Many thanks to the Beacon for this great resource. I wouldn't know what to do without the volumes of information on this site.
My wife, 67 years old, was diagnosed with IgA lambda multiple myeloma in March, 2016. This discovery was the result of a yearly physical with our family doctor. An M-spike of 1.0 g/dl (10 g/l) appeared in her blood tests, and our family doctor referred her to a local hematologist oncologist at Franciscan Cancer Center, Gig Harbor, Washington, and another hematologist oncologist at Swedish Cancer Center, Seattle, Washington.
At our first appointment, the hematologist-oncologist in Gig Harbor ordered additional blood tests. In the four weeks between blood tests, her M-spike increased from 1 g/dl to 2.1 g/dl. This rapid increase alarmed the doctor, who immediately ordered a bone marrow biopsy. This biopsy revealed 60% plasma cells in her bone marrow.
For several months before diagnosis, she kept saying she felt in a funk. Now we know why, she was having bouts of anemia. She also has one bone lesion in her back causing some pain, but not unbearable.
The local hematologist oncologist stated this multiple myeloma was aggressive and needed to be treated right away. We're not sure what makes this multiple myeloma aggressive, or if all multiple myeloma is aggressive. According to her FISH test, she has high risk cytogenetics:
Positive for Deletion in 1P, (CDKN2C)
Positive for Amplification of 1Q
Positive for -13 (monosomy 13)
Positive for t(4;14) (p16;q32)
Positive for three copies of IgH
Prognostic Significance: Poor
We sought a second opinion with at Swedish Cancer Clinic in Seattle, WA. A hematologist oncologist there confirmed the diagnosis of multiple myeloma and recommended my wife start treatment immediately with plan to have a stem cell transplant in fall, 2016. We were in shock. My wife was in tears. Our lives have changed.
She immediately started on 6 cycles (two weeks on, one week off) of Velcade, Revlimid, and dexamethasone (VRD). She had an immediate reaction to the Revlimid, a severe rash all over her body. They reduced the amount of Revlimid, put her on Claritin (loratadine), and it worked great. No more rash. Some minor neuropathy through four cycles of treatment. She takes glutamine three times daily which is supposed to help with neuropathy. Once a month she has a Zometa infusion for bone loss.
After four cycles of VRD treatment, her M-spike is zero. Her light chains are normal. Everything is within normal range. She is tired in the evening and goes to bed early. She still has some minor pain in her back. Otherwise, things are on track for a stem cell transplant soon. We're hopeful for a successful stem cell transplant with complete remission. I will report back later with the update.
Wayne
Forums
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Wife with high-risk IgA lambda multiple myeloma
Hi Wayne,
Glad to see that your wife has responded well to treatment.
The "Positive for Deletion in 1P, (CDKN2C)" finding in her FISH results is what very likely classified her as being high-risk. Depending on the kind of genetic abnormalities found in the FISH results, one may be classified as have standard, intermediate, or high risk multiple myeloma.
Glad to see that your wife has responded well to treatment.
The "Positive for Deletion in 1P, (CDKN2C)" finding in her FISH results is what very likely classified her as being high-risk. Depending on the kind of genetic abnormalities found in the FISH results, one may be classified as have standard, intermediate, or high risk multiple myeloma.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Wife with high-risk IgA lambda multiple myeloma
Hi Multibilly
Thanks for the welcome and your response. I've read many of your posts since March of this year. You have a kind way with words. Me, not so much. I'm more brawn than brain, but I try.
You stated, the high risk might be because of "Positive for Deletion in 1P, (CDKN2C)". Could you explain what you meant by this or your reference for this thought. I thought the high risk was because of >2 risk markers and positive for three copies of IgH. I've likely missed something.
Wayne
Thanks for the welcome and your response. I've read many of your posts since March of this year. You have a kind way with words. Me, not so much. I'm more brawn than brain, but I try.
You stated, the high risk might be because of "Positive for Deletion in 1P, (CDKN2C)". Could you explain what you meant by this or your reference for this thought. I thought the high risk was because of >2 risk markers and positive for three copies of IgH. I've likely missed something.
Wayne
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Wife with high-risk IgA lambda multiple myeloma
Hi Wayne.
Here is a review article on cytogenetics (chromosomal abnormalities). The second author, Dr Rajkumar, has written columns for The Beacon and is at the Mayo Clinic. Table 3 summarizes current thinking on risk stratification:
Rajan, A.M. and Rajkumar, S.V., "Interpretation of cytogenetic results in multiple myeloma for clinical practice," Blood Cancer Journal, October 30, 2015 (full text of article)
Glad your wife is doing so well with her treatment!
We started meds in December with a similar protocol and cytogenetics, using Kyprolis (carfilzomib) instead of Velcade, and were also M-spike and light chain normal before the autologous transplant, which was done June 3rd. We went into the transplant with a negative MRD test which we will repeat around Labor Day, with planned consolidation after.
My husband still has fatigue and is now on month 7 of a nap and earlier bedtime, still with GI issues, but more of his pre-treatment self daily - though we'll never really be those two people again. But different can be good, and it will have to be. being off chemo has resulted in less chemo-fog and a better mood.
I tell friends we're as lucky as you can be with cancer and found Trevor Williams' column today particularly explanatory and well written.
Wishing you both the best.
Here is a review article on cytogenetics (chromosomal abnormalities). The second author, Dr Rajkumar, has written columns for The Beacon and is at the Mayo Clinic. Table 3 summarizes current thinking on risk stratification:
Rajan, A.M. and Rajkumar, S.V., "Interpretation of cytogenetic results in multiple myeloma for clinical practice," Blood Cancer Journal, October 30, 2015 (full text of article)
Glad your wife is doing so well with her treatment!
We started meds in December with a similar protocol and cytogenetics, using Kyprolis (carfilzomib) instead of Velcade, and were also M-spike and light chain normal before the autologous transplant, which was done June 3rd. We went into the transplant with a negative MRD test which we will repeat around Labor Day, with planned consolidation after.
My husband still has fatigue and is now on month 7 of a nap and earlier bedtime, still with GI issues, but more of his pre-treatment self daily - though we'll never really be those two people again. But different can be good, and it will have to be. being off chemo has resulted in less chemo-fog and a better mood.
I tell friends we're as lucky as you can be with cancer and found Trevor Williams' column today particularly explanatory and well written.
Wishing you both the best.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Wife with high-risk IgA lambda multiple myeloma
Hi Wayne,
The excellent article that Rick mentions above is usually the reference guide I go to when trying to better understand risk classification based on cytogenetics. In your case, look at Table 3 and you will see why I mentioned that the del 1p abnormality was likely the primary reason for the high risk classification.
However, risk classification of multiple myeloma is somewhat subjective in multiple myeloma professional circles and seems to vary from specialist to specialist. So, it would be good to ask your wife's specialist why he/she considers your wife to be high risk.
The excellent article that Rick mentions above is usually the reference guide I go to when trying to better understand risk classification based on cytogenetics. In your case, look at Table 3 and you will see why I mentioned that the del 1p abnormality was likely the primary reason for the high risk classification.
However, risk classification of multiple myeloma is somewhat subjective in multiple myeloma professional circles and seems to vary from specialist to specialist. So, it would be good to ask your wife's specialist why he/she considers your wife to be high risk.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Wife with high-risk IgA lambda multiple myeloma
Hi Rick
Thanks for the great article on cytogenetics (chromosomal abnormalities). This was the most complete article on cytogenetics that I've seen and read. I very much appreciate your response.
I've been a bit disheartened by some of the posts regarding IgA multiple myeloma and especially those with high-risk cytogenetics. My wife doesn't want to discuss these risk factors with her doctors or me. She believes they will recommend best course of treatment without discussion of risk factors. I, of course, have many questions about these risk factors but don't want to discuss them with the specialists in front of my wife. Therefore, they don't get talked about in the course of her treatment or at home. I get it, having a positive attitude and outlook about this disease is especially important for everyone involved, but especially her. I've turned to the Myeloma Beacon as my resource for a better understanding of this. Thanks again to you for highlighting this article.
Am I reading it correctly, that your husband is going in for a second transplant this fall? I wish you the best with the treatment. We know what an undertaking and challenge a double transplant is. We've a friend that just completed her second transplant at the University of Arkansas. She is in remission and starting maintenance therapy with Ninlaro. She is two+ years into her diagnosis and treatment. Her and her husband have been an amazing support for us, and we are extremely grateful for their support and friendship.
I hope you'll stay in touch and let me know how your husband is doing. I wish you both the best.
Multibilly, thanks again for your response. I agree with you about this article on cytogenetics. It will now be my resource for chromosomal abnormalities.
Thanks for the great article on cytogenetics (chromosomal abnormalities). This was the most complete article on cytogenetics that I've seen and read. I very much appreciate your response.
I've been a bit disheartened by some of the posts regarding IgA multiple myeloma and especially those with high-risk cytogenetics. My wife doesn't want to discuss these risk factors with her doctors or me. She believes they will recommend best course of treatment without discussion of risk factors. I, of course, have many questions about these risk factors but don't want to discuss them with the specialists in front of my wife. Therefore, they don't get talked about in the course of her treatment or at home. I get it, having a positive attitude and outlook about this disease is especially important for everyone involved, but especially her. I've turned to the Myeloma Beacon as my resource for a better understanding of this. Thanks again to you for highlighting this article.
Am I reading it correctly, that your husband is going in for a second transplant this fall? I wish you the best with the treatment. We know what an undertaking and challenge a double transplant is. We've a friend that just completed her second transplant at the University of Arkansas. She is in remission and starting maintenance therapy with Ninlaro. She is two+ years into her diagnosis and treatment. Her and her husband have been an amazing support for us, and we are extremely grateful for their support and friendship.
I hope you'll stay in touch and let me know how your husband is doing. I wish you both the best.
Multibilly, thanks again for your response. I agree with you about this article on cytogenetics. It will now be my resource for chromosomal abnormalities.
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Wife with high-risk IgA lambda multiple myeloma
Hi Wayne.
I get so much of what you are saying. My husband has only let down his guard with me a handful of times in the last 7+ months. He needs a positive outlook and states that if the doctors need to discuss any other risks or issues (any negative possibility), they'll run it by me. He is vocal with what he is feeling and his symptoms and with what we are doing, but feels he has too much on his plate for other "what ifs".
He hated (I learned) when I said "survival" or "odds" even in general conversation. He is however convinced he will have the best possible outcome as he has a well respected specialist and is following a plan. He is doing all he can - eating nutritious foods, exercising as he can, napping and resting, practicing mindfulness, following the protocol exactly, and living what he enjoys. He's cut much of the negative from his life and is exploring meaning more.
It gets even more complicated in that I am an internist and my nature is the opposite. I need to hear everything, and read, and plan, and then research it again and plan some more. I ask a lot of questions for a living. I like options and contingencies.
I thought I knew about caregiving, as I've had hundreds of caregiver conversations and family conferences. I work hard for my own patients. I knew nothing, not the work or the grief. Occasionally I just ask my questions and so far my whys have been mostly helpful to his understanding as well.
We had a really negative experience with our first doctor (though I imagine some of that was just the news) – a very nice woman who led with a bad finish. She started with "I'm sorry it's myeloma, there's no cure and you'll die from this", Eventually getting to treatment options, but unaware of the implications of the cytogenetics she had ordered. She led with death; we heard little else. She was flustered when I brought up the cytogenetics and their implications for therapy. but she was open to getting us to a specialist and diligent in her workup, which made our treatment and transition easy. That car ride home was all silence and tears, our low.
We're hopefully done with the transplants for a while after just the one in June. It was surprisingly easy for him versus what we were told and read. My husband was thankfully MRD negative going into the transplant. We get another bone marrow biopsy (to check for plasma cells and run another MRD test) in September before consolidation chemotherapy. Our doctor is planning 4 months of consolidation chemotherapy and then a long maintenance, yet to be defined, depending on my husband's response. Which so far has been great.
I'll stay in touch and hope you do the same. This site and forum has really helped me think and plan but also to learn and just get comfortable in my sadness. Wish you both the best as well.
I get so much of what you are saying. My husband has only let down his guard with me a handful of times in the last 7+ months. He needs a positive outlook and states that if the doctors need to discuss any other risks or issues (any negative possibility), they'll run it by me. He is vocal with what he is feeling and his symptoms and with what we are doing, but feels he has too much on his plate for other "what ifs".
He hated (I learned) when I said "survival" or "odds" even in general conversation. He is however convinced he will have the best possible outcome as he has a well respected specialist and is following a plan. He is doing all he can - eating nutritious foods, exercising as he can, napping and resting, practicing mindfulness, following the protocol exactly, and living what he enjoys. He's cut much of the negative from his life and is exploring meaning more.
It gets even more complicated in that I am an internist and my nature is the opposite. I need to hear everything, and read, and plan, and then research it again and plan some more. I ask a lot of questions for a living. I like options and contingencies.
I thought I knew about caregiving, as I've had hundreds of caregiver conversations and family conferences. I work hard for my own patients. I knew nothing, not the work or the grief. Occasionally I just ask my questions and so far my whys have been mostly helpful to his understanding as well.
We had a really negative experience with our first doctor (though I imagine some of that was just the news) – a very nice woman who led with a bad finish. She started with "I'm sorry it's myeloma, there's no cure and you'll die from this", Eventually getting to treatment options, but unaware of the implications of the cytogenetics she had ordered. She led with death; we heard little else. She was flustered when I brought up the cytogenetics and their implications for therapy. but she was open to getting us to a specialist and diligent in her workup, which made our treatment and transition easy. That car ride home was all silence and tears, our low.
We're hopefully done with the transplants for a while after just the one in June. It was surprisingly easy for him versus what we were told and read. My husband was thankfully MRD negative going into the transplant. We get another bone marrow biopsy (to check for plasma cells and run another MRD test) in September before consolidation chemotherapy. Our doctor is planning 4 months of consolidation chemotherapy and then a long maintenance, yet to be defined, depending on my husband's response. Which so far has been great.
I'll stay in touch and hope you do the same. This site and forum has really helped me think and plan but also to learn and just get comfortable in my sadness. Wish you both the best as well.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Wife with high-risk IgA lambda multiple myeloma
Hi Rick,
I have to echo back what you said because it hit the nail on the head. Your husband said "he has too much on his plate for other "what ifs"." My wife said exactly those same words. Your husband wants to be "following the protocol exactly." My wife wants to be the "best patient ever". My wife can't bear any additional stress, especially about risk factors or other "numbers".
I'm like you, I learned to ask a lot of questions and prepare contingency plans. I'm always preparing for the next phase and hoping to glean as much information as I can in preparation for what the future will bring. That's why I'm on this mission to understand as much as possible about cytogenetic risk and how to mitigate it. My understanding of cytogenetic risk is that it's the amount of risk to likely relapse early after induction and stem cell transplant.
I posted on the multiple myeloma forum board, a topic about high risk myeloma and asked if anyone else had multiple high risk factors like my wife. One thing that seems clear from the responses to my post and my own reading is that there is no medical consensus as to what is "high risk, intermediate risk, and standard risk" in any of the medical abstracts, presentations or articles. This worries me that the medical community can't even agree on the definition of risk. "Holy Cow"!
Again, thanks for sharing your situation. I'm glad to hear your husband is MRD negative. Given the circumstances, that's a good place to be. I'm hoping my wife is there soon. We're meeting the stem cell transplant doctor next week.
Wayne
Lots of forests here in the Pacific Northwest. The forest is for crying.
I have to echo back what you said because it hit the nail on the head. Your husband said "he has too much on his plate for other "what ifs"." My wife said exactly those same words. Your husband wants to be "following the protocol exactly." My wife wants to be the "best patient ever". My wife can't bear any additional stress, especially about risk factors or other "numbers".
I'm like you, I learned to ask a lot of questions and prepare contingency plans. I'm always preparing for the next phase and hoping to glean as much information as I can in preparation for what the future will bring. That's why I'm on this mission to understand as much as possible about cytogenetic risk and how to mitigate it. My understanding of cytogenetic risk is that it's the amount of risk to likely relapse early after induction and stem cell transplant.
I posted on the multiple myeloma forum board, a topic about high risk myeloma and asked if anyone else had multiple high risk factors like my wife. One thing that seems clear from the responses to my post and my own reading is that there is no medical consensus as to what is "high risk, intermediate risk, and standard risk" in any of the medical abstracts, presentations or articles. This worries me that the medical community can't even agree on the definition of risk. "Holy Cow"!
Again, thanks for sharing your situation. I'm glad to hear your husband is MRD negative. Given the circumstances, that's a good place to be. I'm hoping my wife is there soon. We're meeting the stem cell transplant doctor next week.
Wayne
Lots of forests here in the Pacific Northwest. The forest is for crying.
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
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