In 2013 I was diagnosed with primary amyloidosis. I reached complete remission the same year. My light chains began to rise in 2015. Now I have been told I have multiple myeloma.
My original oncologist said that, because of the rise in light chains, the disease is trying to make a comeback, so he put me on a maintenance program of 25 mg of Revlimid and Decadron (dexamethasone). After 21 days, serum kappa light chain dropped from 1176.50 to 77.28, and kappa/lambda ratio dropped from 178.80 to 5.74. I appear to have good blood test results. Nothing alarming from bone density test.
I am new to this so, after 21 days and these results, is it feasible to lower the dosage of Revlimid?
My new oncologist says I have myeloma. My previous oncologist said the disease is trying to come back. I am somewhat confused.
I have had 2 biopsies, and they showed no signs of amyloid. Thoughts please.
Forums
-
Dragon62 - Name: Robert Fuller
- Who do you know with myeloma?: Blood disorder
- When were you/they diagnosed?: 3 Jul 2015
- Age at diagnosis: 58
Re: Multiple myeloma vs. amyloidosis
Dear Dragon,
The diagnosis of primary light chain (AL) amyloidosis is dependent on a number of tests and the history and physical examination. It can be a challenging diagnosis to make with confidence.
At a minimum, patients must have a monoclonal gammopathy and a biopsy that confirms AL amyloidosis with Congo red staining showing apple-green birefringence under polarized light microscopy. The type of amyloidosis – e.g. AL, ATTR, AA or wild type – is confirmed with immunoelectrofluorescent staining, electron microscopy and/or mass spectrometry to make the diagnosis with certainty. The biopsy can be of skin, rectum, salivary gland or the involved organ such as the heart or the kidneys.
Each type of amyloidosis has different treatments and prognosis. Diagnostic certainty is mandatory. Most patients with AL amyloidosis have a low level of plasma cells in their bone marrow, only approximately seven (7) percent. Patients with AL amyloidosis do not have any of the “CRAB” features that define multiple myeloma (C = elevated blood calcium levels, R = renal (kidney) damage, A = anemia, B = bone damage).
If you have not had a biopsy that was positive for AL amyloidosis, then the diagnosis is still in question. It is very important to be certain of the diagnosis of AL amyloidosis so that you are not treated with chemotherapy unnecessarily. It is true that some patients with AL amyloidosis can progress to multiple myeloma with CRAB features, but it is not common.
Based on your story, I would question whether you actually have had AL amyloidosis. Key questions I have about your case include the following:
The diagnosis of primary light chain (AL) amyloidosis is dependent on a number of tests and the history and physical examination. It can be a challenging diagnosis to make with confidence.
At a minimum, patients must have a monoclonal gammopathy and a biopsy that confirms AL amyloidosis with Congo red staining showing apple-green birefringence under polarized light microscopy. The type of amyloidosis – e.g. AL, ATTR, AA or wild type – is confirmed with immunoelectrofluorescent staining, electron microscopy and/or mass spectrometry to make the diagnosis with certainty. The biopsy can be of skin, rectum, salivary gland or the involved organ such as the heart or the kidneys.
Each type of amyloidosis has different treatments and prognosis. Diagnostic certainty is mandatory. Most patients with AL amyloidosis have a low level of plasma cells in their bone marrow, only approximately seven (7) percent. Patients with AL amyloidosis do not have any of the “CRAB” features that define multiple myeloma (C = elevated blood calcium levels, R = renal (kidney) damage, A = anemia, B = bone damage).
If you have not had a biopsy that was positive for AL amyloidosis, then the diagnosis is still in question. It is very important to be certain of the diagnosis of AL amyloidosis so that you are not treated with chemotherapy unnecessarily. It is true that some patients with AL amyloidosis can progress to multiple myeloma with CRAB features, but it is not common.
Based on your story, I would question whether you actually have had AL amyloidosis. Key questions I have about your case include the following:
- What was the percent of abnormal plasma cells in your bone marrow when you were diagnosed with amyloidosis?
- What was the reason that you were diagnosed with AL amyloidosis? What organs (kidney, liver, heart, gastrointestinal, neurologic etc) were affected by the amyloidosis?
- What has changed that now means you have multiple myeloma?
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Multiple myeloma vs. amyloidosis
Thanks Dr. Libby.
This is where I am totally confused. I know that some doctors say amyloidosis and some say myeloma. I was told that the amyloid attacked my kidneys, for one. I had complete renal failure along with internal bleeding. I had a bone density a week ago, no findings. I am scheduled for an osseous survey this Wednesday.
I have a new oncologists who says myeloma. My old oncologist said because of the light chains rising, we are going to put you on Revlimid maintenance along with Decadron. I am not a doctor, if the light change dropped from 1178 to 77 after 21 days, why not lower the dosage? To tell you the truth, the only thing I can see that has changed was the rise in light chains.
I have no idea how the new oncologist came to this conclusion. I do recall Dr. Vincent Rajkumar from the Mayo Clinic was consulted at initial diagnosis of amyloidosis.
What happens if nothing shows up on the osseous survey?
This is where I am totally confused. I know that some doctors say amyloidosis and some say myeloma. I was told that the amyloid attacked my kidneys, for one. I had complete renal failure along with internal bleeding. I had a bone density a week ago, no findings. I am scheduled for an osseous survey this Wednesday.
I have a new oncologists who says myeloma. My old oncologist said because of the light chains rising, we are going to put you on Revlimid maintenance along with Decadron. I am not a doctor, if the light change dropped from 1178 to 77 after 21 days, why not lower the dosage? To tell you the truth, the only thing I can see that has changed was the rise in light chains.
I have no idea how the new oncologist came to this conclusion. I do recall Dr. Vincent Rajkumar from the Mayo Clinic was consulted at initial diagnosis of amyloidosis.
What happens if nothing shows up on the osseous survey?
-
Dragon62 - Name: Robert Fuller
- Who do you know with myeloma?: Blood disorder
- When were you/they diagnosed?: 3 Jul 2015
- Age at diagnosis: 58
Re: Multiple myeloma vs. amyloidosis
Hi Dragon,
In regard to what seems to be your biggest question – Why not decrease the Revlimid dose? – most of the time, hematology / oncology doctors will treat a newly diagnosed patient or a newly relapsed patient with myeloma or AL amyloidosis for 6-12 months at a minimum. It takes that long to really reduce the amount of myeloma cells in the bone marrow to levels that will stay down for months or years. This is true even if the blood numbers are better. The blood numbers are only a fair representation of what is going on in the bone marrow.
In some ways it may not matter whether your diagnosis is AL amyloidosis, multiple myeloma, or both. However, for some patients, the distinction can be very important to know and can make an enormous difference.
If your osseous survey is negative, you could still have multiple myeloma and / or AL amyloidosis.
Without all of your medical information, it is not possible to sort this out perfectly for you, although I wish that I could. I know this is probably quite frustrating and that is why seeing an expert could be very useful for you. You perhaps should consider seeing a hematologist / oncologist who is expert in myeloma and amyloidosis. Dr. Rajkumar is a superb physician whom I admire greatly, but even he needs to have all of the information to give a comprehensive expert opinion. This cannot be accomplished with a phone call.
Would you share your location with us? I could then give you the names of some medical centers that you might consider getting a second opinion from.
I hope we can help you to sort out these challenging questions.
In regard to what seems to be your biggest question – Why not decrease the Revlimid dose? – most of the time, hematology / oncology doctors will treat a newly diagnosed patient or a newly relapsed patient with myeloma or AL amyloidosis for 6-12 months at a minimum. It takes that long to really reduce the amount of myeloma cells in the bone marrow to levels that will stay down for months or years. This is true even if the blood numbers are better. The blood numbers are only a fair representation of what is going on in the bone marrow.
In some ways it may not matter whether your diagnosis is AL amyloidosis, multiple myeloma, or both. However, for some patients, the distinction can be very important to know and can make an enormous difference.
If your osseous survey is negative, you could still have multiple myeloma and / or AL amyloidosis.
Without all of your medical information, it is not possible to sort this out perfectly for you, although I wish that I could. I know this is probably quite frustrating and that is why seeing an expert could be very useful for you. You perhaps should consider seeing a hematologist / oncologist who is expert in myeloma and amyloidosis. Dr. Rajkumar is a superb physician whom I admire greatly, but even he needs to have all of the information to give a comprehensive expert opinion. This cannot be accomplished with a phone call.
Would you share your location with us? I could then give you the names of some medical centers that you might consider getting a second opinion from.
I hope we can help you to sort out these challenging questions.
Last edited by Dr. Edward Libby on Mon Aug 03, 2015 10:57 pm, edited 2 times in total.
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Multiple myeloma vs. amyloidosis
Thanks again, Dr. Libby.
I am in San Antonio Texas. If you can find me an expert, that would be great. This is confusing to me. Everything negative and I could still have myeloma. What might be a determining factor in having neither? I have all of my medical records from initial hospitalization from 2013.
I am in San Antonio Texas. If you can find me an expert, that would be great. This is confusing to me. Everything negative and I could still have myeloma. What might be a determining factor in having neither? I have all of my medical records from initial hospitalization from 2013.
-
Dragon62 - Name: Robert Fuller
- Who do you know with myeloma?: Blood disorder
- When were you/they diagnosed?: 3 Jul 2015
- Age at diagnosis: 58
Re: Multiple myeloma vs. amyloidosis
Hi again Dragon 62,
I cannot find anyone who specializes in amyloidosis in San Antonio (although there may well be someone). However there are physicians who specialize in amyloidosis at the M.D. Anderson Cancer Center in Houston and at the Simmons Cancer Center at UT Southwestern in Dallas.
I think it would be well worth your time to get a second opinion regarding your condition and further explanation of the appropriate treatment and prognosis.
I cannot find anyone who specializes in amyloidosis in San Antonio (although there may well be someone). However there are physicians who specialize in amyloidosis at the M.D. Anderson Cancer Center in Houston and at the Simmons Cancer Center at UT Southwestern in Dallas.
I think it would be well worth your time to get a second opinion regarding your condition and further explanation of the appropriate treatment and prognosis.
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Multiple myeloma vs. amyloidosis
About ten years ago I was diagnosed with atrial fibrillation. Two years prior, I was diagnosed with MGUS. Five years before that, I had surgery for Dupuytrens contracture, right hand. My left hand is now symptomatic, and will need surgery. Two years ago, my oncologist found a lump in my chest which was determined to be lipoma, (no biopsy). He then found nodes on thyroid. Biopsied, I was told "they bear watching". My PCP now says I have stage three kidney disease, because of intermittent low GFR.
Upon reading this thread, I looked up amyloidosis, and "atrial fibrillation" came up. Am I reading too much? Should my doctors be talking to each other?
I apologise for the intrusion.
will
Upon reading this thread, I looked up amyloidosis, and "atrial fibrillation" came up. Am I reading too much? Should my doctors be talking to each other?
I apologise for the intrusion.
will
Re: Multiple myeloma vs. amyloidosis
Hello Will,
It would be valuable for you to see a hematologist / oncologist to sort this out. Patients with light chain (AL) amyloidosis can develop atrial fibrillation and kidney disease from complications of AL amyloidosis. Dupuytren's contractures are not caused by amyloidosis. The thyroid nodes are almost certainly unrelated to amyloidosis.
The vast majority of patients with MGUS will never develop AL amyloidosis, but some do. It will take a physician experienced in amyloidosis to answer this question. Testing that might be indicated include an echocardiogram of the heart, EKG, 24-hour urine collection for protein and Bence Jones proteins, serum protein electrophoresis (SPEP), serum free light chains, liver function tests, biopsy of abdominal fat, rectum, salivary glands of the lip or the kidney or heart.
I should caution that amyloidosis is a rare disease and therefore the chances of you having it are very small. Your question is a good one however. Thank you for sharing it with the Beacon.
It would be valuable for you to see a hematologist / oncologist to sort this out. Patients with light chain (AL) amyloidosis can develop atrial fibrillation and kidney disease from complications of AL amyloidosis. Dupuytren's contractures are not caused by amyloidosis. The thyroid nodes are almost certainly unrelated to amyloidosis.
The vast majority of patients with MGUS will never develop AL amyloidosis, but some do. It will take a physician experienced in amyloidosis to answer this question. Testing that might be indicated include an echocardiogram of the heart, EKG, 24-hour urine collection for protein and Bence Jones proteins, serum protein electrophoresis (SPEP), serum free light chains, liver function tests, biopsy of abdominal fat, rectum, salivary glands of the lip or the kidney or heart.
I should caution that amyloidosis is a rare disease and therefore the chances of you having it are very small. Your question is a good one however. Thank you for sharing it with the Beacon.
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Multiple myeloma vs. amyloidosis
I was diagnosed with amyloidosis after renal failure and a kidney biopsy. Then a bone marrow biopsy (BMB) showed myeloma. No bone involvement, but the amyloid was or is in my heart. Started on dex and Velcade, then only Velcade for past 3 years. That combination has worked effectively on both. Dex December 2011. Doing great. Was also evaluated at Mayo and they kept me on Velcade for maintenance. Also have 4:14 translocation, so I feel very blessed.
-
JLB
Re: Multiple myeloma vs. amyloidosis
JLB,
I had complete renal failure at the time 2013. No amyloid showed upon. I had a second biopsy back in February this year; no amyloid found. I did Velcade but had to stop due to extreme peripheral neuropathy. I did reach CR though after round 3.
This myeloma diagnosis, which I think is still a question in my mind, has me somewhat confused. I have asked my current oncologist to consult with the Mayo Clinic as they were a part of diagnosing me with amyloid. All my blood tests seem to be normal.
I had complete renal failure at the time 2013. No amyloid showed upon. I had a second biopsy back in February this year; no amyloid found. I did Velcade but had to stop due to extreme peripheral neuropathy. I did reach CR though after round 3.
This myeloma diagnosis, which I think is still a question in my mind, has me somewhat confused. I have asked my current oncologist to consult with the Mayo Clinic as they were a part of diagnosing me with amyloid. All my blood tests seem to be normal.
-
Dragon62 - Name: Robert Fuller
- Who do you know with myeloma?: Blood disorder
- When were you/they diagnosed?: 3 Jul 2015
- Age at diagnosis: 58
21 posts
• Page 1 of 3 • 1, 2, 3