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Re: High risk myeloma? If so, please share your story.
I read these posts and am in a panic. I also have high risk, t4:14, amp 1q and 13 del. I am smoldering and will need treatment when any of my values or PET changes, been holding steady the last 6 months. I was prepared to of tandem autos. I am now realizing that this may not be the case. Is auto/allo the better treatment for the high risk? I am an RN and am suprise by what little I have been willing to learn, like my head in the sand? Auto/allo...pretty scary.
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Jules k
Re: High risk myeloma? If so, please share your story.
Lizzie, you are not alone. I am trying to connect with high-risk multiple myeloma patients too. Since my brother was diagnosed in November 14, 2013, I noticed that it seems this is a small group of patients, or a group of patients that do not share their story. It is sad because we need to bring our story and treatment experience so that we can network and to find what treatments options are out there for this group. My brother so far has responded god to Revlimid/Velcade/dex. He is lucky he has the Weill Cornell Myeloma Center In New York City, that's where he goes for treatment.
His M-spike was 2.5 in dec 2, last week was .40, and his doctor told him they will be discussing stem cell transplant. I made contact with StandingTall, also high risk multiple myeloma patient, he is also responding good to treatment and is traveling to Seattle for auto transplant, and will also do an allo as soon as they find a match. It seems for high risk, it is another option. I believe there are options out there for HR-MM and it is important to stay in touch for networking and to support each other.
Thanks all for sharing their stories please keep updating your experiences.
God Bless You All
His M-spike was 2.5 in dec 2, last week was .40, and his doctor told him they will be discussing stem cell transplant. I made contact with StandingTall, also high risk multiple myeloma patient, he is also responding good to treatment and is traveling to Seattle for auto transplant, and will also do an allo as soon as they find a match. It seems for high risk, it is another option. I believe there are options out there for HR-MM and it is important to stay in touch for networking and to support each other.
Thanks all for sharing their stories please keep updating your experiences.
God Bless You All
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wsuarez - Name: Wanda
- Who do you know with myeloma?: My Brother
- When were you/they diagnosed?: November 14, 2013
- Age at diagnosis: 55
Re: High risk myeloma? If so, please share your story.
Thanks, everyone, for all the great comments in this thread.
For the current definition of "high-risk" multiple myeloma, please see this Beacon article:
"Experts Publish Consensus Risk Classification For Multiple Myeloma"
As you'll see, the definition involves a patient's chromosomal abnormalities, ISS stage, and age. Many physicians, however, often focus on just a patient's chromosomal abnormalities.
There is also a Beacon topic (tag) page for articles related to high-risk myeloma. You can view it here:
https://myelomabeacon.org/tag/high-risk-multiple-myeloma/
Finally, please keep in mind that high-risk multiple myeloma and high-risk smoldering myeloma are not exactly the same thing.
With multiple myeloma, "risk" is really a guess at how hard it will be to treat a patient's myeloma, given the current drugs available to treat the disease. High-risk disease is, on average, disease that is harder to treat with current drugs. (But remember: each high-risk patient is different!)
With smoldering myeloma, "risk" is a guess at how likely the patient is to progress to active, symptomatic multiple myeloma. High-risk smoldering myeloma patients are, on average, more likely to progress to multiple myeloma.
The factors that play a role in each of these classifications are similar. But the concepts are a bit different.
For the current definition of "high-risk" multiple myeloma, please see this Beacon article:
"Experts Publish Consensus Risk Classification For Multiple Myeloma"
As you'll see, the definition involves a patient's chromosomal abnormalities, ISS stage, and age. Many physicians, however, often focus on just a patient's chromosomal abnormalities.
There is also a Beacon topic (tag) page for articles related to high-risk myeloma. You can view it here:
https://myelomabeacon.org/tag/high-risk-multiple-myeloma/
Finally, please keep in mind that high-risk multiple myeloma and high-risk smoldering myeloma are not exactly the same thing.
With multiple myeloma, "risk" is really a guess at how hard it will be to treat a patient's myeloma, given the current drugs available to treat the disease. High-risk disease is, on average, disease that is harder to treat with current drugs. (But remember: each high-risk patient is different!)
With smoldering myeloma, "risk" is a guess at how likely the patient is to progress to active, symptomatic multiple myeloma. High-risk smoldering myeloma patients are, on average, more likely to progress to multiple myeloma.
The factors that play a role in each of these classifications are similar. But the concepts are a bit different.
Re: High risk myeloma? If so, please share your story.
Hi Lizzie,
To answer your question, I had my allo-transplant at Moffitt Cancer Center in Tampa, Florida. My transplant doctor is top rate, his name is Claudio Anasetti. I don't think that I have met a more compassionate human being. My myeloma specialist in Tampa was Dr. Alsina, also excellent, although she was only involved in setting up my therapy in prep for transplant, but if I need to go back on therapy later on, she is the doctor my oncologist defers to.
As I stated in other posts, I was shocked at how quickly my myeloma progressed. Within 2 months my blood values plummeted, my m-spike soared and my IgA values went through the roof. However, I quickly responded to treatment. Your particular high risk subgroup responds well to Velcade, which gives all of us hope that new treatments will be available that will likewise reduce our risk status.
My transplant team did not recommend an auto-allo transplant nor a tandem auto transplant, based on their clinical trials. For me they felt that an early allo was the way to go (different transplant specialists have different opinions, so find someone you trust and do your homework, my doctor supplied me with the results of Moffitt's clinical studies using allo transplants early on once first remission is achieved in high risk myeloma). They also are not recommending maintenance therapy as they don't want to blunt the graft vs tumor effect (your doctor's may recommend maintenance, again, everyone is different).
I was lucky in that I did not suffer bone loss, but I have talked to patients who have had kyphoplasty and as a result of this procedure they have regained some of their lost height.
I believe that you have to be aggressive early on with this disease. My younger brother who is a cancer survivor told me that if ever there was a time to fight, now is the time! So far, his advice has served me well.
Hugs
Susan
To answer your question, I had my allo-transplant at Moffitt Cancer Center in Tampa, Florida. My transplant doctor is top rate, his name is Claudio Anasetti. I don't think that I have met a more compassionate human being. My myeloma specialist in Tampa was Dr. Alsina, also excellent, although she was only involved in setting up my therapy in prep for transplant, but if I need to go back on therapy later on, she is the doctor my oncologist defers to.
As I stated in other posts, I was shocked at how quickly my myeloma progressed. Within 2 months my blood values plummeted, my m-spike soared and my IgA values went through the roof. However, I quickly responded to treatment. Your particular high risk subgroup responds well to Velcade, which gives all of us hope that new treatments will be available that will likewise reduce our risk status.
My transplant team did not recommend an auto-allo transplant nor a tandem auto transplant, based on their clinical trials. For me they felt that an early allo was the way to go (different transplant specialists have different opinions, so find someone you trust and do your homework, my doctor supplied me with the results of Moffitt's clinical studies using allo transplants early on once first remission is achieved in high risk myeloma). They also are not recommending maintenance therapy as they don't want to blunt the graft vs tumor effect (your doctor's may recommend maintenance, again, everyone is different).
I was lucky in that I did not suffer bone loss, but I have talked to patients who have had kyphoplasty and as a result of this procedure they have regained some of their lost height.
I believe that you have to be aggressive early on with this disease. My younger brother who is a cancer survivor told me that if ever there was a time to fight, now is the time! So far, his advice has served me well.
Hugs
Susan
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svbriggs
Re: High risk myeloma? If so, please share your story.
sbriggs,
Was your allo a reduced intensity procedure (mini-allo)?
I appreciate your earlier comment on the other thread that you likely would have waited to have one, but in your situation, there simply wasn't a choice.
I'm trying to find the latest morbidity rates for mini-allos. I seem to find some informal info that it is now about 10% in the first 6 months and 15% for the first year. Are there actually any formal, recent retrospective studies on morbidity rates for a stand-alone mini-allo (or, for that matter, a "conventional" allo (if that is the right term)?
Glad things worked out well for you and that you had a crack team to work with.
Was your allo a reduced intensity procedure (mini-allo)?
I appreciate your earlier comment on the other thread that you likely would have waited to have one, but in your situation, there simply wasn't a choice.
I'm trying to find the latest morbidity rates for mini-allos. I seem to find some informal info that it is now about 10% in the first 6 months and 15% for the first year. Are there actually any formal, recent retrospective studies on morbidity rates for a stand-alone mini-allo (or, for that matter, a "conventional" allo (if that is the right term)?
Glad things worked out well for you and that you had a crack team to work with.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High risk myeloma? If so, please share your story.
Jules k wrote: "I read these posts and am in a panic. I also have high risk, t4:14, amp 1q and 13 del. I am smoldering and will need treatment when any of my values or PET changes, been holding steady the last 6 months. I was prepared to of tandem autos. I am now realizing that this may not be the case. Is auto/allo the better treatment for the high risk? I am an RN and am suprise by what little I have been willing to learn, like my head in the sand? Auto/allo...pretty scary."
Hi Jules. It is scary but the good news is that even though my guy was literally breaking as soon as it was diagnosed the Velcade / dex / Revlimid and bone shots got things back on track. He also has t4:14 and responds incredibly to treatment. We are going to be called in the next two weeks for auto transplant - he harvested on October 24. He is on the emergency waiting list so we are just waiting for a bed. Other then being tired he is doing ok. No pain. Just very fatigued.
Hi Jules. It is scary but the good news is that even though my guy was literally breaking as soon as it was diagnosed the Velcade / dex / Revlimid and bone shots got things back on track. He also has t4:14 and responds incredibly to treatment. We are going to be called in the next two weeks for auto transplant - he harvested on October 24. He is on the emergency waiting list so we are just waiting for a bed. Other then being tired he is doing ok. No pain. Just very fatigued.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: High risk myeloma? If so, please share your story.
Hi Multibilly,
I was a candidate for high dose melphalan, but my transplant doctor wanted me to participate in an ongoing clinical trial using half dose melphalan, fludarabine, and bortezomib. I ended up going off-study as the Velcade people felt that I was at higher risk because of my stem cell donor's age. I wanted to participate in anyway that I could to help progress the knowledge base in treating this cancer. When I did not go into remission by the third month, and my free light chains started rising, I wondered if I had made the right decision, even my doctors were concerned. My M-spike remained at my pre-transplant level of 1.0.
I made some dietary changes at that time (this may be strictly coincidental), but after reading Dr. Campbell's "The China Study", I decided to cut all dairy from my diet (I am a big cheese fan). On my next labs about a month later, my free light chains had dropped dramatically (although my M-spike remained at 1.0). By November, all of my levels became normal and I was determined to be in sCR. Dr. Campbell has found some evidence that the casein and naturally occurring growth factors in dairy may stimulate the growth of cancer cells (from animal studies).
I don't know if it was the change in diet or if my donor's T cells kicked in, or a combination of both, but I am glad to be in remission.
I thought about pursuing a more aggressive approach, as they are doing in Arkansas, but I was concerned about cardiac damage and secondary cancers. I would hate to go through such a demanding protocol just to end up with melanoma, leukemia or relapse. Then, your options are really limited.
Susan
I was a candidate for high dose melphalan, but my transplant doctor wanted me to participate in an ongoing clinical trial using half dose melphalan, fludarabine, and bortezomib. I ended up going off-study as the Velcade people felt that I was at higher risk because of my stem cell donor's age. I wanted to participate in anyway that I could to help progress the knowledge base in treating this cancer. When I did not go into remission by the third month, and my free light chains started rising, I wondered if I had made the right decision, even my doctors were concerned. My M-spike remained at my pre-transplant level of 1.0.
I made some dietary changes at that time (this may be strictly coincidental), but after reading Dr. Campbell's "The China Study", I decided to cut all dairy from my diet (I am a big cheese fan). On my next labs about a month later, my free light chains had dropped dramatically (although my M-spike remained at 1.0). By November, all of my levels became normal and I was determined to be in sCR. Dr. Campbell has found some evidence that the casein and naturally occurring growth factors in dairy may stimulate the growth of cancer cells (from animal studies).
I don't know if it was the change in diet or if my donor's T cells kicked in, or a combination of both, but I am glad to be in remission.
I thought about pursuing a more aggressive approach, as they are doing in Arkansas, but I was concerned about cardiac damage and secondary cancers. I would hate to go through such a demanding protocol just to end up with melanoma, leukemia or relapse. Then, your options are really limited.
Susan
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SVBriggs
Re: High risk myeloma? If so, please share your story.
P.S. to Multibilly,
As to risk, my doctors said it was around 20% morbidity, overall. I asked my transplant doctor what my personal risk factor was and he said minimal because of my age and overall health. So don't get hung up on statistics, the risk is different for each patient. The biggest problem is infection and I had a great caregiver who while I was in her care avoided going out in public and was conscientious about hand washing. I still keep a bottle of hand sanitizer with me in my car and on my person at all times.
As to risk, my doctors said it was around 20% morbidity, overall. I asked my transplant doctor what my personal risk factor was and he said minimal because of my age and overall health. So don't get hung up on statistics, the risk is different for each patient. The biggest problem is infection and I had a great caregiver who while I was in her care avoided going out in public and was conscientious about hand washing. I still keep a bottle of hand sanitizer with me in my car and on my person at all times.
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SVBriggs
Re: High risk myeloma? If so, please share your story.
Thanks SVB,
That's interesting about the dairy angle and your personal results (I don't want to derail this thread on that topic), but it would be interesting to explore on another thread. I am also in the process of largely giving up dairy. I'll have to check out that book.
For the sake of balance on the topic of allos, I am including a link to Dr. Durie's views on this. Having posted this, I want to add that I clearly get that for some folks on this forum that an allo literally saved their life and that every one's situation wrt multiple myeloma is a snow flake.
That's interesting about the dairy angle and your personal results (I don't want to derail this thread on that topic), but it would be interesting to explore on another thread. I am also in the process of largely giving up dairy. I'll have to check out that book.
For the sake of balance on the topic of allos, I am including a link to Dr. Durie's views on this. Having posted this, I want to add that I clearly get that for some folks on this forum that an allo literally saved their life and that every one's situation wrt multiple myeloma is a snow flake.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High risk myeloma? If so, please share your story.
I do raw dairy with no problems from my own cows. The China study was a flaw. I have the 4;14 translocation. 14 months since diagnosis, no drugs.
I wanted to add, I wouldn't drink or eat commercial dairy. I do eat a lot of animal protein and fats from grass fed meats.
I wanted to add, I wouldn't drink or eat commercial dairy. I do eat a lot of animal protein and fats from grass fed meats.
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