Who has done a "mini -transplant" and can help me??!

[Sylvia]

Hello everyone,

I am Sylvia from and I am writing to you from Germany.

I am very glad to have found this very active forum and I am sure that you all will help me!

My Dad has been diagnosed with MDS in Dec 04. The doctors said that we should just “wait and see”.

In October 05 all his blood counts were falling and a bone marrow biopsy has shown that he already developed a secondary AML. Also a defect of chromosome 7q- was detected. The doctor strongly advised us to start a chemotherapy. My Dad had the so called TAD-protocol done for four weeks. After the first round of chemotherapy the bone marrow biopsy was free of blasts and we have been very happy.
In January 06 we started the second round of chemotherapy (HAM-protocol)for three weeks.
Also after this the biopsy showed a full remission. Also the defect of 7q- was not detectable any more. At the end of this chemotherapy they collected stem cells from my Dad.
In March/April 2006 we had the last chemotherapy done. It has been a high-dose one with Busulfan and Cyclophosphamid. An autologous transplantation followed.

My Dad is 68 years old now, but he is very sportive and fit.The doctors say that his “biological age” is around 60. He managed the three therapies very well though he already has a stent (for his heart).
After the three therapies we were supposed to wait 100 days until another biopsy has been done last week.
We were very shocked that there are again 30 % blasts in the bone marrow, meaning that the AML recurred after only three months!!

Now we are supposed to do another chemotherapy to get into remission once again. After this my Dad is supposed to do an allogenic “mini-transplantation”.

As I know this is very dangerous.
My question is, if there is somebody out there who has done it at an older age and how you managed to come to this decision. I talked to three doctors now and they all say the same: An allogenic transplantation is the ONLY way of healing this disease. We are now thinking that we should use this chance instead of waiting a few weeks until my Dad eventually slowly dies from an infection etc.
He gets platelets transfused now and the neutrophile white cells are at 0,81. HGB is at 9,4.

I still cannot really believe that my Dad should be that ill. He is working in the garden and I am anxious of sending him to the hospital and having made a transplantation where he could die. In my heart there are many doubts if this decision is right though my Dad already accepted that this seems to be the only way out.

Can anyone give me information about a mini-transplantation (maybe a successfull one) and how you decided to go this way?? Is there somebody who has survived this disease without an allogenic transplantation?

I hope you can understand my English and an I hope I have not been too confused.

I do thank you so much and I do send my very best greetings and wishes to all of you!!!!

Sylvia

[pierre]

Hallo Sylvia,

Schoen, dass Du dieses Forum gefunden hast, wenn auch unter schlechten Umstaenden.

My mother (69 y.o.) just finished a mini-allo for MDS/AML. She was released from the hospital on Monday, only three weeks post-transplant, because her counts had already gone back up more or less to normal. Even though it is far from over, I can honestly say that the whole process so far has turned out far better than we had dared to hope. Her main issues have been (and still are) nausea and vomitting, but that’s something she was already familiar with from her induction chemotherapy. We have preliminary results from a biopsy done a couple of days ago, which indicate that there are no signs of leukemia, but this needs to be confirmed with a cytogenetic exam tomorrow. At the moment we are anxiously expecting the first signs of GVHD (graft-versus-host disease), and hope that if it comes, it will be as short and painless as possible.

The real problem with transplants is that they are completely unpredictable. The three factors that we know for sure helped my mother have been 1) that she was in complete remission at the time of transplant, 2) that she had a compatible (8/8) donor in her brother, and 3), perhaps most important, that she’s in very good health for her age (which seems to be true of your father as well). Even then, though, you need to remain aware that anything can happen.

As you know, though, the good thing about both your father’s and my mother’s case is that there is not much reason to hesitate when it comes to treatment. MDS that has progressed to AML pretty much demands an allogeneic transplant, if one is possible. If you do a search on this forum (click on the “search” link at the top of this page) for my posts, you’ll see how I’ve come to this point from the moment of diagnosis back in January of this year.

You may also wish to check out the discussion boards at the Leukemia & Lymphoma Society (http://www.leukemia-lymphoma.org/hm_lls). There are very helpful people on the AML and Transplant boards.

Best of luck to you and your father, and please don’t hesitate to ask any questions you may have. I’ll do my best to answer.

Pierre

[Sylvia]

Bonsoir Pierre,
I would like to thank you so very,very much for your answer!!!
It has been so wonderful to hear that your Mom did all that so well and that the latest biopsy did not show any blasts. Einfach nur SCHÖN!!

You have been absolutely right that the time of hesitating and waiting is definitely over when MDS becomes AML and this helped me a lot!!

Yesterday we saw the Professor who will decide weather my Dad is “worth” being transplanted at the age of 68. Though he said that there is a high risk – especially considering the heart-disease – we would not give up and tell him that we really DO WANT to do it! Though he did not give us a 100% confirmation he did initiate the search for a donor!! That made us feel very good afterwards!!

During next week we will get the results and then we also will know how chances are to get a donor and how long it will approximately take to start with it all. After this we will decide what therapy will be useful to bridge the time till transplantation could start. The Professor does not want my Dad to do a more or less high-dose chemotherapy, which will take about four weeks when it is easy to see that the finding of a donor will be very complicated and will take about three months. By then my Dad might relapse again.

By now we are that far that we really WANT to do the transplantation.
If one is realistic (which sometimes is more than hard when it comes to the ones you really love from the bottom of your heart)- this is our ONLY chance!!

Pierre, I would like to thank you again so very much and I instantly hope that your Mom’s cytogenetic exam will show only best results!!!
She has been a very courageous woman and I do admire her for what she has gone through!!

Yes I would love to keep in touch with you and I will read all your former postings in this forum.

All the very best from Germany sends

Sylvia

P.S. Respekt Pierre, I am a little bit curious how you managed to write such a perfect German?? I thought you are Francais??!!

[Engel]

Dear Sylvia,
I am also from Germany but have lived in the US since age 10, I am know 65 and go back regularly.
My husband Kornel from Kassel was DX in Jan. 06 with MDS he is 69 as of April, in May he advanced to AML and received chemo which put him in remission. He is now on Vidaza as a consolidary treatment for the next months or as lond as it keeps him in remission, he gets it 7 days on and 21 days off. His counts fall some and he is tired other than that he is doing fine. If your Dad wants to speak with my husband or if you would like to speak with me we can get in touch, we both speak German. Our phone is 299-543-8676 and we usually home. Gloria

[Engel]

Dear Sylvia,
Made a mistake our area code is 239-543 8676.
What part of Germany are you from and where does your Dad go for his treatments. Blessings, Gloria

[DonUK]

Watch out for CMV. Very important!

[sarah]

What is CMV?

[pierre]

Hi Sylvia,

I certainly hope the donor search will take much less than 3 months. I’m not entirely sure about this, since we didn’t have a need for an unrelated donor, but I seem to remember being told by a transplant doctor that the search can go much faster for those who come from a homogenous ethnic background.

The chemo my mother did was difficult, but not as “high dose” as the classic treatment of idarubicin/daunorubicin. It doesn’t work for everyone, but it did work for her, without any apparent permanent damage to her organs (which is one more thing you need to worry about when you’re fighting cancer with chemo). I know that arsenic clinical trials are coming to Europe next year. I’m sure your doctor will tell you about the different options.

Please let us know how things go.

Oh, and though I did grow up in France, I studied German in school and a bit at university 🙂

Sarah–CMV is cytomegalovirus…a pretty common and benign virus in a normal immune systems, but a dangerous one to have when your immune system is compromised (e.g. after a transplant).

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