Wow ... One year ago, my boyfriend of 11 years and I were planning a dream vacation. We went away for two weeks in February and right away he started experiencing a sore back (I always over pack). Spent the two weeks sunning and resting but his back didn't improve. Came home and he had a sore shoulder. Returned to work. Never thought much of it. He is 47. Good health but physical job. We all get aches and pains right?
Routine physical showed tumour behind lung. Blood work done but results didn't scream cancer. Biopsy arranged for beginning of May. A one night stay in hospital. That turned into 34 days in hospital. Biopsy resulted in broken hip when they went to move him. Operation to fix that resulted in broken neck and arm.
Diagnosed multiple myeloma May 18.
July was spinal collapse. He had been on Velcade and dex weekly since diagnosis. Now doing twice a week and Revlimid daily. Stopped treatment to prepare for SCT in October. 5 days no chemo equaled 9 new tumours. Almost lost his eye He is now on the emergency waiting list for SCT. However doctors are giving us months. Not years.
We are out of options and it's only been 8 months. Looking for a beacon of hope.
Anyone else experience such an aggressive form?
Forums
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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: 47 year-old, diagnosed in May
I am very, very sorry to hear about the situation with your boyfriend.
Are you in the U.S.? If so, your doctors may want to consider switching your boyfriend over to a combination of Kyprolis, Pomalyst, and dexamethasone. There have been a couple of studies that have shown it can be effective in relapsed patients.
If you are in Europe, Pomalyst combined with dexamethasone probably is also an option you could consider.
I suspect that, with your boyfriend's disease as aggressive as it is, he is going to do best with either a three-drug combination involving currently approved drugs, or a drug (or drug combination) that is still in clinical trials.
Drugs / drug combinations that are in clinical trials that you may want to discuss with your boyfriend's physicians include:
elotuzumab+Revlimid+dexamethasone
either daratumumab, SAR650984, or MOR202 (they are similar drugs; daratumumab is the furthest along in development and seems to be very effective)
You can search for clinical trials your boyfriend might be eligible for at http://www.clinicaltrials.gov. Use the advanced search feature to focus on trials with participating centers in your country. Type in "myeloma" as the "condition".
Please keep us posted on what you learn and don't hesitate to ask more questions.
And it goes without saying that, if you haven't already consulted with one more more myeloma specialists, please make sure you do.
Are you in the U.S.? If so, your doctors may want to consider switching your boyfriend over to a combination of Kyprolis, Pomalyst, and dexamethasone. There have been a couple of studies that have shown it can be effective in relapsed patients.
If you are in Europe, Pomalyst combined with dexamethasone probably is also an option you could consider.
I suspect that, with your boyfriend's disease as aggressive as it is, he is going to do best with either a three-drug combination involving currently approved drugs, or a drug (or drug combination) that is still in clinical trials.
Drugs / drug combinations that are in clinical trials that you may want to discuss with your boyfriend's physicians include:
elotuzumab+Revlimid+dexamethasone
either daratumumab, SAR650984, or MOR202 (they are similar drugs; daratumumab is the furthest along in development and seems to be very effective)
You can search for clinical trials your boyfriend might be eligible for at http://www.clinicaltrials.gov. Use the advanced search feature to focus on trials with participating centers in your country. Type in "myeloma" as the "condition".
Please keep us posted on what you learn and don't hesitate to ask more questions.
And it goes without saying that, if you haven't already consulted with one more more myeloma specialists, please make sure you do.
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JimNY
Re: 47 year-old, diagnosed in May
Hi Terrilynn,
To say this sounds traumatic would be an understatement. My heart goes out to you and your boyfriend.
I'm going to ask the basic questions that most everyone on this forum would ask and I'm sure some of the other folks on the forum that have been through very rough rides will chime in.
Are you working with an oncologist that specializes in multiple myeloma? Where are you located?
Were any of the newer multiple myeloma drugs such as pomalyst, kyprolis and/or a trial discussed?
Is he on a waiting list for an allo transplant, as opposed to auto transplant ? (I'm guessing that is why you are on a waiting list)?
There are some folks on this forum that have been on death's door and have come back, so there is always hope.
To say this sounds traumatic would be an understatement. My heart goes out to you and your boyfriend.
I'm going to ask the basic questions that most everyone on this forum would ask and I'm sure some of the other folks on the forum that have been through very rough rides will chime in.
Are you working with an oncologist that specializes in multiple myeloma? Where are you located?
Were any of the newer multiple myeloma drugs such as pomalyst, kyprolis and/or a trial discussed?
Is he on a waiting list for an allo transplant, as opposed to auto transplant ? (I'm guessing that is why you are on a waiting list)?
There are some folks on this forum that have been on death's door and have come back, so there is always hope.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: 47 year-old, diagnosed in May
We are in Ontario Canada Closer to Manitoba. We do have a multiple myeloma specialist but there are a lot of politics going on between the two provinces. His specialist is in Manitoba therefore Ontario doesn't get too excited about paying for care. He is getting his own stem cells that were harvested in October however because the disease progressed so much they couldn't do the transplant. However at this point he is only approved for 14 more days of chemo and can not live without chemo as the tumours come on as soon as he stops so they are going to do the transplant although conditions are not perfect. They did advise they hope the transplant slows down the progression however do not think remission will be a possibility.
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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: 47 year-old, diagnosed in May
That being said we still have hope. In May they said he would never use his arm again. And he did. In July they said he would never walk unassisted. And he did. I do believe that the power of the spirit does at times overcome obstacles. However he is getting tired. We are scared. When is enough enough. I read the forums and see so many remission stories. I pray that we will surprise all and be able to Post our remission story.
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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: 47 year-old, diagnosed in May
Hi Terrilynn, I can understand how discouraging and scary this is for you, to be dealing with such aggressive multiple myeloma. juST on the topic of inter provincial health care, I also understand that it is difficult sometimes to work between provinces. I have actually heard of people who moved to a different province in order to get a myeloma drug that wasn't yet approved in their home province (this was a few years ago when Revlimid was being introduced).
I live in Alberta, but do know that in Winnipeg there are myeloma specialists, and also that in Toronto at the Princess Margaret Hospital there is a centre for treatment and research. I went to a myeloma patient conference in Winnipeg in 2012 that was put on by the support group there and also Myeloma Canada. I think it's possible you may have to travel to get treatment if you are not getting what you need in your centre. I suggest that you phone Myeloma Canada and ask them for advice (they have a website). I think that you should be able to get some additional help for your situation. Even if the approved drugs are not working, there may be an opportunity to get other drugs on a compassionate basis. I hope that helps, and best wishes to you. I hope you can get past this crisis, because as other posters have pointed out, one can be very ill with myeloma and still make a recovery.
The Beacon is a really good resource for posting questions too, and people reading it do have a wealth of experience. There are some myeloma specialists who also post advice on the Beacon.
I live in Alberta, but do know that in Winnipeg there are myeloma specialists, and also that in Toronto at the Princess Margaret Hospital there is a centre for treatment and research. I went to a myeloma patient conference in Winnipeg in 2012 that was put on by the support group there and also Myeloma Canada. I think it's possible you may have to travel to get treatment if you are not getting what you need in your centre. I suggest that you phone Myeloma Canada and ask them for advice (they have a website). I think that you should be able to get some additional help for your situation. Even if the approved drugs are not working, there may be an opportunity to get other drugs on a compassionate basis. I hope that helps, and best wishes to you. I hope you can get past this crisis, because as other posters have pointed out, one can be very ill with myeloma and still make a recovery.
The Beacon is a really good resource for posting questions too, and people reading it do have a wealth of experience. There are some myeloma specialists who also post advice on the Beacon.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: 47 year-old, diagnosed in May
Toronto is a 3 hour drive then5 hour flight away from us. He refuses to even consider going any where other then Winnipeg so we have access to our family. I personally don't care where we go if it means we come home together however when he spent 34 days in Winnipeg. Half of which I was alone he said then that he won't go anywhere he can't get someone to me quickly. Family support is a big thing in recovery and he wants to stay close. The reason they are stopping the chemo is because it is no longer working as well. He can not stop for even a week. Must have a form of it daily or tumours pop up everywhere. With the Costs involved unless there is a plan beyond chemo it's very hard to get approved. This is why they have to do the transplant now. He is getting weaker every day. Even talking tires him. Very nauseated and has trouble eating. Today his bladder control started to go. Seems we don't even have time to explore options. Right now we sit by phone and wait for call to go to transplant. Doctors expect it to be within a week.
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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: 47 year-old, diagnosed in May
Hello,
Best wishes to your boyfriend and to you, and I hope to hear of his remission story sometime in the near future.
Alex
Best wishes to your boyfriend and to you, and I hope to hear of his remission story sometime in the near future.
Alex
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: 47 year-old, diagnosed in May
Yes, Terrilynn, I hope that your boyfriend responds well to the transplant and that also you get the financial aspects of the treatments sorted out. As well as Myeloma Canada, the cancer centre itself probably has a department to help patients with their financial concerns. It sounds quite complicated, but you do have his loving family nearby which is always a great help. Wishing you all the best. Take care of yourself too and when you can, let us know how your boyfriend is doing.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: 47 year-old, diagnosed in May
Hi Terrilyn,
It is a gut wrenching situation you find yourself in, my heart goes out to you. I was in a situation where my myeloma was not responding to treatment & had been told there was no more treatment available - that was nearly 3 years ago
. I had a mini allo and am now in remission and at the time the specialists didn't know if it would work.
It is amazing what the human body can go through and then recover. I had a BAD reaction to melphalan ( kidney failure, lungs collapsed, heart had a hissy fit and something similar to 3rd degree burns down my GI tract) which was used for my auto. I was not in a good place. I could not lift my leg up on to the hospital bed I was so weak. My husband would visit to help me shower, I would then sleep for ~ 1 - 2 hours because I was so exhausted. Slowly I regained my strength but my myeloma was still active. I was told at that stage that an allo was my only hope.
All the best for you & your boyfriend,
Libby
It is a gut wrenching situation you find yourself in, my heart goes out to you. I was in a situation where my myeloma was not responding to treatment & had been told there was no more treatment available - that was nearly 3 years ago
. I had a mini allo and am now in remission and at the time the specialists didn't know if it would work. It is amazing what the human body can go through and then recover. I had a BAD reaction to melphalan ( kidney failure, lungs collapsed, heart had a hissy fit and something similar to 3rd degree burns down my GI tract) which was used for my auto. I was not in a good place. I could not lift my leg up on to the hospital bed I was so weak. My husband would visit to help me shower, I would then sleep for ~ 1 - 2 hours because I was so exhausted. Slowly I regained my strength but my myeloma was still active. I was told at that stage that an allo was my only hope.
All the best for you & your boyfriend,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
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