Hi,
My brother is 49 and has t(4:14) multiple myeloma. He just finished having his autologous stem cell transplant at Vancouver General Hospital in Canada. I feel he got top notch care there. It went well with a few complications. When he was neutropenic, he did have neutropenic enterocolitis and engraftment syndrome. But today he is at Day 21. On Day 18, he had his Hickman line taken out and was able to go home. He had a lot of trouble eating and has just started eating yesterday, Day 20.
I am wondering if there is anyone in the community who has the same procedure as my brother. First he had 4 rounds of CyBorD [cyclophosphamide, Velcade, dexamethasone]. Then he had melphalan before his stem cell transplant.
Does anyone have some words of encouragement for him?
He has been told that he will be fine for 2-3 years. He is depressed and frightened and could use some advice and hopeful words from anyone that has the same condition he has who has done well.
Thanks,
Suzanne
Forums
Re: Brother just had his SCT - can someone encourage him?
Hi Suzanne!
I've been through the same treatment as your brother. Four cycles of induction VCD, autologous stem cell transplant in March 2014. Started work in May. After day 100, I started two rounds of consolidation therapy VRD and then radiation therapy. It took a year from start to finish.
I'm in complete remission and feel great. No side effects remaining. During the ASCT I had some bad days, but I'm glad I chose to go through that treatment. I'm sure that your brother will feel better when he gets stronger!
I wish you the best.
Mattias from Sweden
I've been through the same treatment as your brother. Four cycles of induction VCD, autologous stem cell transplant in March 2014. Started work in May. After day 100, I started two rounds of consolidation therapy VRD and then radiation therapy. It took a year from start to finish.
I'm in complete remission and feel great. No side effects remaining. During the ASCT I had some bad days, but I'm glad I chose to go through that treatment. I'm sure that your brother will feel better when he gets stronger!
I wish you the best.
Mattias from Sweden
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: Brother just had his SCT - can someone encourage him?
Hi there,
Tell him to hang in there! I am on the same run up at with this bloody illness and do my SCT in February in Brisbane Australia.
In my mind, I have already decided that 2-3 years just means another bloody couple of really sh--ty months, and then another 2-3 years.
We ski in Canada and I hope to see you on the slopes! Or at least at the bar!
Cheers
Sharon
Let me know how you go. I could use the heads up.
Tell him to hang in there! I am on the same run up at with this bloody illness and do my SCT in February in Brisbane Australia.
In my mind, I have already decided that 2-3 years just means another bloody couple of really sh--ty months, and then another 2-3 years.
We ski in Canada and I hope to see you on the slopes! Or at least at the bar!
Cheers
Sharon
Let me know how you go. I could use the heads up.
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Sharon01 - Name: Sharon
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 48
Re: Brother just had his SCT - can someone encourage him?
Suzanne, My tale is the same as your brother's. I had five months of CyBorD, then melphalan and auto SCT. I went home at Day 19, again the same thing. A nurse told me that many patients returning for the Day 100 check up have only recently starting feeling good again.
For the first month plus I was not myself. No stamina or strength. After that, my white count looked good and I stopped worrying about germs. I attended a class reunion and showed everyone my shaved head. But there is no substitute for time and hemoglobin! By that, I mean that I continued to improve and in another month or two was back to where I was before I got multiple myeloma. The hair is back, too, but not the weight I lost, so I am lookin good, not that I care at my age. Both the chemo and the transplant: definitely worth it, though good to have behind me.
Mister Dana
For the first month plus I was not myself. No stamina or strength. After that, my white count looked good and I stopped worrying about germs. I attended a class reunion and showed everyone my shaved head. But there is no substitute for time and hemoglobin! By that, I mean that I continued to improve and in another month or two was back to where I was before I got multiple myeloma. The hair is back, too, but not the weight I lost, so I am lookin good, not that I care at my age. Both the chemo and the transplant: definitely worth it, though good to have behind me.
Mister Dana
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Brother just had his SCT - can someone encourage him?
Thanks everyone. These stories from the community are so very helpful.
Did any of you who have posted have the t(4:14) chromosomal abnormality?
Please keep these stories coming. I will read them to my brother. His eyes hurt so he cannot watch TV or look at a computer screen due to photophobia (does any one else have this, and if so, does it go away?).
Thanks so dearly to all of you and God bless you.
Did any of you who have posted have the t(4:14) chromosomal abnormality?
Please keep these stories coming. I will read them to my brother. His eyes hurt so he cannot watch TV or look at a computer screen due to photophobia (does any one else have this, and if so, does it go away?).
Thanks so dearly to all of you and God bless you.
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SuzMal
Re: Brother just had his SCT - can someone encourage him?
Nope, I had t(11,14), not t(4,14). But at this point it wouldn't matter, would it, because whatever it was has just been blasted away by high-dose melphalan.
I think your condition after the transplant would be more dependent on the output of your transplanted stem cells, any infections you've had, the presence or absence of other conditions like kidney trouble, and how well you can tolerate toxic stuff.
I think your condition after the transplant would be more dependent on the output of your transplanted stem cells, any infections you've had, the presence or absence of other conditions like kidney trouble, and how well you can tolerate toxic stuff.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Brother just had his SCT - can someone encourage him?
Hi SuzMal, I live in Alberta, and although our health care systems are similar, they might not be exactly the same. I have heard that the B.C. Cancer Centre and the Krall Transplant Center are nice facilities.
I don't have any chomosomal deletions either, or at least did not have any at my initial diagnosis. I think that it is possible that your doctors may recommend 'maintenance' treatment, i.e., a low dose of Revlimid, as a follow up to your transplant. It's something you could discuss with the medical team.
Hope all goes well and that you have a nice holiday time too.
I don't have any chomosomal deletions either, or at least did not have any at my initial diagnosis. I think that it is possible that your doctors may recommend 'maintenance' treatment, i.e., a low dose of Revlimid, as a follow up to your transplant. It's something you could discuss with the medical team.
Hope all goes well and that you have a nice holiday time too.
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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: Brother just had his SCT - can someone encourage him?
Hi SuzMal,
I had my stem cell transplant at Moffitt in Tampa, FL starting November 1, 2014, and got my cells back on November 3. I am +70 something days post transplant. Tell your brother it gets better. I am still fatigued. I run out of energy quickly. My transplant went well, I was released on Day 16 for outpatient. Diarrhea was and still is my biggest issue. Even still. Can't seem to regulate.
I had chromosome 17p deletion. They tell me it's a nasty type of myeloma, very aggressive. It became that way. I did two rounds of DCEP, which were 96 hours each time of continuous infusion of chemo. It worked, brought my numbers and results down so I could get the transplant. I had lesions all over my spine and limbs, tumor in my lung, was facing spinal compression that radiation relieved and saved me from paralysis. I was on a fast , slippery slope at that time.
Yesterday the transplant doctor phoned and said I am lesion and tumor free with no signs of myeloma anywhere in my system! If you want something to encourage your brother, tell him my story. Hope it works out exactly the same for him and every other one here and everywhere that has a transplant. The reality is I know it will want to rear it's head again. They say you start feeling better after Day 100. I am looking forward to that.
Take each day as it comes.
RayOp
I had my stem cell transplant at Moffitt in Tampa, FL starting November 1, 2014, and got my cells back on November 3. I am +70 something days post transplant. Tell your brother it gets better. I am still fatigued. I run out of energy quickly. My transplant went well, I was released on Day 16 for outpatient. Diarrhea was and still is my biggest issue. Even still. Can't seem to regulate.
I had chromosome 17p deletion. They tell me it's a nasty type of myeloma, very aggressive. It became that way. I did two rounds of DCEP, which were 96 hours each time of continuous infusion of chemo. It worked, brought my numbers and results down so I could get the transplant. I had lesions all over my spine and limbs, tumor in my lung, was facing spinal compression that radiation relieved and saved me from paralysis. I was on a fast , slippery slope at that time.
Yesterday the transplant doctor phoned and said I am lesion and tumor free with no signs of myeloma anywhere in my system! If you want something to encourage your brother, tell him my story. Hope it works out exactly the same for him and every other one here and everywhere that has a transplant. The reality is I know it will want to rear it's head again. They say you start feeling better after Day 100. I am looking forward to that.
Take each day as it comes.
RayOp
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rayop - Name: Rayop
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2004
- Age at diagnosis: 47
Re: Brother just had his SCT - can someone encourage him?
Hi Suzmal and brother,
I am the mother of 4 grown children and I live in New Brunswick. I had my SCT on November 20, 2013 at the Saint John Regional Hospital.
I was so sick the first several days after the transplant, it occurred to me that death might be better. Although we had collected enough stem cells for a second treatment, I knew there was no way I would ever go through that hell again. I kept these thoughts to myself, secret from my family and friends, I knew they would make light of them - and I was dead serious.
With the passage of time, and improvement of health, everything held new promise. Strange as it may seem, I compared the transplant process to that of giving birth. I wouldn't be the first woman to declare, DURING child birth, never to go through it again ... yet, I did, and with great anticipation of the joy to come, each and every time.
Now, the recovery period is a distant memory; the transplant was well worth it. We truly don't know what decisions we will make, until faced with them. But if you asked me today, would I do it again? I'd say, "In a heartbeat!"
Vanessa
I am the mother of 4 grown children and I live in New Brunswick. I had my SCT on November 20, 2013 at the Saint John Regional Hospital.
I was so sick the first several days after the transplant, it occurred to me that death might be better. Although we had collected enough stem cells for a second treatment, I knew there was no way I would ever go through that hell again. I kept these thoughts to myself, secret from my family and friends, I knew they would make light of them - and I was dead serious.
With the passage of time, and improvement of health, everything held new promise. Strange as it may seem, I compared the transplant process to that of giving birth. I wouldn't be the first woman to declare, DURING child birth, never to go through it again ... yet, I did, and with great anticipation of the joy to come, each and every time.
Now, the recovery period is a distant memory; the transplant was well worth it. We truly don't know what decisions we will make, until faced with them. But if you asked me today, would I do it again? I'd say, "In a heartbeat!"
Vanessa
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vanessa - Name: Vanessa Hargrove
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Brother just had his SCT - can someone encourage him?
While I am new to this forum, I was diagnosed with multiple myeloma in August 2007 at the ripe old age of 45 and underwent a stem cell transplant in December 2007. (Now that's a Merry Christmas and New Year for you!)
Brother, you got to stay mentally strong and eat whatever they put in front of you (even if he can't taste it). You’ve got to keep your body fueled as best as you can. You’re going to be sick (they did just poison you), but don’t focus on that -- do what you have to do to get better. So eat as much of the nasty crap as you stand.
Lord knows, I was sick as a dog. In less than a month, I lost 30+ lbs (14+ kg); I went from 212 lbs (96 kg) to just under 180 lbs (82 kg) (worst diet program ever). But, when I was awake, I shoved everything (except ground meat (i.e. hamburger or turkey)) down my gullet, knowing full well I was probably going to see it again. (Ah…Goodtimes!)
The good news: the feeling like crap stage will eventually pass.
One day, out of the blue, you’ll actually start tasting things (for me sour came back first, then salty). You’ll start to recognize the guy in the mirror. Your complexion will return to normal and your hair will return (of course, this assumes you weren’t bald already! Personally, I still Rock the Shaved Head Looks Good!!
Just keep working and stay strong!!!
Brother, you got to stay mentally strong and eat whatever they put in front of you (even if he can't taste it). You’ve got to keep your body fueled as best as you can. You’re going to be sick (they did just poison you), but don’t focus on that -- do what you have to do to get better. So eat as much of the nasty crap as you stand.
Lord knows, I was sick as a dog. In less than a month, I lost 30+ lbs (14+ kg); I went from 212 lbs (96 kg) to just under 180 lbs (82 kg) (worst diet program ever). But, when I was awake, I shoved everything (except ground meat (i.e. hamburger or turkey)) down my gullet, knowing full well I was probably going to see it again. (Ah…Goodtimes!)
The good news: the feeling like crap stage will eventually pass.
One day, out of the blue, you’ll actually start tasting things (for me sour came back first, then salty). You’ll start to recognize the guy in the mirror. Your complexion will return to normal and your hair will return (of course, this assumes you weren’t bald already! Personally, I still Rock the Shaved Head Looks Good!!
Just keep working and stay strong!!!
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Bdthrill - Name: Bdthrill
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 08/2007
- Age at diagnosis: 45
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