The Myeloma Beacon

Independent, up-to-date news and information for the multiple myeloma community.
Home page Deutsche Artikel Artículos Españoles

Forums

Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Deletion 17p and stem cell transplants

by BehaviorQueen on Sat Apr 18, 2015 3:59 pm

Greetings,

My husband was diagnosed on January 5th with a high risk variant of multiple myeloma. He has the 17p deletion. He was put on Revlimid, Velcade, and dex (RVD) and monthly Zometa (zoledronic acid) infusions and his numbers have been moving in the right direction.

The myeloma expert that we are seeing has a clinical trial in which altered T-cells are har­vested while my husband still has enough disease to be detectable (as a result, he's been off the RVD treatment for about a month) and are then given back to the patient either at the time of the stem cell transplant or at the time of relapse. His T-cells will be harvested at the end of April.

I had read some of the debates about whether a stem cell transplant is necessary or, given some of the newer drugs, that perhaps chemotherapy only might be sufficient. I presented those data to our treating myeloma expert, and he said that, with the 17p deletion variant of the disease, that it was "a no brainer" to do an autologous stem cell transplant.

We have not yet sought second opinions, but probably will

Here're my questions:

  • If you have the 17p deletion, is having an autologous stem cell transplant a "no brainer"?
  • Is it possible to get 2nd opinions without traveling to receive them? That is, can you get a thorough second opinion via Skype, sending records, telephone, etc?
  • If you were to obtain a 2nd opinion, who is particularly expert in the high risk variant of multiple myeloma?
Thank you.

BehaviorQueen

Re: Deletion 17p and stem cell transplants

by TerryH on Sat Apr 18, 2015 4:39 pm

Hello BehaviorQueen,

Stem cell transplants are generally a subject of debate here in the forum and among myeloma specialists more broadly. Not surprisingly, and as it seems you've already noticed, the subject comes up often here in the forum, and results in a lot of discussion.

Also not surprisingly, there have been several recent discussions here in the forum specifically about early or delayed transplants for patients, like your husband, with higher-risk disease. Here are several recent discussions I found after a quick search:

"SCT timing for intermediate / higher-risk myeloma?" (started Mar 17, 2015)

"Husband with 17p deletion" (started Sep 23, 2014)

"SCT with 13 deletion & 17 translocation - good idea?" (started Sep 8, 2014)


Many of the postings in those discussions will point you to articles that you may find useful, as well as raising points in general that you will want to think about.

Just out of curiosity, what trial is it that is being recommended to your husband (the one with altered T cells)?

TerryH

Re: Deletion 17p and stem cell transplants

by BehaviorQueen on Sat Apr 18, 2015 6:03 pm

Thank you so much to the links to the discussions. I have already read most of them and followed the articles they pointed to. I was just curious if there was any consensus that has evolved.

The resources on this forum are just terrific!

BehaviorQueen

Re: Deletion 17p and stem cell transplants

by Dr. Peter Voorhees on Sun Apr 19, 2015 4:07 pm

Dear BehaviorQueen,

Decisions regarding transplant are complicated. At the present time, high-dose melphalan chemotherapy given as part of an autologous stem cell transplant, either immediately after initial induction therapy or later in the course of the disease, uniformly leads to more durable remissions, as well as improved survival in most studies, compared with continued chemo­therapy alone. As such, most of us recommend that patients eligible for this approach should pursue it.

There is only 1 published, randomized study whose purpose was to compare early versus late transplant in multiple myeloma head to head (see reference below). In that (older) study, patients assigned to the delayed transplant arm underwent transplant at the time of first relapse (after receiving a course of chemotherapy first). In this study, there was no difference in overall survival, but the duration of remission after transplant was longer when done as part of initial therapy. As such, I typically recommend that transplant be performed either after a response to initial induction therapy (in first remission) or after a response to therapy at the time of first relapse (second remission). Transplant performed after extensive prior therapy when all else has stopped working often does not go well (less effective and harder to get through).

Currently, there are no data that would indicate that high-risk patients should not undergo trans­plant. While the duration of benefit may not be as long as it is in patients with average risk disease, that does not mean that continued chemotherapy alone is superior or equivalent to a strategy incorporating transplant.

Many advocate that, outside of a clinical study, higher risk patients should undergo transplant in first remission as opposed to a second remission out of concern that the transplant oppor­tunity may be lost if the patient is very sick at relapse and is no longer healthy enough to go through the process or if the disease cannot be treated back into remission due to the emer­gence of increasing resistance.

With regards to the former concern, with close monitoring of the myeloma, relapse typically can be caught before the patient is sick.

Concerning the latter issue, we have a lot of tools in the tool box these days to re-establish control of the myeloma, even in situations where the disease has become more resistant.

It is important that the patient, their loved ones and the myeloma specialist carefully review these issues when making this decision. Again, outside of a clinical study, many of us would suggest that the transplant be considered in first remission (and certainly no later than the second).

As mentioned in other threads, there are 2 on-going, randomized studies that will further clarify the role of transplant in the more modern era of multiple myeloma therapy. These studies are evaluating early versus delayed transplant in the context of modern myeloma treatment algo­rithms. These studies will help us determine:

  1. If transplant (high-dose melphalan) should be pursued for myeloma patients as a whole; and
  2. If there are subsets of patients that benefit from a transplant approach and other subsets that do not.
Anyhow, I hope I have not muddied the waters too much.

Good luck with your decision and best wishes to a successful course of treatment, regardless of which pathway is pursued!

Pete V.

Reference:

JP Fermand et al, "High-dose therapy and autologous peripheral blood stem cell trans­plan­ta­tion in multiple myeloma: up-front or rescue treatment? Results of a multicenter sequential randomized clinical trial," Blood, Nov 1998 (link to full text of article)

Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor

Re: Deletion 17p and stem cell transplants

by BehaviorQueen on Sun Apr 19, 2015 11:24 pm

Dear Dr. Voorhees,

I want to thank you for taking the time to respond to my query in such a thoughtful way. It is much appreciated. This is such a very complicated disease with so many variants, that even though I can try my best to read and educate myself, the learning curve is quite steep, and "a little knowledge can be a dangerous thing."

I am very interested in understanding more about the 17p deletion and exactly what is known about how that variant affects the cells and ultimately the disease.

You haven't muddied the water at all. I am most grateful for your thoughts and input.

BQ

BehaviorQueen

Re: Deletion 17p and stem cell transplants

by LarryD on Tue Apr 21, 2015 1:22 am

Dear BehaviorQueen,

My wife was diagnosed in September 2012 and also has del(17p). She underwent an autoSCT in February 2013 and has been fairly stable since then (but not in CR) on continuing RVd.

I think Dr Voohrees did an excellent job of addressing your question about whether an auto SCT is "a no brainer".

Regarding whether a second opinion can be obtained from a distant expert by electronic communication, without traveling, I too would like to hear from anyone who has arranged such a thing, and to learn which institutions and/or doctors are willing to work that way. My wife has gotten a second opinion at Mayo Clinic in Arizona, but that did require travel since we live in southern California.

Best wishes,
Larry

LarryD
Name: Larry D'Addario
Who do you know with myeloma?: wife
When were you/they diagnosed?: September 2012
Age at diagnosis: 65

Re: Deletion 17p and stem cell transplants

by Abodek on Thu Jul 23, 2015 6:14 pm

My father had the 17p deletion. We just got the news that a year after his stem cell transplant, his 17p is completely gone!! It is rare, but it happens.

Abodek

Re: Deletion 17p and stem cell transplants

by BehaviorQueen on Sat Jul 25, 2015 5:45 pm

We have now done about 6 months of chemo (RVD) and the M-spike is still 0.7 g/dL. We may do one or more rounds of CyBorD (cyclophosphamide, Velcade, and dex) before having an ASCT, but the ASCT will be done soon, I think. My husband had an adverse reaction to the Revlimid (a bright red rash over much of his torso ... getting close to Stevens-Johnson syndrome), which was knocked back with antihistamines and prednisone, so he was taken off the Revlimid, and during the most recent cycle he had only the Velcade and dexamethasone, and unfortunately, the M-spike wasn't reduced at all.

We are fortunate to be in a clinical trial which uses activated MILS (marrow infiltrating lymphocytes) in addition to the harvested stem cells. My understanding is that with 17p deletion, the problem is staying in remission, and our hope is that he will get a longer remission out of the ASCT as a result. He will be on a low dose of Revlimid after the ASCT, assuming he can tolerate it, for maintenance.

I've learned a lot on the last 6-months and am grateful for the Myeloma Beacon and also the experts we have consulted with. This is such a very complicated disease, the learning curve is very steep.

BQ

BehaviorQueen

Re: Deletion 17p and stem cell transplants

by Cheryl G on Tue Jul 28, 2015 4:59 pm

Thank you for the update about your husband, BehaviorQueen. I'm sorry to hear about the bad rash he got from the Revlimid. I hope that your husband's M-spike goes down a bit more before his transplant, and that he's able reach complete remission after the transplant and maintenance therapy.

I haven't heard about the marrow infiltrating lymphocyte (MIL) therapy before. Is this the trial that your husband might take part in:

https://clinicaltrials.gov/ct2/show/NCT01858558

In case you haven't see it, here's a press release about MIL therapy that explains it:

http://www.hopkinsmedicine.org/news/media/releases/pilot_clinical_trial_finds_injected_immune_cells_safe_in_multiple_myeloma_patients

It includes a link to the journal article where research results from an initial trial of the therapy were published.

Good luck!

Cheryl G

Re: Deletion 17p and stem cell transplants

by Ginny on Tue Jul 28, 2015 10:28 pm

Hello,

In response to the question about whether one can get a second opinion without traveling ... that is complicated by the fact that doctors are licensed by their state(s) and cannot practice out of their licensing area.

However, I have heard that the some treatment centers are setting up econsultations. A consortium of medical facilities in Boston, which includes Dana Farber and Mass General, can provide second opinions at a distance.

Your own doctor has to both request the second opinion and receive the results in order to interpret them for you. Insurance does not cover it, so it can run several hundred dollars out of pocket. On the other hand, it probably would be money well spent for future peace of mind.

You can obtain more information at econsults.partners.org.

Best wishes,
Ginny

Ginny
Name: Ginny
Who do you know with myeloma?: self and four friends
When were you/they diagnosed?: October, 2012
Age at diagnosis: 62

Next

Return to Treatments & Side Effects