN next Monday. We got the results of his bmb today. It showed his blasts are now between 15 - 20%! Protocol says they have to be at 5% or below. He has been on Revlimid. We are waiting to see what they want to do next. I am guessing it will be azacitidine or decitabine. I am hopeful we can do one cycle and then another bmb and on to transplant. We are very afraid that we have missed our window of opportunity. We had specifically asked the dr.s about using the Revlimid with high risk MDS. He has major chromosome damage also. They told us they thought it was the best new drug out there! Now I am reading that we should have probably never used it, but insisted on trying one of the previously mentioned drugs first! Any experience with a similar situation? Thanks

[Birgitta-A]

Hi Bev,
You know all MDS patients are different and there are still no methods to know how a patient will respond to the drugs.

Revlimid is best for patients with 5q- (about 75 % respond) - of the other patients about 25 % respond. Patients with low red blood cells, normal white blood cells and normal platelets respond best to Revlimid but as we hardly ever know how the blood tests were when the disease started it´s difficult to know which patients that will respond.

Vidaza (azacitidine) seems to be better than Dacogen (decitabine) for most patients but many patients respond better to Dacogen. Most patients need to be treated at least 4 cycles (each cycle is 28 days) with these drugs.

Then we have the new drugs - histone deacetylase inhibitors - where Zolinza and Epival are approved for other diseases and perhaps can be given off record. MGCD0103 is still only available in clinical trials.

Hope your father will respond to the treatment his doctor choses!
Kind regards
Birgitta-A

[MNladyslipper]

We went up to Fairview yesterday to begin treatment with Ara-C and Idarubecin. It is a 28 day in patient treatment. They will do a biopsy on day 14. The marrow should be empty. They will do another on day 28. His counts should be recovering and his blasts down. I believe at that time they will begin transplant procedures.

I will be staying at the Hope Lodge. It is very nice. I am lucky to have such a nice place to stay.
Bev

[MNladyslipper]

I forgot to mention in the previous post that his treatment was postponed because of an infection. We go back next Monday.

[Alison]

Hi Bev

I don't have much info to offer you but my sympathy for what you're going through. My Mom is going through a very similar scenario with my Dad in that he is being treated for High-risk MDS on chemo for six months in hospital. My Mom has also been required to relocate with him. He has decided to go for a bone marrow transplant after the six month period is over.

You're in my thoughts.

Alison

[MNladyslipper]

We are settled in now, and my husband has had two doses of idarubecin. The last one will be tonight. He is also receiving seven continuous days of Ara C. They are treating him as Acute Leukemia. We are praying that one round of induction therapy will bring the blasts down so that we can get on to a cord blood transplant. They have two perfectly matched cords ready and waiting for him.
Bev

[Birgitta-A]

Hi Bev,
We all hope that your husbands blast cells will go down after this treatment and that the transplant will be performed with good result! He is a brave man!
Warm regards
Birgitta-A

[Alison]

Hi Bev

How is it going with your husband? My Dad is also busy with in-patient treatment. He is almost at the end of his first cycle of chemo, if all goes well he will be released to go home for 7 days next week. His blast cells were at 20% when he was admitted to hospital on the 8th July. We are waiting the results of his last bone marrow biopsy last week to see if there has been any change.

Good luck,
Alison