My 74 year old husband was recently diagnosed with mutiple myeloma. I am just interested in what anyone knows, especially doctors monitoring the forums, what my husband might expect at his age and with these genetic challenges.
His bone marrow study came back with the following: " has Statistical evidence of a hemizygous deletion of both 13q14.3 (D13S319) and 13q34 (LAMP1), a IGH@/MAF rearrangement [(14;16)], a deletion of 16q23 (MAF) and a deletion for 17p13.1 (TP53, p53) by FISH."
He is currently on Velcade/dex and will be starting his 4th cycle. At diagnosis he had multiple lesions including spine, rib, and skull. He has had radiation to shrink tumor bulging into his spine and currently has no pain. His albumin at diagnosis was 3.1 and his beta 2 was 1.7. His hemoglobin was 10.
Would a transplant be of benefit to him? Does anyone have thoughts on his prognosis and any words of wisdom as we start heading down this road. He seems to be responding very well to the Velcade/dex.
Thanks.
Forums
Re: High Risk Myeloma - outlook
We treated at Little Rock and they published a paper/presentation on what they are uncovering about the "high risk" multiple myeloma group. Little Rock does gene array analysis in their basic tests. I have met several patients there who are classed as high risk that are doing quite well, and of course, there are those who don't. However, this is also quite true of the low risk group as well. People I think should easily make it don't, and visa versa. Here is the link to a synopsis of their research on this.
http://www.uamshealth.com/news/?id=5351&sid=1&nid=8849&cid=6
Also while there, I met many "older" patients and was quite amazed at how well many of them did through the SCT process. It is not easy, to be sure. Medicare only covers for one, while Little Rock prefers a tandem SCT protocol as their frontline therapy. But they will treat patients who can only have one through their insurance coverage.
Hope this a little bit helpful. I had noticed no one responded, so I wanted to at least make a stab at it to get you going further along in your research. For older patients the good news is they probably will not outlive the potential long term side effects from treatment. Those who are younger, may beat the disease long term, but have to face the side effects that appear from the treatment down the line. These are not easy choices.
Currently a patient typically has to choose between "managing" the disease vs. trying to "eradicate" the disease. If a patient is high risk, the question I would have would be, "can a high risk patient be managed?" I would guess it is difficult to manage a high risk presentation. But I'm not a physician, and sometimes basic logic does not translate in treating disease. Hopefully, someone else on the forum will be able to help further.
Best to you,
Lori
http://www.uamshealth.com/news/?id=5351&sid=1&nid=8849&cid=6
Also while there, I met many "older" patients and was quite amazed at how well many of them did through the SCT process. It is not easy, to be sure. Medicare only covers for one, while Little Rock prefers a tandem SCT protocol as their frontline therapy. But they will treat patients who can only have one through their insurance coverage.
Hope this a little bit helpful. I had noticed no one responded, so I wanted to at least make a stab at it to get you going further along in your research. For older patients the good news is they probably will not outlive the potential long term side effects from treatment. Those who are younger, may beat the disease long term, but have to face the side effects that appear from the treatment down the line. These are not easy choices.
Currently a patient typically has to choose between "managing" the disease vs. trying to "eradicate" the disease. If a patient is high risk, the question I would have would be, "can a high risk patient be managed?" I would guess it is difficult to manage a high risk presentation. But I'm not a physician, and sometimes basic logic does not translate in treating disease. Hopefully, someone else on the forum will be able to help further.
Best to you,
Lori
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: High Risk Myeloma - outlook
Lori,
Thank you so much for your helpful comments. I think right now we are trying to sort through whether he should go for a transplant. His oncologist seems to be pushing for it so we met with the transplant doctor who also seemed to be pushing for it (admitting his bias since that was what he did), although he did acknowledge that he expected my husband to relapse sooner because of his genetic issues. The transplant doctor also seemed to make it clear that it was a tough call in my husband's case and that a decision to do the transplant or not do it -- either one would be rational. My husband is leaning toward not doing a transplant because, though by his blood counts he has responded well to the Velcade/dex, he has had a hard time physically with the treatments and he doesn't think he can handle a transplant. This is a scary disease and I am grateful I discovered the Myeloma Beacon and the forums. It means so much to read what others who have the illness, and those who love and take care of them, write and share. Again, I want to thank you for taking the time to respond to my post. I hope you and your husband are doing well.
Thank you so much for your helpful comments. I think right now we are trying to sort through whether he should go for a transplant. His oncologist seems to be pushing for it so we met with the transplant doctor who also seemed to be pushing for it (admitting his bias since that was what he did), although he did acknowledge that he expected my husband to relapse sooner because of his genetic issues. The transplant doctor also seemed to make it clear that it was a tough call in my husband's case and that a decision to do the transplant or not do it -- either one would be rational. My husband is leaning toward not doing a transplant because, though by his blood counts he has responded well to the Velcade/dex, he has had a hard time physically with the treatments and he doesn't think he can handle a transplant. This is a scary disease and I am grateful I discovered the Myeloma Beacon and the forums. It means so much to read what others who have the illness, and those who love and take care of them, write and share. Again, I want to thank you for taking the time to respond to my post. I hope you and your husband are doing well.
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valerie - Name: Valerie
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: June, 2010
- Age at diagnosis: 74
Re: High Risk Myeloma - outlook
Valerie, we were going through the same decision making process you and your husband are regarding transplant. My husband is 61 and had almost every side affect listed for Velcade (and had not even seen the list - I just checked them off when they happened. So when deciding on the next step those things were at the top of the list on why not to do the transplant. The myeloma affected his kidneys so that is a huge concern to us -- however, the other workup tests indicated he would be ok in those areas (heart/lung). We were so indecisive so I asked him - if it were me with the multiple myeloma - what would you say. He said - I would tell you it's your decision and I will support your decision. So...he made the decision to go ahead to do it now while it has been beaten down by the Velade/Dex. My prayers to you both as you take the next step. I will also say, the transplant center said there were other options and none of them were wrong -- so you might ask about those.
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Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: High Risk Myeloma - outlook
Valerie: My husband was 72 at the time of confirmed diagnosis October 7, 2010 - Stage III multiple myeloma. He injured his back while golfing, otherwise he might not have been diagnosed since he seemed to be in pretty good health. Once he injured his back, his health went downhill rapidly.
He had no lesions, but has a Compression Fracture in the L1. He was anemic, and his liver and kidney functions were both abnormal. His M-Spike was 5.44. He has responded well to Velcade/Dex and is in partial remission with M-Spike of 0.3.
The treatment for the multiple myeloma is going well, but he has had almost uncontrollable pain in his back and legs. His Oncologist/Hematologist has "experimented" with every kind of drug to give him relief (Neurontin, MS-Contin, Dilaudid, Fentanyl Patches, Vertebroplasty, Zometa). The only thing that really helps - even though it weakens his bones - is the steroids.
He was referred to a Neurological Spine Specialist who thinks that the Compression Fracture is too small to be causing so much pain - and my husband has a very high level of tolerance. He prescribed a custom back brace to help his spine support his frame. It's too early to determine if this will work.
He is in Cycle 5 and will soon be ready to be referred for a SCT work up. We have concerns about the stress that the SCT will put on his body, at his age, even though he seems to be in pretty good health. What will his prognosis be without it? What will his prognosis be with it? How much more can the body stand?
We're just thankful for every day - good or bad, and we take nothing for granted. It certainly wasn't how we expected to spend our retirement!
Blessings to all of you.
Sarah
http://ourjourneywithmm.blogspot.comv
He had no lesions, but has a Compression Fracture in the L1. He was anemic, and his liver and kidney functions were both abnormal. His M-Spike was 5.44. He has responded well to Velcade/Dex and is in partial remission with M-Spike of 0.3.
The treatment for the multiple myeloma is going well, but he has had almost uncontrollable pain in his back and legs. His Oncologist/Hematologist has "experimented" with every kind of drug to give him relief (Neurontin, MS-Contin, Dilaudid, Fentanyl Patches, Vertebroplasty, Zometa). The only thing that really helps - even though it weakens his bones - is the steroids.
He was referred to a Neurological Spine Specialist who thinks that the Compression Fracture is too small to be causing so much pain - and my husband has a very high level of tolerance. He prescribed a custom back brace to help his spine support his frame. It's too early to determine if this will work.
He is in Cycle 5 and will soon be ready to be referred for a SCT work up. We have concerns about the stress that the SCT will put on his body, at his age, even though he seems to be in pretty good health. What will his prognosis be without it? What will his prognosis be with it? How much more can the body stand?
We're just thankful for every day - good or bad, and we take nothing for granted. It certainly wasn't how we expected to spend our retirement!
Blessings to all of you.
Sarah
http://ourjourneywithmm.blogspot.comv
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: High Risk Myeloma - outlook
Sarah
My husband has been on a chemo break because he has had neuropathy side effects from the Velcade/dex. However, a greater source of agony for him has been pain in his lower abdominal/groin area which has been absolutely debilitating for him. We have determined that it is a nerve issue and so he has recently been prescribed neurontin. We are thinking that this nerve pain may well be from the Velcade also but am wondering if others have experienced nerve pain other than in their hands and feet that may be chemo related. He also has lost so much weight and as his caregiver, it is so hard to watch him suffering. I also feel like his health is going downhill. We have future appointments with physical therapy and pain management people so I am hoping we can get him back on track. You and your husband have my sympathies. I have watched him suffer with this nerve pain and it is terrible. I am just hoping it will ease up for him. Your comment about the steroids is interesting. We see doctor next week about future course and perhaps he should at least re-start the steroids. As far as transplant is concerned, "habubrat" a/k/a Lori makes an excellent point about "managing" vs. "eradicating" the disease. We are "managing" and controlling the myeloma with drugs. Each individual is different. We are having a good day today and you are right. We need to enjoy and be thankful for the good days.
My husband has been on a chemo break because he has had neuropathy side effects from the Velcade/dex. However, a greater source of agony for him has been pain in his lower abdominal/groin area which has been absolutely debilitating for him. We have determined that it is a nerve issue and so he has recently been prescribed neurontin. We are thinking that this nerve pain may well be from the Velcade also but am wondering if others have experienced nerve pain other than in their hands and feet that may be chemo related. He also has lost so much weight and as his caregiver, it is so hard to watch him suffering. I also feel like his health is going downhill. We have future appointments with physical therapy and pain management people so I am hoping we can get him back on track. You and your husband have my sympathies. I have watched him suffer with this nerve pain and it is terrible. I am just hoping it will ease up for him. Your comment about the steroids is interesting. We see doctor next week about future course and perhaps he should at least re-start the steroids. As far as transplant is concerned, "habubrat" a/k/a Lori makes an excellent point about "managing" vs. "eradicating" the disease. We are "managing" and controlling the myeloma with drugs. Each individual is different. We are having a good day today and you are right. We need to enjoy and be thankful for the good days.
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valerie - Name: Valerie
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: June, 2010
- Age at diagnosis: 74
Re: High Risk Myeloma - outlook
Valerie: We both need some good luck in having a determination as to the source of our husband's pain. It's terrible to watch them in so much pain, knowing there's nothing we can do.
Good luck!
Sarah
Good luck!
Sarah
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: High Risk Myeloma - outlook
Not much luck today. Received bad news that my husband has very aggressive myeloma and it has now become plasma cell leukemia where the plasma cells are now circulating in the bloodstream. He is going to start on Revlimid as soon as we can get it delivered. I am not sure how well it will work. We are really in shock. His numbers all looked good just a month ago.
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valerie - Name: Valerie
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: June, 2010
- Age at diagnosis: 74
Re: High Risk Myeloma - outlook
Valerie:
My heart goes out to you and your husband. I can almost feel your pain, and know what you are going through.
Thoughts and prayers are with you,
Sarah
My heart goes out to you and your husband. I can almost feel your pain, and know what you are going through.
Thoughts and prayers are with you,
Sarah
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: High Risk Myeloma - outlook
Thank you for your kind words. This is overwhelming but we are hopeful he will respond to the new treatment and still have some good quality time. I try to live with a feeling of gratitude and I intend to be grateful for each day we have together because he is one of a kind. I hope your husband is doing better with his pain. Mine went to a pain specialist yesterday and they have upped his neurontin and he is getting a nerve block next week. He is encouraged that this will provide him relief. Best wishes.
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valerie - Name: Valerie
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: June, 2010
- Age at diagnosis: 74
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