I had superb care at Mayo Rochester for ASCT in February, 2014. Enjoyed living at GIft of Life Transplant House. Had no serious complications and no "inpatient" nights. Other posters are right - patience is key. I did not have much energy for TV or reading from Day 5 to 16 or so, but energy level comes up nicely after that point. Best of luck. I'm sure you'll do fine..
Walk around as much as you can. I used a WC to get to from the front door of Gonda to the transplant unit every morning at 8:40. But I began walking this route as soon as I could.
The patient-oriented culture at Mayo is phenomenal.
Wesley
Forums
-
wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
Re: What's your best auto stem cell transplant tip?
Like guitarnut, I had my stem cell transplant at The James in June and have nothing but high praise and gratitude for the care I received there. I would echo his words that everyone reacts differently. What I was not prepared for was the severity of the diarrhea and nausea I experienced. I would also caution you to not rush back to work. I foolishly returned to work 5 days after discharge from the hospital, thinking that the rush of energy and adrenaline I experienced upon returning home meant I could return to work. Like Mike said, this is a marathon, so pace yourself in returning to your normal activities.
-
Steve Mohr - Name: Steve Mohr
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: April 20 12
- Age at diagnosis: 56
Re: What's your best auto stem cell transplant tip?
My husband's transplant was at Mayo in the fall of 2011. He is also deletion 17p. Don't worry too much about maintaining sterility between the hotel and the hospital. They will tell you when your white count starts dropping. You then wear a mask when transferring. You see masks all over Rochester, so you don't feel like a freak. Keep your hands away from your mouth. Let others open doors for you, push elevator buttons, etc. Frequent hand sanitizer for all!
It's wonderful that you will have 3 care-givers. That will keep them much fresher and keep you a little more stimulated.
You will lose your hair, and Rochester is cold! Bring hats! My husband's head was cold even indoors. Comfortable clothes! They will not judge you for coming to your appointments in sweatpants or lounge pants. If it makes you feel better, buy some prettier ones before you go. Tops that are easy to get to your port or iv line. Shoes or Uggs that are easy to put on. Really; your energy level will be that low. Most hotels are accessible to Mayo by underground or above ground tunnel so that you do not have to go outside in inclement weather.
You will have some pre-transplant classes to go to ahead of time. They will tell you supplies to buy: baby shampoo, hand sanitizer, baby wipes (almost everybody gets diarrhea), thermometer, etc. They will give you a list.
The organization and professionalism at Mayo blew my husband and I away. He is a doctor and I am a nurse. We both worked at UCLA hospital and have dealt with the University of Michigan hospital. This was a whole different ball game!
Best of luck to you, and feel free to private message me at any time.
It's wonderful that you will have 3 care-givers. That will keep them much fresher and keep you a little more stimulated.
You will lose your hair, and Rochester is cold! Bring hats! My husband's head was cold even indoors. Comfortable clothes! They will not judge you for coming to your appointments in sweatpants or lounge pants. If it makes you feel better, buy some prettier ones before you go. Tops that are easy to get to your port or iv line. Shoes or Uggs that are easy to put on. Really; your energy level will be that low. Most hotels are accessible to Mayo by underground or above ground tunnel so that you do not have to go outside in inclement weather.
You will have some pre-transplant classes to go to ahead of time. They will tell you supplies to buy: baby shampoo, hand sanitizer, baby wipes (almost everybody gets diarrhea), thermometer, etc. They will give you a list.
The organization and professionalism at Mayo blew my husband and I away. He is a doctor and I am a nurse. We both worked at UCLA hospital and have dealt with the University of Michigan hospital. This was a whole different ball game!
Best of luck to you, and feel free to private message me at any time.
-
rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: What's your best auto stem cell transplant tip?
CabinGirl,
That makes perfect sense. I think I would have made the same decision. In my case, I do not have the same genetics, which I guess muddies the water to some degree.
May I ask others reading the forum what led you to a decision to transplant or not?
That makes perfect sense. I think I would have made the same decision. In my case, I do not have the same genetics, which I guess muddies the water to some degree.
May I ask others reading the forum what led you to a decision to transplant or not?
-
dranton - Name: Anton Tolman
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August, 2014
- Age at diagnosis: 51
Re: What's your best auto stem cell transplant tip?
I wish I had known that, when you have been on antibiotics for months, your healthy gut bacteria gets killed off and you need to be very careful not to get C. diff (a very bad gut bacteria that is usually kept in check by good gut bacteria) You get C. diff most often from hospitals or nursing homes. I would recommend everyone start taking probiotics as soon as they get off antibiotics.
I am not a doctor, so I don't know if you can take probiotics at the same time that you take antibiotics.
Cathy
I am not a doctor, so I don't know if you can take probiotics at the same time that you take antibiotics.
Cathy
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: What's your best auto stem cell transplant tip?
I was told many years ago to make sure to eat yogurt with live cultures in it whenever taking antibiotics to replenish the good bacteria in the gut that the antibiotics knock out. I've never gotten C. diff or other intestinal infections when taking antibiotics. I credit the live cultures in the yogurt for that. Probiotics should probably do the same thing.
One of the hospitals in the Philadelphia region has been doing research on eating yogurt and the level of infections that develop in patients while in the hospital. They found that adding a container of yogurt to the food trays of patients in the hospital led to a drop in infections by a significant amount. They didn't change any of their other procedures during this time. It is now an established procedure in that hospital to put a container of yogurt on all food trays for patients.
Nancy in Phila
One of the hospitals in the Philadelphia region has been doing research on eating yogurt and the level of infections that develop in patients while in the hospital. They found that adding a container of yogurt to the food trays of patients in the hospital led to a drop in infections by a significant amount. They didn't change any of their other procedures during this time. It is now an established procedure in that hospital to put a container of yogurt on all food trays for patients.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: What's your best auto stem cell transplant tip?
The best advice I can give you is to tell your caregivers to stop asking you how you feel!
You are 80% dead, you've got a variety of side effects going on, your hair is falling out in clumps all over the house, and you can barely get out of bed. No, I don't feel well, so stop asking me every 15 minutes!
My wife was great, but my mother drove me nuts.
Remember, it's about three weeks of hell and then it's over.
Good luck to you. Jerry
You are 80% dead, you've got a variety of side effects going on, your hair is falling out in clumps all over the house, and you can barely get out of bed. No, I don't feel well, so stop asking me every 15 minutes!
My wife was great, but my mother drove me nuts.
Remember, it's about three weeks of hell and then it's over.
Good luck to you. Jerry
-
JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: What's your best auto stem cell transplant tip?
JBarnes wrote:
LOL. Great tip, Jerry. Thanks for the smile.
The best advice I can give you is to tell your caregivers to stop asking you how you feel!
LOL. Great tip, Jerry. Thanks for the smile.
Re: What's your best auto stem cell transplant tip?
CabinGirl,
Thank you for posting your question. I, too, although considerably older than you (nearly seventy), am reaching the point where I have to decide whether to have an early transplant. I have the t(4;14) and deletion 13 mutations, so I am also not in the low-risk category. I had read that Mayo Clinic specialists believe that early stem cell transplants are the way to go with high-risk patients; what you wrote confirms this.
I see that you were diagnosed only in last September and so I am wondering what kind of remission you achieved in such a short time frame. I am making the assumption that it was a complete remission, or even better, and am very glad for you if that is, indeed, the case.
I myself (IgA kappa) started treatment on Revlimid and dexamethasone in early August and have gone from 3400 to 138 IgA as of this past week. I do not yet know whether I have reached my specialist's desired goal, but think that we will soon be discussing transplants again.
Your post has persuaded me that early transplant is the way to go. I had been planning on getting a second opinion from the Mayo Clinic (I am at Johns Hopkins), but, clearly, based on your experience, they would recommend to go forward. I also wonder whether you will be put on maintenance drugs (and what kind(s)) after your stem cell transplant. What induction treatment did you originally receive?
Best of luck throughout this whole process. I wish you the best.
Thank you for posting your question. I, too, although considerably older than you (nearly seventy), am reaching the point where I have to decide whether to have an early transplant. I have the t(4;14) and deletion 13 mutations, so I am also not in the low-risk category. I had read that Mayo Clinic specialists believe that early stem cell transplants are the way to go with high-risk patients; what you wrote confirms this.
I see that you were diagnosed only in last September and so I am wondering what kind of remission you achieved in such a short time frame. I am making the assumption that it was a complete remission, or even better, and am very glad for you if that is, indeed, the case.
I myself (IgA kappa) started treatment on Revlimid and dexamethasone in early August and have gone from 3400 to 138 IgA as of this past week. I do not yet know whether I have reached my specialist's desired goal, but think that we will soon be discussing transplants again.
Your post has persuaded me that early transplant is the way to go. I had been planning on getting a second opinion from the Mayo Clinic (I am at Johns Hopkins), but, clearly, based on your experience, they would recommend to go forward. I also wonder whether you will be put on maintenance drugs (and what kind(s)) after your stem cell transplant. What induction treatment did you originally receive?
Best of luck throughout this whole process. I wish you the best.
Re: What's your best auto stem cell transplant tip?
Bring with you more comfortable clothes than you think you will need. EJ was told he would need to change his clothes (pajamas and sweats) every day. He wasn't allowed to wear anything two days in a row. He is 6' 4" (1.93 m) and the hospital clothes just didn't fit him. I did more laundry while he was in the hospital than I've ever done!
Watch out for skin rashes, acne, etc. EJ didn't know he had an allergy to penicillin and spiked a 105+ F (40.6+ C) fever, went into atrial fibrillation, and had 3 different rashes covering his body. I had noticed that he had what I thought was acne several days before and I never said anything, which in reality was the first signs of the allergy.
Best of luck! It will hopefully be over before you know it!
Lyn
Watch out for skin rashes, acne, etc. EJ didn't know he had an allergy to penicillin and spiked a 105+ F (40.6+ C) fever, went into atrial fibrillation, and had 3 different rashes covering his body. I had noticed that he had what I thought was acne several days before and I never said anything, which in reality was the first signs of the allergy.
Best of luck! It will hopefully be over before you know it!
Lyn
-
Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
25 posts
• Page 2 of 3 • 1, 2, 3
Return to Treatments & Side Effects