I haven't written in a while but have reached a point of uncertainty that I'm hoping someone can help with. My husband has been dealing with multiple myeloma for five years. He relapsed in November after a year long remission following tandem stem cell transplants. His monoclonal protein level was .75 g/dL and he was placed on 15mg of Revlimid. After one cycle his protein level was 1.46 g/dL and he started Kyprolis in January. His proteins dropped to 1.19 g/dL after two cycles but after three have jumped up to 1.48. We received this news yesterday on his fiftieth birthday.
I guess what I am wondering is what our next step should be. We have already begun the process of finding a match for an allo transplant and his sister and one brother match. We would like to hold off until fall and are not even sure that is the right treatment plan.
I am also curious as to what fellow readers think about combinations of drugs? If he didn't respond to Revlimid before, is it worth trying in conjunction with Kyprolis? Velcade is off the table due to severe neuropathy. I have never understood why his oncologist does not prescribe Dex along with the chemo. I've asked but not gotten a memorable answer. He sees his doctor on May 1st. I plan to ask all of these questions and others from your responses. Thank you, in advance.
Beth
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Re: Treatment Options and Questions
Hi Beth,
I cant comment on appropriate drug treatment plans simply because I went the allo transplant route. I and my family are so happy with the decision to have the allo which was 2 years ago today. When I had my allo my paraprotein level was 16 g/L (1.6 g/dL) which was considered high. However, the allo worked and I have been in remission for over a year now.
All the best for you and your family
Libby
I cant comment on appropriate drug treatment plans simply because I went the allo transplant route. I and my family are so happy with the decision to have the allo which was 2 years ago today. When I had my allo my paraprotein level was 16 g/L (1.6 g/dL) which was considered high. However, the allo worked and I have been in remission for over a year now.
All the best for you and your family
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
Re: Treatment Options and Questions
Libby,
Thank you for the encouraging response. We have both been so discouraged with Bryan's short response to the tandem transplants. We aren't sure that the outcome from an allo would outweigh the risks and amount of time he would be out of circulation.
Do you mind me asking what treatments you had prior to your allo? Did you try an auto transplant first or any of the available novel agents? If so, what kind of responses did you have?
Thanks, Beth
Thank you for the encouraging response. We have both been so discouraged with Bryan's short response to the tandem transplants. We aren't sure that the outcome from an allo would outweigh the risks and amount of time he would be out of circulation.
Do you mind me asking what treatments you had prior to your allo? Did you try an auto transplant first or any of the available novel agents? If so, what kind of responses did you have?
Thanks, Beth
Re: Treatment Options and Questions
Hi Beth,
The reason I had an allo was coz at the time there were no other treatment options. My treatment was as follows:
Vincristine, Adriomycin & the good old dex. 4 cycles of this reduced my paraprotein from 67 g/L to 29 g/L. (the last cycle it decreased from 33 to 29)
While waiting for next treatment (1 month) paraprotein increased to 43 g/L
Thalidomide and dex for 9 months. Paraprotein dropped initially then started climbing again so my thalidomide dose was doubled. After the 9 months my level was 20 g/L.
~2 months off the thalidomide it increased to 24.
I then had an auto transplant (melphalan) which reduced my paraprotein to 20. Within 5 months it was back up to 29 g/L. It took me a while to recover from the auto as I had kidney failure, my lungs collapsed, my heart had a hissy fit and my GI tract apparently had something that looked like third degree burns down it.
Velcade, cyclophosphamide and dex were next. 3 cycles reduced it from 29 to 16g/L. The 4th cycle did nothing.
Allo transplant was next. From 16 it started growing again to 20 g/L then tah dah down to 0 after I experienced both acute and chronic GVHD.
The reason I had an allo was coz at the time there were no other treatment options. My treatment was as follows:
Vincristine, Adriomycin & the good old dex. 4 cycles of this reduced my paraprotein from 67 g/L to 29 g/L. (the last cycle it decreased from 33 to 29)
While waiting for next treatment (1 month) paraprotein increased to 43 g/L
Thalidomide and dex for 9 months. Paraprotein dropped initially then started climbing again so my thalidomide dose was doubled. After the 9 months my level was 20 g/L.
~2 months off the thalidomide it increased to 24.
I then had an auto transplant (melphalan) which reduced my paraprotein to 20. Within 5 months it was back up to 29 g/L. It took me a while to recover from the auto as I had kidney failure, my lungs collapsed, my heart had a hissy fit and my GI tract apparently had something that looked like third degree burns down it.
Velcade, cyclophosphamide and dex were next. 3 cycles reduced it from 29 to 16g/L. The 4th cycle did nothing.
Allo transplant was next. From 16 it started growing again to 20 g/L then tah dah down to 0 after I experienced both acute and chronic GVHD.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Treatment Options and Questions
Hi Libby,
Wow, what a road you've been down. Thank you for sharing. Bryan has been down a long road as well, although he had complete responses, albeit short, to 17 months of Revlimid/Dex and then his auto transplants. I hope your remission a continues for many, many years. We should find out Wednesday what's next for us. Your success with allo transplant gives me renewed hope that we can achieve positive results as well!
Thanks again, Beth
Wow, what a road you've been down. Thank you for sharing. Bryan has been down a long road as well, although he had complete responses, albeit short, to 17 months of Revlimid/Dex and then his auto transplants. I hope your remission a continues for many, many years. We should find out Wednesday what's next for us. Your success with allo transplant gives me renewed hope that we can achieve positive results as well!
Thanks again, Beth
Re: Treatment Options and Questions
Hi Libby,
You had mentioned in another thread that you would be 2 years post allo at the end of the month. Congratulations!!! That is great. I wanted to echo BethW's comments that you are indeed an inspirational patient. All the best wishes being sent your way for a very long remission. If any patient deserves to be cured it is you.
Mark
You had mentioned in another thread that you would be 2 years post allo at the end of the month. Congratulations!!! That is great. I wanted to echo BethW's comments that you are indeed an inspirational patient. All the best wishes being sent your way for a very long remission. If any patient deserves to be cured it is you.
Mark
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Mark
Re: Treatment Options and Questions
Hi Mark,
Thanks for the congratulations - it was 2 years on Monday. I certainly celebrated the day. Congratulations to you too! Aren't you 2 years post allo soon too?
I am now eligible for another clinic the "late effects clinic", apparently you have to be 2 years post transplant and still in remission. This clinic focusses on all the other problems you may have had since treatment (there have been a few
) and will try and address the issues to increase QOL. Just the fact that I am eligible has increased my QOL!
All the best,
Libby
Thanks for the congratulations - it was 2 years on Monday. I certainly celebrated the day. Congratulations to you too! Aren't you 2 years post allo soon too?
I am now eligible for another clinic the "late effects clinic", apparently you have to be 2 years post transplant and still in remission. This clinic focusses on all the other problems you may have had since treatment (there have been a few
) and will try and address the issues to increase QOL. Just the fact that I am eligible has increased my QOL!All the best,
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
Re: Treatment Options and Questions
Hi Libby,
I will be 2 years post allo later this month. It is a great feeling. It is really starting to hit me that my team (my Doctor, donor, and all the great personnel at the Hospital) and I may have beaten this disease. I could never thank all of them enough.
If you do not mind my asking, have you had a chance to interact with your donor? I made contact with mine last June. That is really special to meet such a giving person. Definitely renews your faith in people knowing there are people like my donor in the world.
Mark
I will be 2 years post allo later this month. It is a great feeling. It is really starting to hit me that my team (my Doctor, donor, and all the great personnel at the Hospital) and I may have beaten this disease. I could never thank all of them enough.
If you do not mind my asking, have you had a chance to interact with your donor? I made contact with mine last June. That is really special to meet such a giving person. Definitely renews your faith in people knowing there are people like my donor in the world.
Mark
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Mark
Re: Treatment Options and Questions
Hi Mark,
I haven't made contact with my donor yet but am planning to. I have asked my transplant coordinator how to go about it - I need to write a letter first and then we will see what happens. If I ever come over to the states hopefully I will get to meet her. Incidentally I had two potential donors; both women, both B- and both from Washington. It is wonderful knowing that there are people willing to donate stem cells.
All the best for your 2 year anniversary later this month.
Libby
I haven't made contact with my donor yet but am planning to. I have asked my transplant coordinator how to go about it - I need to write a letter first and then we will see what happens. If I ever come over to the states hopefully I will get to meet her. Incidentally I had two potential donors; both women, both B- and both from Washington. It is wonderful knowing that there are people willing to donate stem cells.
All the best for your 2 year anniversary later this month.
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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