Hi RT,
Thanks a lot for the update. Very glad to hear that you are doing so well! Keep it up!
Mike
Forums
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Inpatient autologous stem cell transplant at UC Davis
Great to hear that you've recovered so well from your transplant, RT. Do you still feel that you're seeing improvements in your strength, energy-levels, and ability to concentrate, or have things more or less leveled off, and are you close to being back to where you'd like to be?
(Sorry, I know I packed a lot of questions into that last sentence. I guess I'm just curious about where you think you are right now compared, for example, to how you were feeling pre-transplant.)
Thanks again for the updates about your transplant.
(Sorry, I know I packed a lot of questions into that last sentence. I guess I'm just curious about where you think you are right now compared, for example, to how you were feeling pre-transplant.)
Thanks again for the updates about your transplant.
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JimNY
Re: Inpatient autologous stem cell transplant at UC Davis
Hi Jim,
It's hard to compare my condition now to my pre-transplant condition. I was suffering from anemia, fatigue, and rib pain since around the fall of 2014. I went on induction treatment starting February 2015, which continued into July. Then a short break and onto pre-transplant chemo in September, then into transplant in October. So it's been a long time since I felt 'good' – both because of chemo and because of the myeloma.
I definitely expect continuing improvements over the next few months in both my energy level and digestive 'wellness'. But even at this point, I feel so much better than I have in a LONG time.
RT
It's hard to compare my condition now to my pre-transplant condition. I was suffering from anemia, fatigue, and rib pain since around the fall of 2014. I went on induction treatment starting February 2015, which continued into July. Then a short break and onto pre-transplant chemo in September, then into transplant in October. So it's been a long time since I felt 'good' – both because of chemo and because of the myeloma.
I definitely expect continuing improvements over the next few months in both my energy level and digestive 'wellness'. But even at this point, I feel so much better than I have in a LONG time.
RT
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Inpatient autologous stem cell transplant at UC Davis
RT,
You sound so much like my husband's diagnosis. He is 58, the man has never been sick a day in his life and is a burns-the-candle-at-both-ends kinda guy. He was diagnosed in December. They have him on CyBorD once a week for four months and then a stem cell transplant. He also has IgA kappa light chain myeloma with 70% plasma cells in his bone marrow. He has rib pain as well but no fractures shown on scans.
At the start, his kidneys were very much under attack by the myeloma, so he spent 4 days in the hospital to get that cleared up before starting induction treatment. He is having a hard time dealing with the fatigue. He has always been so active. I am so glad you are doing better. I am sure you will see me post here often as I will have lots of questions in the coming months as his devoted wife and caregiver.
You sound so much like my husband's diagnosis. He is 58, the man has never been sick a day in his life and is a burns-the-candle-at-both-ends kinda guy. He was diagnosed in December. They have him on CyBorD once a week for four months and then a stem cell transplant. He also has IgA kappa light chain myeloma with 70% plasma cells in his bone marrow. He has rib pain as well but no fractures shown on scans.
At the start, his kidneys were very much under attack by the myeloma, so he spent 4 days in the hospital to get that cleared up before starting induction treatment. He is having a hard time dealing with the fatigue. He has always been so active. I am so glad you are doing better. I am sure you will see me post here often as I will have lots of questions in the coming months as his devoted wife and caregiver.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Inpatient autologous stem cell transplant at UC Davis
Thanks for the update and great to hear you are doing better, RT.
It can be difficult to describe exactly how your quality of life is after a certain therapy since there are many varialbles. As an example, I spent 2 weeks in the hospital after diagnosis with 3 compression fractures, fractured ribs, fungal pneumonia, etc. I started my induction while in the hospital. By the end of my induction I had some side effects from my "double dose" of Doxil, but I did feel considerably better when I completed my induction than when I started. Reducing the percentage of myeloma in my marrow from 90% to 10% will have some very positive effects on your QOL!
Similar to what RT is saying, one point I typically make to patients about to undergo transplant (usually I am talking with allo patients with various blood cancers as opposed to myeloma patients doing autos) I do caution them about what RT mentions above:
"I definitely expect continuing improvements over the next few months in both my energy level and digestive 'wellness'. But even at this point, I feel so much better than I have in a LONG time."
I felt much better a few months after both my auto and allo, but a patient has to be careful that their immune system is back up to strength before being out with a lot of people. A bad infection can set you back. It is tough to do at times, since you want to get out and enjoy life while you are feeling so good. Sounds like RT is doing the right thing. Get out and get some regular exercise and ease back into work, etc. My experience is that a patient will get a big improvement when they get off any systematic therapy that they experience side effects from. I had a steady improvement in my QOL for 6 months after my allo and than a major improvement in the next 3 months to get me back to how I felt prior to diagnosis once I was off my immunosuppressive drug.
It can be difficult to describe exactly how your quality of life is after a certain therapy since there are many varialbles. As an example, I spent 2 weeks in the hospital after diagnosis with 3 compression fractures, fractured ribs, fungal pneumonia, etc. I started my induction while in the hospital. By the end of my induction I had some side effects from my "double dose" of Doxil, but I did feel considerably better when I completed my induction than when I started. Reducing the percentage of myeloma in my marrow from 90% to 10% will have some very positive effects on your QOL!
Similar to what RT is saying, one point I typically make to patients about to undergo transplant (usually I am talking with allo patients with various blood cancers as opposed to myeloma patients doing autos) I do caution them about what RT mentions above:
"I definitely expect continuing improvements over the next few months in both my energy level and digestive 'wellness'. But even at this point, I feel so much better than I have in a LONG time."
I felt much better a few months after both my auto and allo, but a patient has to be careful that their immune system is back up to strength before being out with a lot of people. A bad infection can set you back. It is tough to do at times, since you want to get out and enjoy life while you are feeling so good. Sounds like RT is doing the right thing. Get out and get some regular exercise and ease back into work, etc. My experience is that a patient will get a big improvement when they get off any systematic therapy that they experience side effects from. I had a steady improvement in my QOL for 6 months after my allo and than a major improvement in the next 3 months to get me back to how I felt prior to diagnosis once I was off my immunosuppressive drug.
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Mark11
Re: Inpatient autologous stem cell transplant at UC Davis
RT, any updates? How are you doing?
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
Re: Inpatient autologous stem cell transplant at UC Davis
Hello everyone,
I am now 5 months post transplant, and am happy to say I am doing great. I managed to avoid viruses and bacterial infections after the transplant. I quit my antibiotics about 2 months post transplant, against the advice of my doctors. My gut couldn't take it anymore. My gut improved dramatically as soon as I stopped them. I have been going whole-hog on integrative medicine during my recovery period. I'm sure that's helped.
My oncologist says I'm going really great. White blood cells are now approaching normal, and hemoglobin has been normal for quite awhile. M-spike is a bit fat 0.0! IgA is normal! Kappa light chains are normal. Basically, the transplant worked pretty darn well in my case. I feel very grateful that it worked as well as it did. While there's no guarantees for the future, for now I have my life back, and am no longer consumed with myeloma.
The main thing I'm still dealing with is fatigue. I still need a lot of rest, and tend to be very tired in the evenings. But I am so happy to have my life back. My level of energy improves each month.
Started Revlimid maintenance (5 mg - 21 days on, 7 days off) about 10 days ago. Very low dose - hope I can keep it that way. Both my oncologist and Integrative MD thought maintenance was a good idea. So far there are very few side effects on this low dose.
Best wishes to all,
RT
I am now 5 months post transplant, and am happy to say I am doing great. I managed to avoid viruses and bacterial infections after the transplant. I quit my antibiotics about 2 months post transplant, against the advice of my doctors. My gut couldn't take it anymore. My gut improved dramatically as soon as I stopped them. I have been going whole-hog on integrative medicine during my recovery period. I'm sure that's helped.
My oncologist says I'm going really great. White blood cells are now approaching normal, and hemoglobin has been normal for quite awhile. M-spike is a bit fat 0.0! IgA is normal! Kappa light chains are normal. Basically, the transplant worked pretty darn well in my case. I feel very grateful that it worked as well as it did. While there's no guarantees for the future, for now I have my life back, and am no longer consumed with myeloma.
The main thing I'm still dealing with is fatigue. I still need a lot of rest, and tend to be very tired in the evenings. But I am so happy to have my life back. My level of energy improves each month.
Started Revlimid maintenance (5 mg - 21 days on, 7 days off) about 10 days ago. Very low dose - hope I can keep it that way. Both my oncologist and Integrative MD thought maintenance was a good idea. So far there are very few side effects on this low dose.
Best wishes to all,
RT
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Inpatient autologous stem cell transplant at UC Davis
Thank you very much for the update, RT. I am very very gratified to hear that you are in a good place right now, and I hope it continues for a long long time. Congratulations on the complete response.
The majority of doctors (I think) are prescribing maintenance at this time. I see that your dosage level, at 5 mg, is at the low end. I hope this is the correct balance in terms of a long progression-free survivaland low side effects.
When you are up to it, I (and am guessing others) would be very interested in hearing the integrative approaches that you are taking.
Good luck to you.
The majority of doctors (I think) are prescribing maintenance at this time. I see that your dosage level, at 5 mg, is at the low end. I hope this is the correct balance in terms of a long progression-free survivaland low side effects.
When you are up to it, I (and am guessing others) would be very interested in hearing the integrative approaches that you are taking.
Good luck to you.
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JPC - Name: JPC
48 posts
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