My brother has multiple myeloma. He was diagnosed in April and went through his 4 rounds of chemo. I think it was called CyBorD.
His numbers were excellent throughout the process. The specialist even said that his numbers were so good that it didn't even look like he had multiple myeloma. But because they know the disease and that it will come back, they wanted to go forward with the stem cell transplant.
He entered the hospital for his stem cell transplant. They found a spot that was not there in the first X-ray (from April), and so they gave him a PET scan. The spot looks like myeloma, so they are giving him a biopsy for the spot. Plus, his bones lit up, so they are giving him a bone biopsy.
The specialist said this is only a setback.
My question is about the spot. Did the first round of chemo not get rid of the myeloma, or is the myeloma so aggressive that it grew back even though his numbers looked good?
Please forgive my lack of expertise in talking about this.
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Re: Spot found before stem cell transplant
Hi Arrowhead,
Sorry to hear about the complications that your brother is facing prior to his stem cell transplant.
Just to clarify a few things, you say that his doctors "found a spot" as a result of a PET scan, and that his bones also "lit up" on the results of the scan.
Where was the "spot" that they found? I'm assuming that it is someplace other than his bones.
Also, do you know more about which of his bones lit up during the PET scan?
Sorry to hear about the complications that your brother is facing prior to his stem cell transplant.
Just to clarify a few things, you say that his doctors "found a spot" as a result of a PET scan, and that his bones also "lit up" on the results of the scan.
Where was the "spot" that they found? I'm assuming that it is someplace other than his bones.
Also, do you know more about which of his bones lit up during the PET scan?
Re: Spot found before stem cell transplant
Thanks for replying.
From what I understand (I live 3,000 miles away), they had found a spot on his X-ray that was not there in April. It was in the lower back area. They could not determine what it was (either myeloma or pneumonia) so they gave him a PET scan ( which included sugar and radioactive liquid). They saw many hot spots (in the bones) that lit up.
They think maybe the bones lit up because of the Neupogen. But they are not sure, so they will be giving him a bone biopsy on Monday. In terms of the spot, they will give him a biopsy to see if it is myeloma.
The doctor said this does not happen often. I just don't understand why it is happening at all because his blood work numbers have been fabulous. Is this a setback? Is his myeloma that aggressive?
My brother cannot even comprehend this because he has been waiting for so long and he thought he was all set for the SCT. He left the hospital in tears.
From what I understand (I live 3,000 miles away), they had found a spot on his X-ray that was not there in April. It was in the lower back area. They could not determine what it was (either myeloma or pneumonia) so they gave him a PET scan ( which included sugar and radioactive liquid). They saw many hot spots (in the bones) that lit up.
They think maybe the bones lit up because of the Neupogen. But they are not sure, so they will be giving him a bone biopsy on Monday. In terms of the spot, they will give him a biopsy to see if it is myeloma.
The doctor said this does not happen often. I just don't understand why it is happening at all because his blood work numbers have been fabulous. Is this a setback? Is his myeloma that aggressive?
My brother cannot even comprehend this because he has been waiting for so long and he thought he was all set for the SCT. He left the hospital in tears.
Re: Spot found before stem cell transplant
My heart goes out to your brother and to you ... this is such a crazy disease.
I have no clinical background from which to respond, my only thought was that as they doctors supposed, Neupogen. I would think the biopsy will be much more telling.
Please know that I wish your brother all the best. It has to be hard to wait the whole weekend too in order to have the biopsy.
Does he have access to the Myeloma Beacon? I would presume he's under the care of a myeloma specialist?
I know, we all have questions but no answers.
Big hugs ...
I have no clinical background from which to respond, my only thought was that as they doctors supposed, Neupogen. I would think the biopsy will be much more telling.
Please know that I wish your brother all the best. It has to be hard to wait the whole weekend too in order to have the biopsy.
Does he have access to the Myeloma Beacon? I would presume he's under the care of a myeloma specialist?
I know, we all have questions but no answers.
Big hugs ...
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Spot found before stem cell transplant
Dear arrowhead,
It impossible for the doctors to answer before knowing the result of the additional tests. Does your brother feel well informed by the specialists who is in charge?
If the multiple myeloma is aggressive and attacking the bones, then maybe this would also have shown up as high calcium levels in blood tests. But this is probably also why they have chosen to do further testing.
The Alfa & Omega is that your brother is in good hands. And that he is well Informed. You are 3000 miles away, is somebody else going with him at consultations. And is he used to collect complex information and to writing down to be sure to remember?
hope that this is the case and that he/they are able to pass the information to you.
Greetings
It impossible for the doctors to answer before knowing the result of the additional tests. Does your brother feel well informed by the specialists who is in charge?
If the multiple myeloma is aggressive and attacking the bones, then maybe this would also have shown up as high calcium levels in blood tests. But this is probably also why they have chosen to do further testing.
The Alfa & Omega is that your brother is in good hands. And that he is well Informed. You are 3000 miles away, is somebody else going with him at consultations. And is he used to collect complex information and to writing down to be sure to remember?
hope that this is the case and that he/they are able to pass the information to you.
Greetings
-
Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Spot found before stem cell transplant
That is a tough situation. No one wants to hear that there are questions about the progression of disease, infection or otherwise, especially early in therapy. No matter what, there are options.
Without all the details, it is tough to comment on the case, but one can make a few assumptions. You mentioned that the concern was whether or not there are is a new lesion versus pneumonia. This suggests that the spot is a soft tissue lung lesion, not a new lytic lesion.
A new lesion can show-up ... rarely. It can mean that there was a part of your brother's disease that is not sensitive to CyBorD / VCD, which is the result of tumor heterogeneity. This can sometimes happen even in the face of decreasing paraprotein levels (decreasing M-spike, or a serological response). Importantly, PET/CT scans are not specific for multiple myeloma, meaning that anything with increased cellular activity will be positive. This includes multiple myeloma, but also other cancers, infection, and inflammation. I would recommend a biopsy as well. It will be important to find out what it is before going forward.
The "bone's lighting up" can be disease if progression is truly happening. Another possibility, as you said, and also a very likely cause in the setting of stem cell collection is the Neupogen causing large scale activity in the bone marrow.
You would have to prove to me that this lesion is (1) multiple myeloma and (2) significant before I would get overly excited about changing therapy. Furthermore, your bother probably also had a repeat bone marrow biopsy with his vital organ work-up prior to high dose melphalan - autologous stem cell transplant (HDM-ASCT) (which will help define disease status as well).
I cannot speak for your multiple myeloma specialist, but there remain multiple options in my opinion after we find out what it is.
Without all the details, it is tough to comment on the case, but one can make a few assumptions. You mentioned that the concern was whether or not there are is a new lesion versus pneumonia. This suggests that the spot is a soft tissue lung lesion, not a new lytic lesion.
A new lesion can show-up ... rarely. It can mean that there was a part of your brother's disease that is not sensitive to CyBorD / VCD, which is the result of tumor heterogeneity. This can sometimes happen even in the face of decreasing paraprotein levels (decreasing M-spike, or a serological response). Importantly, PET/CT scans are not specific for multiple myeloma, meaning that anything with increased cellular activity will be positive. This includes multiple myeloma, but also other cancers, infection, and inflammation. I would recommend a biopsy as well. It will be important to find out what it is before going forward.
The "bone's lighting up" can be disease if progression is truly happening. Another possibility, as you said, and also a very likely cause in the setting of stem cell collection is the Neupogen causing large scale activity in the bone marrow.
You would have to prove to me that this lesion is (1) multiple myeloma and (2) significant before I would get overly excited about changing therapy. Furthermore, your bother probably also had a repeat bone marrow biopsy with his vital organ work-up prior to high dose melphalan - autologous stem cell transplant (HDM-ASCT) (which will help define disease status as well).
I cannot speak for your multiple myeloma specialist, but there remain multiple options in my opinion after we find out what it is.
- Continue with HDM-ASCT (this is a line of therapy and will take care of the lesion).
- Depending on where the lesions is (again if isolated), radiate and go forward with HDM-ASCT.
- If there are concerns about progression of the disease beyond that isolated region), your brother could change therapy to VRD (Velcade, Revlimid and dex) for 4-6 cycles and still go forward with HDM-ASCT.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
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