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Did you have a BMB before your stem cell transplant?

by Melanie on Tue Aug 18, 2015 11:20 am

I have read about many have a bone marrow biopsy (BMB) done prior to undergoing a stem cell transplant. However, my husband FINALLY has a date scheduled for his transplant, and they are not going to do a bone marrow biopsy prior to the transplant. They have basically been tracking his progress via his light chains, and it leaves me a bit concerned since his light chains are not as low as they had previously wanted them to be going into transplant. My husband has been undergoing treatment for almost 14 months.



Moderators Note - We've changed the topic for this discussion to reflect the clarification Melanie gave below regarding what information she is looking for.

Melanie
Name: Melanie
Who do you know with myeloma?: husband
When were you/they diagnosed?: July 2014
Age at diagnosis: 54

Re: Did you have a BMB before your stem cell transplant?

by JimNY on Tue Aug 18, 2015 5:43 pm

Hi Melanie,

Maybe it's obvious to everyone else, but I'm not clear whether your posting is meant mainly to express frustration at your husband's situation (which I can completely understand), or to ask a question. If you do want to ask a question, can you be specific about what it is?

JimNY

Re: Did you have a BMB before your stem cell transplant?

by Melanie on Wed Aug 19, 2015 10:12 am

Jim, I think actually it is a little of both. Yes, I am very frustrated with the slow progress he has made during his treatment. However, I am concerned that it seems to me that I see a lot of people say they do a bone marrow biopsy prior to the transplant, and that does not seem to be the game plan for my husband going into transplant.

My husband has LCDD (light chain deposition disease) myeloma, so maybe that is the reason, since his disease is tracked through light chain testing. He has in fact made a great deal of progress, seeing that, when he started treatment, his lambda light chains were at 7700 and, prior to harvesting, his stem cells they were down to 1378. Since his harvest, they have drifted up to the 1900 range. He has had no chemo since May 23. He came down with a virus shortly after the harvest, so they suspended all treatment until he was well.

When we saw the doctor, he offered a clinical trial of daratumumab, Pomalyst, and dex, or transplant. Husband chose transplant. My thought was go on clinical trial to see if numbers would come down further and then go to transplant, but I was overruled.

Although my original question is: How common is it that a bone marrow biopsy is done prior to transplant, and what are the reasons one might not be done prior to transplant?

Melanie
Name: Melanie
Who do you know with myeloma?: husband
When were you/they diagnosed?: July 2014
Age at diagnosis: 54

Re: Did you have a BMB before your stem cell transplant?

by NStewart on Wed Aug 19, 2015 11:08 pm

The only bone marrow biopsy that I've had was during initial diagnosis. My oncologist, who is a specialist, follows my blood test results for my status. I had an ASCT in January 2010 with no bone marrow biopsy prior, nor any since. But, I have IgG kappa myeloma and am easily followed with blood tests.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Did you have a BMB before your stem cell transplant?

by Mike F on Thu Aug 20, 2015 10:18 am

Same as Nancy. Only bone marrow biopsy I had was right at diagnosis. The transplant was about 9 months later and the docs used the light chain and serum electrophoresis numbers to track the disease during that time (and ever since).

Mike F
Name: Mike F
Who do you know with myeloma?: Me
When were you/they diagnosed?: May 18, 2012
Age at diagnosis: 53

Re: Did you have a BMB before your stem cell transplant?

by Blackbird on Thu Aug 20, 2015 2:41 pm

I've had 3 bone marrow biopsies, although the second one was done because the first one was inconclusive. The initial tests were done at the time I was diagnosed. The last one was done by the facility that did my stem cell transplant (University of Michigan hospital). I was required to go through a battery of tests prior to my transplant, one of which was the bone marrow biopsy. All of these were ordered by the transplant doctor. Your husband may still have one done as a matter of course.

Blackbird
Name: Rick Crow
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb, 2013
Age at diagnosis: 53

Re: Did you have a BMB before your stem cell transplant?

by Christa's Mom on Fri Aug 21, 2015 10:54 am

EJ had a bone marrow biopsy after his fourth cycle of Velcade / dex to see if he was ready to proceed with the stem cell transplant. They decided he wasn't, and that he needed two more rounds of treatment. They did not do a follow-up bone marrow biopsy after the two rounds.

As I remember, they were actually more concerned about the results of the BMB than they were about his M-spike. They wanted his plasma cells under 10% (I hope I said that right). However, this was four years ago, and protocols may have changed.

Lyn

Christa's Mom
Name: Christa's Mom
Who do you know with myeloma?: Husband
When were you/they diagnosed?: September, 2010
Age at diagnosis: 53

Re: Did you have a BMB before your stem cell transplant?

by Anonymous on Fri Aug 21, 2015 3:52 pm

I've had three bone marrow biopsies since my initial diagnosis the fall of 2013. I also have lambda light chain multiple myeloma (and I'm considered high risk), and I had one bone marrow biopsy for my diagnosis, a second biopsy shortly before my stem cell transplant, and, while in "remission," I had another bone marrow biopsy 6 months following my SCT.

My multiple myeloma specialist said we will do a BMB once a year and some kind of scan (MRI rotated with a PET/CT scan) every year as well. The scan and the BMB will be rotated so that one of them is done every 6 months.

I also get all my multiple myeloma marker blood work done, plus the 24-hour urine test, every 3 months. I was told that sometimes the myeloma may stop showing up in one test but WILL show up in another test, and that is why we have a variety of tests done regularly.

Good luck with everything.

Anonymous

Re: Did you have a BMB before your stem cell transplant?

by Dano on Fri Aug 21, 2015 4:24 pm

I had a bone marrow biopsy done just prior to my autologous stem cell transplant and another BMB along with serum protein electrophoresis (SPEP) at 100 days post transplant. I have IgG kappa multiple myeloma.

Dano
Who do you know with myeloma?: Me
When were you/they diagnosed?: Jan 2014
Age at diagnosis: 65

Re: Did you have a BMB before your stem cell transplant?

by Tough Mom on Fri Aug 21, 2015 6:38 pm

It has been my experience that if I request a biopsy to check my disease status, my doctor is willing to do that. I am in complete response (CR) now for over 2 years, but requested a bone marrow biopsy this year just to make sure the clear blood tests aren't false negatives, and will do so next spring as well for the same reason. I had one when originally diagnosed, and another at day 100 post transplant to confirm my response status – stringent complete response (sCR) with negative MRD ... huge relief for a 46-year-old mother of 2.

If your husband had a bone marrow biopsy at diagnosis 14 months ago, that would provide the information about his cytogenetics, staging, and other disease characteristics. The main reason to do one now would be to check the quality of his response before the transplant. But you already know that your husband's myeloma is not in CR from his free light chain results, so what are you expecting to learn? Biopsies are painful and not risk free, especially as he is about to get high-dose chemo.

You should talk to your husband's doctor about your concerns, but my guess is that they will think It is much more important to have one done ~ day 100 to check response after the transplant.

Tough Mom
Who do you know with myeloma?: myself
When were you/they diagnosed?: January 2013
Age at diagnosis: 45

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