Thank you to all who answered my request for the best tip on auto SCT. I appreciate all your responses, and I will keep all your suggestions in the front of my mind as I pack to head to Rochester. I go to Mayo next week to begin my stem cell transplant.
To answer a question from mrozdav, who asked why I was going ahead with an early transplant, here is a link to Mayo's mSMART diagnosis guidelines for newly diagnosed patients, which says that both transplant eligible patients and patients who are NOT transplant eligible who have the t(4;14) mutation (which mrozdav says she has) are in the "Intermediate risk" category.
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
I have the del 17p mutation, which puts me in the high-risk category. That is why I have chosen to have my stem cell transplant after completing four cycles of Revlimid, Velcade, and dex (RVD). Both my oncologist and the Mayo myeloma specialist agreed that an early transplant for me will hopefully give me the best fighting chance against the del 17p mutation.
If anyone has any further suggestions or tips, either from being a transplant patient or from being a caregiver to a patient, your tips are certainly welcome.
Forums
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: What's your best auto stem cell transplant tip?
Best advice I could give after two transplants is to ask about Marinol (synthetic marijuana).
At one point, I couldn't keep anything down for a few days. I was on all standard things they offer you. And they were just about to start hydration intravenously when I asked for and received Marinol. Within 30 minutes, my nausea was gone. 2 hours later I was eating and drinking fine.
Luckily, I only took half the dose of what was offered, as I became high, which in my case was fine, but I'm glad I didn't take the whole dose.
At one point, I couldn't keep anything down for a few days. I was on all standard things they offer you. And they were just about to start hydration intravenously when I asked for and received Marinol. Within 30 minutes, my nausea was gone. 2 hours later I was eating and drinking fine.
Luckily, I only took half the dose of what was offered, as I became high, which in my case was fine, but I'm glad I didn't take the whole dose.
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stann
Re: What's your best auto stem cell transplant tip?
I had an auto SCT in November 2014 and, although not a pleasant experience, you get through it and 2 months later, I'm feeling pretty good. I'm back at work full time, with no nausea and only a little fatigue.
Some tips for the SCT:
Some tips for the SCT:
- Chew ice (or ice-blocks - I found lemonade ones the best) during the transplant. This significantly reduces the chance of mouth ulcers. I didn't get any.
- You may not want to eat anything for several days, but have some chocolate / strawberry milk available. I found this the easiest to start with before any solid food. Also, you may prefer to start with a very cold, light fruit-based drink (not whole juice).
- Be prepared to sleep -- lots, maybe up to 20 hours / day for several days.
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Wainui - Name: Wainui
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 56
Re: What's your best auto stem cell transplant tip?
I am in the hospital (Day +19).
Suck on popsicles for 30 minutes prior, during, and after infusion.
Also do good mouth care with the rinses they give you. I did use an extra soft toothbrush and soft gum picks, even though I was not supposed to. They wanted me to use a foam thing to brush teeth, but they don't clean. I never got one mouth sore.
They bring me 2 packets of glutamine 3 times a day to mix with juice or water, and I only had one bout of diarrhea, no vomiting, little nausea. I don't know if glutamine helped or I'm just lucky. I have been able to eat and good appetite through almost all of it; only a few days where my appetite was off.
I have very sensitive skin so I brought my own soft toilet tissue and Cetaphil lotion etc. I did end up with a horrible rash on my chest from a drug allergy to Cipro (ciprofloxacin) and also from the antibacterial cleanser they use around central line. I can't tolerate Tegaderm so they used Duoderm and SorbaView on my sensitive skin, but I even got a rash with that!
Get up everyday, wash up, and change into something comfortable. Move around and do not spend all day and night lying down. I sit up and read or watch TV, use my iPad to stay in contact with the world and watch Netflix or listen to Pandora on wifi.
I find I don't have the concentration to read anything lengthy, even though I brought books. Short stories or magazines are okay
Good luck. Have patience with yourself. I am taking long time to engraftment (I've been here almost 4 weeks!).
Suck on popsicles for 30 minutes prior, during, and after infusion.
Also do good mouth care with the rinses they give you. I did use an extra soft toothbrush and soft gum picks, even though I was not supposed to. They wanted me to use a foam thing to brush teeth, but they don't clean. I never got one mouth sore.
They bring me 2 packets of glutamine 3 times a day to mix with juice or water, and I only had one bout of diarrhea, no vomiting, little nausea. I don't know if glutamine helped or I'm just lucky. I have been able to eat and good appetite through almost all of it; only a few days where my appetite was off.
I have very sensitive skin so I brought my own soft toilet tissue and Cetaphil lotion etc. I did end up with a horrible rash on my chest from a drug allergy to Cipro (ciprofloxacin) and also from the antibacterial cleanser they use around central line. I can't tolerate Tegaderm so they used Duoderm and SorbaView on my sensitive skin, but I even got a rash with that!
Get up everyday, wash up, and change into something comfortable. Move around and do not spend all day and night lying down. I sit up and read or watch TV, use my iPad to stay in contact with the world and watch Netflix or listen to Pandora on wifi.
I find I don't have the concentration to read anything lengthy, even though I brought books. Short stories or magazines are okay
Good luck. Have patience with yourself. I am taking long time to engraftment (I've been here almost 4 weeks!).
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: What's your best auto stem cell transplant tip?
My husband had his auto stem cell transplant at Mayo in December 2012. We stayed in an apartment with the Serenity House Network, which was perfect for us and family members who helped us.
My husband never needed to be hospitalized. We made daily trips to the clinic as required and sometimes twice a day. He ate and drank when he did not feel he wanted to. His nausea was minimal but greatly controlled by a product a friend recommended. It is called "Quease Ease," an aromatic inhaler. We bought it at the Mayo Clinic store. No prescription needed.
Otherwise follow the directions of the Mayo staff, and you will be home before you know it.
My husband never needed to be hospitalized. We made daily trips to the clinic as required and sometimes twice a day. He ate and drank when he did not feel he wanted to. His nausea was minimal but greatly controlled by a product a friend recommended. It is called "Quease Ease," an aromatic inhaler. We bought it at the Mayo Clinic store. No prescription needed.
Otherwise follow the directions of the Mayo staff, and you will be home before you know it.
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ronnie - Name: Carol
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: May 2012
- Age at diagnosis: 69
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