MDS - What to do next

[Umaterr]

Hi, I wrote in August but I never followed up. Well I am back and I have a few new questions. My husband Dx in August (actually June with a bx in July) with MDS. He also has 17q- which is not good. We went to Dana Farber for a second opinion, discussed BMT. It was determined that he was not a good candidate for BMT because of the mm he was Dx with in 1999 where he had a stem cell transplant, TBI, etc. plus he did not want to go through it just to fail in the end. At the time of this Dx, I thought his blasts were 3% but I think it was less than 5%, I have to verify this. Anyway, my question is what should I be looking for? When is it time to do something different? Is there anything different that can be done? I have been looking for clinical trials but have not had much success, I am not sure I am researching in the correct places but I have spent much time looking to see what is out there. I just need some hope, and some help finding it.

He is currently on decitabine and has had 2 cycles. His counts are now as follows: WBC - 1.1, RBC - 2.63, Hgb - is 9.0' plats - 127. Not great but holding own. He has had 3 EPO shots which seem to be keeping him going. Should I start looking for clinical trials? I understand we may not have results until 3 or 4 cycles, but what else can I do? Any advise would be appreciated. Thank you

[Birgitta-A]

Hi Umarerr!
You seem to already know much about what it means to have blood cancer like myeloma or MDS. You understand that you have to follow the counts and blasts in the bone marrow.

As you wrote you have to wait before you know if your husband will respond to Dacogen. Good that EPO keeps him going!

I am afraid that because your husband has already been treated for cancer he can't participate in some of the clinical trials you can find at the clin trials gov site.

Hope Dacogen will have a positive effect!
Kind regards
Birgitta-A
75 yo, dx MDS Interm-1 2006 with HGB 7.0 and severe bone marrow fibrosis. Supportive treatment with txs, iron chelators and Neupogen for low WBC until 2010. Responded 3 years at Thalidomide and 1 year at Revlimid. Now tx dependent.

[Umaterr]

Birgitta-A,

Thanks for your reply, I just want to be sure that I am not missing anything. Appreciate you help.

Umaterr

[Umaterr]

My husband just completed 6 months of decitabine and he has had a biopsy which showed that his blasts were around 5% up from 3%. His onc thinks that this is good And wants him to stay off treatment for a couple of months to see if his counts come back. He has been off treatment for a couple months and his counts wbc is normal, however his platelets and RBC are low still. He has had 4 transfusions since November but is doing ok. His onc is discussing his next move with Dana Farber to make the best treatment decision. Has anyone gone through this? Not knowing where to go from here? What should be our next move?

[Neil Cuadra]

Umaterr,

Secondary MDS is hard to treat successfully, so I think it's very good news that your husband's bone marrow blasts and white blood cell count are normal, and that he's needed only an occasional transfusion. If his platelets and red blood cell count are a bit low but not dangerously low, he may be in a fairly stable state and you can afford to wait for further recommendations from his doctors. I'm also glad that his oncologist is talking to the experts at Dana Farber; I'd give a lot of weight to their recommendations.

Of course you'd rather that he be completely transfusion-free with all counts normal, so it's all relative.

I know that you've looked for clinical trials yourself, and there may be none that apply to his situation and for which he's eligible, but if you want to be more sure about that, you can ask his doctors for trials they know of, and you can also call a patient educator at the Aplastic Anemia & MDS International Foundation. They are quite friendly and knowledgable and may have ideas about your options, including clinical trials.

[Umaterr]

Neil, Thank you for your response, I appreciate your time and feel better about the results at the moment. I will certainly talk to our onc and see if he has any recommendations and I may contact the patient educator as well. Again, I appreciate your time.

Thank you,

[CherylAnnC]

I have had MDS for 3 years now. I also have PNH. Nothing was working for me and I was transfusion dependent., with iron over load. There were no matches for a bone marrow transplant and I had been taken off the list after a year long search. All three parts of my blood are effected, hemoglobin platelets and white blood cells. I went to Moffitt Cancer Center in Tampa FL for a second opinion early in my diagnosis. I probably wouldn't be here if not for their hematology department. Last July I had a chemo treatment called ATG and I have been transfusion free ever since. Trust me the 5 days in the hospital were not fun but the results are miraculous. ATG is a equine lucocyte chemo treatment by infusion. My counts go up and down but it stimulated my bone marrow to start working again. It has been almost a year now and I'm told it can last up to three years, so I am very hopeful. It doesn't work for everyone but it worked for me! If your out of options talk to your doctor about it. If your not getting the right answers look somewhere else. Moffitt is great place to start!

[Umaterr]

CherylannC,

Thank you for sharing this information, I have taken notes and will definitely do further research on it as well as the Moffitt Cancer Center. I am excited about this, it would be excellent to be transfusion free, you must be feeling great? Hopefully, this could work for us as well. Again, Thank you very much for your time and for sharing this information, who knows right? Good luck to you and I hope the treatment continues to work for you for a long, long time. Thank you..

[Hopeful]

ATG doesn't quite work as was described. It has been used successfully for a small subset of MDS patients, typically with an immune-mediated form of MDS-RA or MDS-RCMD. Having a hypo-cellular marrow or a small PNH clone can be a sign that an immune attack is going on and could make someone a candidate for this form of treatment.

ATG is like a big hammer that wipes out the t-cells that are attacking the good cells in your marrow. The marrow must rebuild itself [slowly] afterwards and typically cyclosporine is given to keep the immune response down while the rebuilding is occurring. ATG does not stimulate the marrow per se. It is sometimes given as a pre-conditioning regimen before transplant.

That being said, I don't think there is any reason to think that a response from ATG will only last 3 years. If you have enough healthy stem cells left and the ATG was able to stop the major immune attack, you marrow may be able to fend for itself (or with the help of cyclosporine) for a long period of time. I am 6+ years from ATG.

Umaterr - There is a webinar tomorrow (June 2) on BMT for MDS that you may want to check out. They usually take questions at the end. Here is the link for more information and to sign up:

https://www.pathlms.com/aamdsif

[Umaterr]

Hopeful, I know that the information for the ATG might not have been directed toward me, however, I appreciate the information and will take it under advisement. I have not had time to do the research that I want to do regarding ATG so the information you provided will be included in on the research that I do. I also want to thank you for the BMT information, but that is something that my husband does not want to go through. When he was initially DX, his onc at DF indicated that his chances of survival of a BMT was not great, so my husband did and still does not want to go down that road. He would rather do whatever he can to make the time he had left as good a quality of life as possible. We will continue to research and find the best and most successful treatment available without BMT. I do appreciate all the information that you provided and will be reviewing as much so the as I can in the next few days. Thank you again, appreciate your help with this.

[Hopeful]

Umaterr,

I completely respect your husbands preference for an alternative to BMT. I hope his condition continues to remain stable. It seems like he is in good hands

[CherylAnnC]

Hi, just wanted to add some details from my last post about my personal experience with the ATG treatment I received. Also I'm very glad to hear that it last beyond 3 years in some cases. That is more hopeful news. I had my treatment last summer and I have been off the cyclosporine since March. So my results are with no oral medication assisting in my results. My last hemoglobin count was 10.9 and platelets 100. The doctor did say that at any point if my counts start dropping dramatically I would need to go back on the cyclosporine. The ATG treatment was a last resort for me as there was no matching donors for a transplant, and we tried everything else available at the time. I also have PNH with a large clone size. I am treated biweekly with Soliris infusions to control the PNH and that is working as well without any notable side effects. In the next few months we are going to try every three week intervals for the Soliris treatment and see if my counts hold! I am sharing my experience because I know with MDS there are so many variables for each patient and their diagnosis, the more information that is shared the bigger the possibility of helping someone with their situation. Always stay hopeful! Every day is a blessing

[Umaterr]

Hi, I have another question for anyone who might have some insight. My husband met with his onc today. Two weeks ago his onc was supposed to contact DF for another opinion on my husbands next treatment, but he did not do this. I was so disappointed with his onc and this is not the first time. Anyway, he did talk to my husband about clofarabine, which apparently has been around for awhile sInce 2009. It was initially used in pediatric but according to our onc it is being trialed in 60 or older. I think he had some old information and wanted to know if anyone knew more about this. I did search this site for clofarabine and there is some information, but most is 2009 forward. Rather than read through all the old posts, not knowing if things have changed significantly, I thought I would ask about it and do my own research outside of this forum. Any knowledge anyone has would be appreciated. Thank you,