Dear Hopeful,
Fighting with you and thinking of you everyday. Keep going!
Forums
Re: Hopeful1's tandem stem cell transplants
Hi hopeful1,
Hoping everything turns around soon. Perhaps you could check if there a possibility of getting your pills in an IV. I had nausea and didn't keep them down, so changed I to an IV form, and that worked well. I was there 23 days, so hopefully you will be out soon. I had 6 bags of potassium every night I was there, and I still struggle to keep it in the normal range.
Sorry they changed the policy for Chick-fil-A. That was a nice treat when I was there.
Keep up posted, and we will keep praying for you here in Virginia.
Hoping everything turns around soon. Perhaps you could check if there a possibility of getting your pills in an IV. I had nausea and didn't keep them down, so changed I to an IV form, and that worked well. I was there 23 days, so hopefully you will be out soon. I had 6 bags of potassium every night I was there, and I still struggle to keep it in the normal range.
Sorry they changed the policy for Chick-fil-A. That was a nice treat when I was there.
Keep up posted, and we will keep praying for you here in Virginia.
-
Margie C
Re: Hopeful1's tandem stem cell transplants
Hi Hopeful,
I was very glad to see your update. I know that things have been difficult for you at times during the transplant, but please don't be discouraged. The transplant experience varies a lot from person to person, but what you've gone through is by no means unusual. Things will get better, and it won't be long until you're out of hospital.
Good luck!
I was very glad to see your update. I know that things have been difficult for you at times during the transplant, but please don't be discouraged. The transplant experience varies a lot from person to person, but what you've gone through is by no means unusual. Things will get better, and it won't be long until you're out of hospital.
Good luck!
Re: Hopeful1's tandem stem cell transplants
Hopeful1 -
It sounds like you're having a bit of a rough go of it, but hopefully nothing too serious and you'll round the bend soon. Stay strong and these days will be distant memories soon. The community is behind you.
It sounds like you're having a bit of a rough go of it, but hopefully nothing too serious and you'll round the bend soon. Stay strong and these days will be distant memories soon. The community is behind you.
-
Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Hopeful1's tandem stem cell transplants
Hi Hopeful1,
It's already more than 2 weeks since your last post. Hope things are becoming better and you're OK, just bluesy.
All the best and warm wishes to you.
It's already more than 2 weeks since your last post. Hope things are becoming better and you're OK, just bluesy.
All the best and warm wishes to you.
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borber - Name: borber
- Who do you know with myeloma?: me
- When were you/they diagnosed?: January, 2017
- Age at diagnosis: 60
Re: Hopeful1's tandem stem cell transplants
Hello!
Thank you all for lending an ear and the well wishes. It was 30 days on September 17 since my autologous stem cell transplant. Sorry for the delay checking in. Somehow the days seemed busy. Each day I feel better, GI issues have settled down (I know what I can't eat). Have a good appetite, a bit low on energy, but not sleeping great (either).
I am gratefully HOME. I was released from hospital on September 5. Moved into a Residence Inn (hospital requires you to stay within 10 miles of it) and stayed there until September 20. There is no place like home. I'm back at Virginia Beach
I won't see the doctor, unless there's an issue, until October 16, the oh-so-fun biopsy "restage". Hoping the term "tandem" will leave my care with the transplant results. A transplant, it's no vacation.
Adhering to all the "rules" is difficult. No gardening, no cleaning, no eating out. I'm thankful and I am following the instructions. I do not understand why with the mask, latex gloves and garden gloves, why a bit of weeding would be a big issue. Ugh
The support from the members here is so appreciated. Cheers for all to good health and kicking myeloma's a--.
Thank you all for lending an ear and the well wishes. It was 30 days on September 17 since my autologous stem cell transplant. Sorry for the delay checking in. Somehow the days seemed busy. Each day I feel better, GI issues have settled down (I know what I can't eat). Have a good appetite, a bit low on energy, but not sleeping great (either).
I am gratefully HOME. I was released from hospital on September 5. Moved into a Residence Inn (hospital requires you to stay within 10 miles of it) and stayed there until September 20. There is no place like home. I'm back at Virginia Beach
I won't see the doctor, unless there's an issue, until October 16, the oh-so-fun biopsy "restage". Hoping the term "tandem" will leave my care with the transplant results. A transplant, it's no vacation. Adhering to all the "rules" is difficult. No gardening, no cleaning, no eating out. I'm thankful and I am following the instructions. I do not understand why with the mask, latex gloves and garden gloves, why a bit of weeding would be a big issue. Ugh
The support from the members here is so appreciated. Cheers for all to good health and kicking myeloma's a--.
-
Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Hopeful1's tandem stem cell transplants
Good day.
I am 71 days past my allo transplant, which took place August 17. The overall process wasn't too bad. I am hoping my 60 day biopsies wash the need for a second transplant. The second transplant originally was suggested by the doctor to take place at 80 days depending on the results of the first. Although I stated the first go around with a transplant wasn't too bad, I am not quick to the desire of tackling another transplant! I don't have a consult on the 60 days report until Monday. The results hit my patient portal and I have been trying to translate them for the last 2 days! (Trying is the key word). Anxious to say the least. Any help in translating these results would be so appreciated.
Albumin 3.9
Creat Clearance 53 mL/min/1.73m2 (low)
IgA 55 mg/DL (low)
IgG 676 (low)
IgM 29 (low)
WBC 6.5 10e/DL
RBC 3.44 10/E 12 (low)
Hemoglobin 11.2 g/gl (low)
MCV 101.5 FL (high)
MCH 32.6 pg high
MPV 9.8
LYM 1.2 10e9/L (low)
EOS 0.5 10e/9/L (high)
Protein, SPEP 6.2 g/gl (low)
Free Kappa Lt chains 7.20 mg/l
Free Kappa Lt chains, Ur 15.10
Free Lambda Lt chains 6.10
Free Lambda Lt chains, Ur 0.51
Kappa lambda ratio 1.8
Kappa lambda ratio, Ur 29.61 (high)
I am 71 days past my allo transplant, which took place August 17. The overall process wasn't too bad. I am hoping my 60 day biopsies wash the need for a second transplant. The second transplant originally was suggested by the doctor to take place at 80 days depending on the results of the first. Although I stated the first go around with a transplant wasn't too bad, I am not quick to the desire of tackling another transplant! I don't have a consult on the 60 days report until Monday. The results hit my patient portal and I have been trying to translate them for the last 2 days! (Trying is the key word). Anxious to say the least. Any help in translating these results would be so appreciated.
Albumin 3.9
Creat Clearance 53 mL/min/1.73m2 (low)
IgA 55 mg/DL (low)
IgG 676 (low)
IgM 29 (low)
WBC 6.5 10e/DL
RBC 3.44 10/E 12 (low)
Hemoglobin 11.2 g/gl (low)
MCV 101.5 FL (high)
MCH 32.6 pg high
MPV 9.8
LYM 1.2 10e9/L (low)
EOS 0.5 10e/9/L (high)
Protein, SPEP 6.2 g/gl (low)
Free Kappa Lt chains 7.20 mg/l
Free Kappa Lt chains, Ur 15.10
Free Lambda Lt chains 6.10
Free Lambda Lt chains, Ur 0.51
Kappa lambda ratio 1.8
Kappa lambda ratio, Ur 29.61 (high)
-
Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Hopeful1's tandem stem cell transplants
Hello,
I am celebrating, as 70 some days out from my allow transplant, 60 day biopsies and blood work up, my results show no myeloma, clear, clean! Complete remission! Happy feet!!
Just as I receive and process this great news, it is suggested I, as soon as possible, sign onto have a second .transplant. I am high risk for relapse, deletion of 13, 14, tp53. My doctor says it should give me 7 years disease free with maintenance Revlimid.
I have been unable to find much info on back to back allo transplants, and am not sure the second transplant will really be worth it.
I am celebrating, as 70 some days out from my allow transplant, 60 day biopsies and blood work up, my results show no myeloma, clear, clean! Complete remission! Happy feet!!
Just as I receive and process this great news, it is suggested I, as soon as possible, sign onto have a second .transplant. I am high risk for relapse, deletion of 13, 14, tp53. My doctor says it should give me 7 years disease free with maintenance Revlimid.
I have been unable to find much info on back to back allo transplants, and am not sure the second transplant will really be worth it.
-
Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Hopeful1's tandem stem cell transplants
I notice a number of people starting some form of maintenance very close after completing a stem cell transplant. You mention you are high risk with various degrees of confirmation from a genetic perspective.
I am only at Day +49 and it will be a while before I see my haematologist (I think they avoid the patients whilst they are recovering from the stem cell transplant, as they know how tough it is? – though there is a number to ring - a specialist nurse if there are any problems). They are not keen on maintenance here, not sure if that is due to cost or budgets, e.g. they do not do FISH tests, as they are considered too expensive.
My haematologist says he is not keen on maintenance in that he is of the opinion that the myeloma will eventually fight back harder. He is old and grey with 40 years experience and, whilst I try to listen to him, I do challenge him on occasion, as he can have eccentric views that might differ from what I have read on the Internet.
I have read of people who have taken over six months for their M-spike to reduce to an acceptable level after transplant. Also I have read that it can take three months given the half-life of paraprotein to fully leave the body, e.g. before the residual level can be fully determined.
I am only at Day +49 in terms of recovering from the stem cell transplant and I do not have a clue in terms of my genetics. My M-spike at Day +21 was 2 g/l (0.2 g/dl). I get my next reading in January 2018 – Day +115 (Christmas gets in the way). It could have gone up or down by then and it will be beyond the half-life of any residual paraprotein (e.g., what might be recorded at that point in terms of what my body will be producing).
I guess I will want be careful not to undertake a new treatment regimen after transplant as I found the induction phase using a thalidomide base very debilitating. These myeloma therapies can have different names but similar foundations and side effects.
Good luck with your own case, I find that you are very brave to undertake a second transplant so soon, and I gain the impression that there are specific reasons for you following the path as laid out (e.g. genetics).
In terms of my own case, I would not undertake a second transplant unless it was absolutely needed. If my paraprotein (M-spike) starts increasing to a level that needs attention, then I think I will try some form of medication (e.g. maintenance) and save the second transplant for when I might be at death's door or at least 24 months beyond the first. In terms of the maintenance phase, I will be wanting an assurance it is absolutely required at that point in time.
These are very complex decisions and, as others have said, not easy. I guess best to be well informed as possible before making decisions.
Your thread mentions auto and allo transplants?
Good luck with your next steps.
I am only at Day +49 and it will be a while before I see my haematologist (I think they avoid the patients whilst they are recovering from the stem cell transplant, as they know how tough it is? – though there is a number to ring - a specialist nurse if there are any problems). They are not keen on maintenance here, not sure if that is due to cost or budgets, e.g. they do not do FISH tests, as they are considered too expensive.
My haematologist says he is not keen on maintenance in that he is of the opinion that the myeloma will eventually fight back harder. He is old and grey with 40 years experience and, whilst I try to listen to him, I do challenge him on occasion, as he can have eccentric views that might differ from what I have read on the Internet.
I have read of people who have taken over six months for their M-spike to reduce to an acceptable level after transplant. Also I have read that it can take three months given the half-life of paraprotein to fully leave the body, e.g. before the residual level can be fully determined.
I am only at Day +49 in terms of recovering from the stem cell transplant and I do not have a clue in terms of my genetics. My M-spike at Day +21 was 2 g/l (0.2 g/dl). I get my next reading in January 2018 – Day +115 (Christmas gets in the way). It could have gone up or down by then and it will be beyond the half-life of any residual paraprotein (e.g., what might be recorded at that point in terms of what my body will be producing).
I guess I will want be careful not to undertake a new treatment regimen after transplant as I found the induction phase using a thalidomide base very debilitating. These myeloma therapies can have different names but similar foundations and side effects.
Good luck with your own case, I find that you are very brave to undertake a second transplant so soon, and I gain the impression that there are specific reasons for you following the path as laid out (e.g. genetics).
In terms of my own case, I would not undertake a second transplant unless it was absolutely needed. If my paraprotein (M-spike) starts increasing to a level that needs attention, then I think I will try some form of medication (e.g. maintenance) and save the second transplant for when I might be at death's door or at least 24 months beyond the first. In terms of the maintenance phase, I will be wanting an assurance it is absolutely required at that point in time.
These are very complex decisions and, as others have said, not easy. I guess best to be well informed as possible before making decisions.
Your thread mentions auto and allo transplants?
Good luck with your next steps.
-
wenlock00 - Name: Wenlock00
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 58
Re: Hopeful1's tandem stem cell transplants
Hello.
My apologies. My first transplant was an auto, and the second will be an auto too.
Yes, my doctors are pushing for the second auto transplant to take place ASAP due to the deletion of chromosomes (tp53, 13 etc). The deletion of such mark me high-risk for relapse.
The biopsies taken a few weeks ago following the auto indicate stringent remission. no cancer present. I am feeling good seventy some days out from the transplant.
Thank you for sharing your thoughts. I am told this second auto will provide me the best chance for disease-free progress.
My apologies. My first transplant was an auto, and the second will be an auto too.
Yes, my doctors are pushing for the second auto transplant to take place ASAP due to the deletion of chromosomes (tp53, 13 etc). The deletion of such mark me high-risk for relapse.
The biopsies taken a few weeks ago following the auto indicate stringent remission. no cancer present. I am feeling good seventy some days out from the transplant.
Thank you for sharing your thoughts. I am told this second auto will provide me the best chance for disease-free progress.
-
Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
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