[JimNY]

Re: Autologous transplant for refractory / high risk myeloma

by JimNY on Thu Oct 01, 2015 8:10 pm

Thanks for clarifying how you came to make your transplant decision, Edna. It appears to have been a more involved, less clear-cut, decision than I had thought based on what I recalled of your earlier postings.

I think the transplant decision here in the U.S. is, if anything, more flexible and individualized than in many other countries, where there seem to be arbitrary, age-based cutoffs for who should and should not get a transplant. My understanding, for example, is that in most Euro­pean countries, and perhaps Canada and Australia as well, someone older than 65 (or, in some countries, 70) simply will not be considered for a transplant, regardless of their general physical health. That is definitely not the case here in the U.S.

Is it possible that more myeloma patients in the U.S. are encouraged to get a transplant than ideally should be the case, given their health? It's possible. Yet, if I'm not mistaken, the share of newly diagnosed patients who are under the age of 65, and get transplants as part of their initial therapy, is actually lower in the U.S. than in other countries. (Sorry, I don't have statistics handy to prove that; perhaps someone else here does.)

MrP - Sorry this discussion has gone somewhat far afield from your recent posting. I'll try to post separately on some of your concerns after I think about them some more.

[Lev]

Re: Autologous transplant for refractory / high risk myeloma

by Lev on Thu Oct 01, 2015 11:48 pm

Here, in Denmark, each year there are seminars at conference centers where all myeloma patients are invited. The speakers are Danish and international experts. The Danish myeloma specialists will talk about their research and so will the international researchers who are attending.

But they also have sessions on the "local" treatment regimen. Last year in October, one of the topics was treatment of patients who could not receive stem cell transplants, novel therapies, etc. It was clear that the physical strength and health problems, and not age, was the only real criteria. But of course this may lead to few 80 year old people getting ASCT compared to 50 year old's.

It is also a good addition that leading international researchers are attending and informing about their research and why most myeloma treatment is so relatively uniform around the world. It is giving a good background for understanding your own treatment.

[Edna]

Re: Autologous transplant for refractory / high risk myeloma

by Edna on Fri Oct 02, 2015 4:33 am

JimNY,

there are patients in UK over 65 years of age, when fit and healthy, who do have ASCT. How many I do not know, probably not many and some maybe out of choice.

If younger patients cannot achieve a certain level of response at induction they too may not be offered a transplant. I think it is a decision made by individual clinical teams, sometimes in conjunction with patients,not always as we are not 'consumers of healthcare who can 'shop around', but users of a national service, with ability to get a second opinion!

Mr PH- I hope your mind is put to rest after you make your decision and the treatment decision gives you a decent period of life with some quality. Edna

[MrPotatohead]

Re: Autologous transplant for refractory / high risk myeloma

by MrPotatohead on Fri Oct 02, 2015 5:40 am

JimNY - I have learned something from the postings, so please don't feel you need to apologize.

Edna - Thank you for the kind wishes. I am hopeful that once I do make a final decision, I will have some peace of mind. I expect that will come in a few months - certainly by Christmas.

[PattyB]

Re: Autologous transplant for refractory / high risk myeloma

by PattyB on Sat Feb 06, 2016 6:22 pm

Hi Mr. P

I am so sorry that I have not gotten back to you on my husband's progress following his stem cell transplant.

At Day +90 (post transplant) we went back to MD Anderson and it appears that he has had a complete response and they were unable to detect any myeloma anywhere. Also, all of his blood work was within normal ranges so no more low white count or anemia.

We are now at the sixth month mark and he is really feeling well, looking good, and trying to live a normal life. About five weeks ago he started a regimen of maintenance chemotherapy consisting of Revlimid, elotuzumab (new monoclonal antibody) and dexamethasone. As we have seen many times in the Beacon, the decision to do maintenance chemotherapy is not an easy one. As I may have mentioned earlier, my husband has a rare myeloma and his primary oncologist said it was aggressive. Hence, maintenance chemotherapy.

He is tolerating this combination fairly well. The dex sets him on edge for a couple of days and then the letdown occurs. But unlike with the Velcade, he has very little neuropathy. His actual schedule is: 8 weeks of chemo once a week; months 3-6 every other week; and finally, starting in month seven, chemo once a month. This regimen actually parallels a clinical trial at MD Anderson. He is not in the trial because he had one too many chemotherapy treatments.

We do not know how long he will be on the maintenance chemotherapy. Also, instead of going down to MD Anderson every month, we only go every three months. Again, this schedule almost feels like we have our life back.

Again, so sorry for the delay. We hope you are well.

[MrPotatohead]

Re: Autologous transplant for refractory / high risk myeloma

by MrPotatohead on Mon Feb 08, 2016 12:37 am

Hi PattyB,

I am so happy to hear the good news about your husband! It is wonderful to learn of your success, and I can't imagine how relieved and hopeful you both must feel now.

MD Anderson has a stellar reputation, and it does sound like your husband received the best possible care there, including a maintenance regimen built around one of the newest drugs for treating myeloma.

I hope and pray that the myeloma has been vanguished for good, and I wish you both many fulfilling years without the scourge that you have fought so successfully against.

Thank you so much for sharing your experience.