Greetings to my friends at the Myeloma Beacon,
I am currently prepping for a stem cell transplant to be done at at Dana Farber in Boston. I have already started two-week Cytoxan (cyclophosphamide) before the stem cell collection, to be done next week. I am in reasonably good health after one cycle of chemo. My numbers have been stable without any chemo.
I am anxious and also excited. I am not excited about a two week and a half stay at the hospital, which I know is a must, It comes right in the middle of football season, but that's no big deal. The most important thing to me is to get long-term health. Sometimes you read about negative outcomes here, and sometimes you need to accept it,
I am looking forward to building up my strength, I was in pretty good health before I was diagnosed. Pretty sure I can get back to where I'm strong and I'm a fighter.
It seems overwhelming sometimes, but it's good to know that there are places like this to express your feelings
Best Wishes!
Chris
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6 posts
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BigRhody13 - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2-15-2016
- Age at diagnosis: 52
Re: Upcoming stem cell transplant at Dana-Farber
Best of luck! It sounds like you have a very positive attitude, which is a bonus while going through all this. Hope everything goes as well as it possibly can for you.
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Upcoming stem cell transplant at Dana-Farber
I'm sure your transplant will go great, Chris.
You said that you've had "one cycle of chemo". It would be unusual to do a transplant after just a single cycle of treatment. Most myeloma patients receive at least 4 cycles of a treatment regimen before they do a stem cell transplant.
Did you mean to say that you've had just one treatment regimen – perhaps Revlimid, Velcade, and dexamethasone – so far?
A "cycle" of treatment is usually 3 or 4 weeks, depending on the timing of the "rest period" (the week or so when the patient doesn't receive any treatment). For example, if someone is being treated with just Revlimid and dex, a cycle is often 28 days, with Revlimid being taken the first 21 days of the cycle, followed by 7 days when the drug is not taken, after which the cycle repeats itself.
In any case, good luck with your stem cell harvest and transplant!
You said that you've had "one cycle of chemo". It would be unusual to do a transplant after just a single cycle of treatment. Most myeloma patients receive at least 4 cycles of a treatment regimen before they do a stem cell transplant.
Did you mean to say that you've had just one treatment regimen – perhaps Revlimid, Velcade, and dexamethasone – so far?
A "cycle" of treatment is usually 3 or 4 weeks, depending on the timing of the "rest period" (the week or so when the patient doesn't receive any treatment). For example, if someone is being treated with just Revlimid and dex, a cycle is often 28 days, with Revlimid being taken the first 21 days of the cycle, followed by 7 days when the drug is not taken, after which the cycle repeats itself.
In any case, good luck with your stem cell harvest and transplant!
Re: Upcoming stem cell transplant at Dana-Farber
Hi Chris:
I was also 52 when diagnosed with multiple myeloma. I had my stem cell transplant in May, and am now in stringent complete remission and minimal residual disease (MRD) negative. The transplant itself was not as bad as I was anticipating, and I ended up staying only 12 days in the hospital. They will let you go home (usually) as soon as your blood counts are satisfactory.
I know there are many on this forum who prefer to have an outpatient experience for their transplant, but I can tell you I truly appreciated being in the hospital with quick nurse responses and IV meds when needed, not to mention that it gave my husband a break so he wasn't having to watch me every second, and worry. Avoiding a trip, whether by car, or walking to the hospital, is something that I don't think I would have handled well. Don't get me wrong, it wasn't a vacation, but I didn't have a horribly bad time.
When you get your melphalan, remember to chew ice before, during, and after. It certainly made a big difference for me – I didn't have any mouth sores, at all.
A positive mind set will be a big part of your recovery, and you seem to have a very good perspective. Best of luck to you.
Kathleen
I was also 52 when diagnosed with multiple myeloma. I had my stem cell transplant in May, and am now in stringent complete remission and minimal residual disease (MRD) negative. The transplant itself was not as bad as I was anticipating, and I ended up staying only 12 days in the hospital. They will let you go home (usually) as soon as your blood counts are satisfactory.
I know there are many on this forum who prefer to have an outpatient experience for their transplant, but I can tell you I truly appreciated being in the hospital with quick nurse responses and IV meds when needed, not to mention that it gave my husband a break so he wasn't having to watch me every second, and worry. Avoiding a trip, whether by car, or walking to the hospital, is something that I don't think I would have handled well. Don't get me wrong, it wasn't a vacation, but I didn't have a horribly bad time.
When you get your melphalan, remember to chew ice before, during, and after. It certainly made a big difference for me – I didn't have any mouth sores, at all.
A positive mind set will be a big part of your recovery, and you seem to have a very good perspective. Best of luck to you.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Upcoming stem cell transplant at Dana-Farber
Good luck, Chris! If everything goes reasonably well, you should be back to your old fitness level in pretty short order (or at least that was my experience).
I don't know if you have anything like this in your area, but here in Sacramento there's a group that sponsors 10 weeks of small group athletic training sessions for anyone coming out of cancer treatment. These sessions are led by trainers with experience in dealing with cancer patients, with the idea of getting people back on their feet and moving as soon as possible. I did this after my transplant and I think I ended up in significantly better shape than I was in before I was diagnosed. You can ask the doctors and nurses at Dana-Farber if there is something similar available in your area.
I don't know if you have anything like this in your area, but here in Sacramento there's a group that sponsors 10 weeks of small group athletic training sessions for anyone coming out of cancer treatment. These sessions are led by trainers with experience in dealing with cancer patients, with the idea of getting people back on their feet and moving as soon as possible. I did this after my transplant and I think I ended up in significantly better shape than I was in before I was diagnosed. You can ask the doctors and nurses at Dana-Farber if there is something similar available in your area.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Upcoming stem cell transplant at Dana-Farber
Hi Chris!
My husband had his stem cell transplant through Dana Farber / Brigham and Womens in August 2015. The nurses at Brigham and Womens are phenomenal! He was in very capable hands, which allowed me to go back home to Connecticut to get the house clean before he was released to come home.
His advice is to make sure you chew ice or popsicles when you get the melphalan prior to receiving your stem cells, and to walk the unit several times a day even if you don't feel like it, especially on those "nadir" days. He was released a day early because he made the effort to get out of bed every day to shower, walk ,or sit up in the chair. He was told that those who get some exercise generally fare better.
He had a couple of uncomfortable days, about 10-11 days post melphalan, which are the"nadir" days when your WBC count nears zero. But once the stem cells engraft, the WBC count goes up, and you will feel much better.
The things he brought with him to the hospital were a light fleece blanket, good pair of slippers, robe, fleece jacket, hat, electronic devices and reading material. He used the hospital "pajamas" and most of his toiletry needs were supplied by the hospital.
Best of luck to you and hope you have a speedy recovery!
My husband had his stem cell transplant through Dana Farber / Brigham and Womens in August 2015. The nurses at Brigham and Womens are phenomenal! He was in very capable hands, which allowed me to go back home to Connecticut to get the house clean before he was released to come home.
His advice is to make sure you chew ice or popsicles when you get the melphalan prior to receiving your stem cells, and to walk the unit several times a day even if you don't feel like it, especially on those "nadir" days. He was released a day early because he made the effort to get out of bed every day to shower, walk ,or sit up in the chair. He was told that those who get some exercise generally fare better.
He had a couple of uncomfortable days, about 10-11 days post melphalan, which are the"nadir" days when your WBC count nears zero. But once the stem cells engraft, the WBC count goes up, and you will feel much better.
The things he brought with him to the hospital were a light fleece blanket, good pair of slippers, robe, fleece jacket, hat, electronic devices and reading material. He used the hospital "pajamas" and most of his toiletry needs were supplied by the hospital.
Best of luck to you and hope you have a speedy recovery!
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ByYourSide - Name: Susan
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 65
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