Hello everyone,
My name is Salma, and my father was diagnosed with multiple myeloma about a month ago.
During his investigations, an incidental thyroid nodule showed uptake at PET CT and a FNB showed microfollicular adenoma.
Whenever I ask, they say to treat myeloma first. He's now on Velcade, dexamethasone, and Endoxane (cyclophosphamide), but I know that the treatment for the adenoma is surgical. So can anyone tell me what is better, I am a bit lost.
Thank you all,
S.
Forums
10 posts
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salma - Name: salma
- Who do you know with myeloma?: father
- When were you/they diagnosed?: 2015
- Age at diagnosis: 63
Re: Microfollicular adenoma with multiple myeloma
Good day, Salma:
Welcome to the forum, and I am sorry that you and your family, particularly your father, are forced to have to deal with this. You have provided a little bit of detail, but there is certain key details that more gets to the point as to the situation, that you did not provide, so it will be a little difficult to give the best possible answers/guidance, but we can offer you a little bit of feedback.
The treatment regimen you described is called CyBorD. There is a debate at present as to whether or not it has been surpassed yet by RVD (Revlimid, Velcade, dexamethasone). CyBorD, however, should be considered as either an equal or an almost equal to RVD, so you are good in that regard. The Mayo clinic still uses CyBorD in standard risk newly diagnosed multiple myeloma (NDMM). Here is a link, it will also be informative and more helpful a briefing than I will be able to give in this post.
Here are a couple of issues/questions:
Good luck to you and your father.
Welcome to the forum, and I am sorry that you and your family, particularly your father, are forced to have to deal with this. You have provided a little bit of detail, but there is certain key details that more gets to the point as to the situation, that you did not provide, so it will be a little difficult to give the best possible answers/guidance, but we can offer you a little bit of feedback.
The treatment regimen you described is called CyBorD. There is a debate at present as to whether or not it has been surpassed yet by RVD (Revlimid, Velcade, dexamethasone). CyBorD, however, should be considered as either an equal or an almost equal to RVD, so you are good in that regard. The Mayo clinic still uses CyBorD in standard risk newly diagnosed multiple myeloma (NDMM). Here is a link, it will also be informative and more helpful a briefing than I will be able to give in this post.
Here are a couple of issues/questions:
- It might be helpful to give your country. Some of the posters are able to give guidance based on country. I am guessing that you are outside of the US (RVD is more common in the US). Europe does not approve RVD for first round treatment, probably based on the cost of the Revlimid, but it is used for second round (after first relapse).
- Did you get a FISH test? The FISH test surveys the DNA (also known as cytogenetics). Doctors and researchers do not understand the results in all respects. However, certain of the abnormalities that are found do correspond to a particular treatment option. It is standard in the US to get the FISH before the start of initial induction. The test is done along with the bone marrow biopsy.
- What was your father's M-spike and % of involvement of the bone marrow? Did he have any other CRAB symptoms? For NDMM, most (> 80%?) but not all cases are indicated by the M-spike. Response is measured by M-spike reduction. With CyBorD, you have a reasonably good chance of reaching "very good partial response" (VGPR). VGPR is a 90% reduction in M-spike. With CyBorD you have a small chance of reaching "complete response" (CR), but about a 65% chance of reaching VGPR after about 4 rounds.
- Refer back to the MSmart guidelines. Is your father transplant eligible, and is that in the cards from the point of view of your doctors?
- Is your treating physician someone who "specializes" in multiple myeloma?
Good luck to you and your father.
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JPC - Name: JPC
Re: Microfollicular adenoma with multiple myeloma
Hey JPC,
Thank you so much for your kind response.
We live in Egypt, and dad was initially presented with a fracture in the clavicle, the M-spike and the bone aspirate were borderline, the bone biopsy showed both mature and immature plasma cells, and now it's under further immunohistochemical investigations of CD28/CD138. The PET CT showed multiple bone lesions with D4 vertebral body wedge fracture. He presented with renal impairment as well, which is improving in serial labs.
The lines available in Egypt for the treatment of multiple myeloma are the one dad's taking and VAD; other lines are available, but unfortunately we don't have a thorough guidelines to follow.
His oncologist asked for further evaluation for transplantation eligibility.
Still I have a problem recognizing what shall be done and if the thyroid nodule have any methods of follow up and what will be those lines.
Thanks in advance,
S.
Thank you so much for your kind response.
We live in Egypt, and dad was initially presented with a fracture in the clavicle, the M-spike and the bone aspirate were borderline, the bone biopsy showed both mature and immature plasma cells, and now it's under further immunohistochemical investigations of CD28/CD138. The PET CT showed multiple bone lesions with D4 vertebral body wedge fracture. He presented with renal impairment as well, which is improving in serial labs.
The lines available in Egypt for the treatment of multiple myeloma are the one dad's taking and VAD; other lines are available, but unfortunately we don't have a thorough guidelines to follow.
His oncologist asked for further evaluation for transplantation eligibility.
Still I have a problem recognizing what shall be done and if the thyroid nodule have any methods of follow up and what will be those lines.
Thanks in advance,
S.
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salma - Name: salma
- Who do you know with myeloma?: father
- When were you/they diagnosed?: 2015
- Age at diagnosis: 63
Re: Microfollicular adenoma with multiple myeloma
Hello Salma:
I have personally known outstanding doctors from Egypt. Maybe there is a language issue, here, but I would want more explanation for the multiple myeloma diagnosis. If the M Spike is "borderline," that is a concern. That is rare for newly diagnosed multiple myeloma. If correct, your father does not have plain vanilla "I mean ordinary or common" multiple myeloma. Alternatively, he has light chain or nonsecretory multiple myeloma, which is a possibility. That occurs, but is relatively rare.
The thing is, if you are starting to treat multiple myeloma, then you need to know it's in fact multiple myeloma. More to the point, you said that the bone marrow biopsy was borderline. That is very rare that you would have active multiple myeloma with a borderline BMB.
Is there another condition that could cause the thyroid tumor?? Is there a myeloma specialist that you could consult with? Just to be clear, your doctor may well be 200% correct. However, some of the info that you posted is either contradictory, or very rare (from my end, understand this is a non-medical professional opinion).
Good luck.
I have personally known outstanding doctors from Egypt. Maybe there is a language issue, here, but I would want more explanation for the multiple myeloma diagnosis. If the M Spike is "borderline," that is a concern. That is rare for newly diagnosed multiple myeloma. If correct, your father does not have plain vanilla "I mean ordinary or common" multiple myeloma. Alternatively, he has light chain or nonsecretory multiple myeloma, which is a possibility. That occurs, but is relatively rare.
The thing is, if you are starting to treat multiple myeloma, then you need to know it's in fact multiple myeloma. More to the point, you said that the bone marrow biopsy was borderline. That is very rare that you would have active multiple myeloma with a borderline BMB.
Is there another condition that could cause the thyroid tumor?? Is there a myeloma specialist that you could consult with? Just to be clear, your doctor may well be 200% correct. However, some of the info that you posted is either contradictory, or very rare (from my end, understand this is a non-medical professional opinion).
Good luck.
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JPC - Name: JPC
Re: Microfollicular adenoma with multiple myeloma
Hello,
Sorry if my previous reply was a bit vague, The serum protein electrophoresis showed M band at beta gamma region, and further serum immunofixation done later showed a decreased kappa level with normal kappa / lambda ratio.
I consulted a number of oncologists and the first one said that the labs are not conclusive, that's why I said the labs were borderline.
The last doctor I consulted, a pioneer hematologist, asked for immune histochemistry to be done on a previous bone biopsy that showed mature and immature plasma cells. He agreed with the multiple myeloma diagnosis and treatment, still he wants further proof, in order to see if he's a candidate for bone marrow transplantation (by the way, thank you for the links).
They all said that it's more crucial to deal with the multiple myeloma issue before the thyroid adenoma, since it's not the cause behind the bone lesions, not metastatic, I mean.
And I read somewhere that Velcade is not given to patients with total thyroidectomy.
I don't know if the treatment will affect the adenoma or if it may turn malignant with the suppression of the transplantation. Is there a reliable way to follow it up?
is it the right decision? To start multiple myeloma treatment before the thyroid resection? I know it's a case of pros and cons so did we took the right path?
Thank you so much for your patience and support,
Salma
Sorry if my previous reply was a bit vague, The serum protein electrophoresis showed M band at beta gamma region, and further serum immunofixation done later showed a decreased kappa level with normal kappa / lambda ratio.
I consulted a number of oncologists and the first one said that the labs are not conclusive, that's why I said the labs were borderline.
The last doctor I consulted, a pioneer hematologist, asked for immune histochemistry to be done on a previous bone biopsy that showed mature and immature plasma cells. He agreed with the multiple myeloma diagnosis and treatment, still he wants further proof, in order to see if he's a candidate for bone marrow transplantation (by the way, thank you for the links).
They all said that it's more crucial to deal with the multiple myeloma issue before the thyroid adenoma, since it's not the cause behind the bone lesions, not metastatic, I mean.
And I read somewhere that Velcade is not given to patients with total thyroidectomy.
I don't know if the treatment will affect the adenoma or if it may turn malignant with the suppression of the transplantation. Is there a reliable way to follow it up?
is it the right decision? To start multiple myeloma treatment before the thyroid resection? I know it's a case of pros and cons so did we took the right path?
Thank you so much for your patience and support,
Salma
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salma - Name: salma
- Who do you know with myeloma?: father
- When were you/they diagnosed?: 2015
- Age at diagnosis: 63
Re: Microfollicular adenoma with multiple myeloma
Salma:
Without getting hyper-technical, I would simply ask / confirm with the doctors:
Good luck.
Without getting hyper-technical, I would simply ask / confirm with the doctors:
- He is IgG multiple myeloma perhaps, but you need to know the stage. With kidney involvement, and substantial bone lesions, perhaps he is Stage III IV, and they need to get the multiple myeloma under control, first?
- Are the meds he is being given also designed to slow down the progression / metastasis of the follicular adenoma? It is possible that this is part of the picture.
- He is probably a surgical risk, until the kidneys clear, multiple myeloma is under control, and clotting issues resolved?
Good luck.
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Rneb
Re: Microfollicular adenoma with multiple myeloma
Given the information you've provided, certainly the myeloma is the priority. Once the multiple myeloma is 'quiet', and typically after a few months of treatment, a decision can be made about the thyroid. I am not a thyroid specialist, but most of these lesions are benign, although any with a 'follicular' component are usually removed. Sounds like you were given this advice.
I agree with the other posters that clarity about your father's multiple myeloma, and full investigation into appropriate treatment options, is the overwhelming priority.
Hope this helps.
I agree with the other posters that clarity about your father's multiple myeloma, and full investigation into appropriate treatment options, is the overwhelming priority.
Hope this helps.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: Microfollicular adenoma with multiple myeloma
Well, thank you Rneb and Dr. Hoffman for your reply.
Hope it gets clear with the new labs and all.
Regards,
salma
Hope it gets clear with the new labs and all.
Regards,
salma
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salma - Name: salma
- Who do you know with myeloma?: father
- When were you/they diagnosed?: 2015
- Age at diagnosis: 63
Re: Microfollicular adenoma with multiple myeloma
Hello Salma
Just wanted to get back to you that say that you did not need to apologize to me at all about your post. People present medical information and tests all of the time. What one realizes is that, even within a country, there is slightly different terminology used for the same thing. Hence, it is often the case that someone who is trying to help a new patient asks for clarification. I am glad you got very good info from Dr. Hoffman, and best of luck to your father.
Just wanted to get back to you that say that you did not need to apologize to me at all about your post. People present medical information and tests all of the time. What one realizes is that, even within a country, there is slightly different terminology used for the same thing. Hence, it is often the case that someone who is trying to help a new patient asks for clarification. I am glad you got very good info from Dr. Hoffman, and best of luck to your father.
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JPC - Name: JPC
Re: Microfollicular adenoma with multiple myeloma
Hello JPC ,
Thank you for your help and kind words
I am really grateful
Best regards,
Salma
Thank you for your help and kind words
I am really gratefulBest regards,
Salma
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salma - Name: salma
- Who do you know with myeloma?: father
- When were you/they diagnosed?: 2015
- Age at diagnosis: 63
10 posts
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