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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Preparation for an autologous stem cell transplant

by BehaviorQueen on Wed Apr 22, 2015 4:55 pm

Greetings,

My husband is likely to have an autologous stem cell transplant (ASCT) sometime in the upcoming months. Since I am a planner, I had a few questions:

  1. It is recommended that we try as best we can to do this on an outpatient basis? We live less than an hour from the treatment facility. Do I need to do something special to prepare our home for the time that his immune system is so compromised?
     
  2. What type of masks (specific brand, model number and/or specifications) do you recommend that we get?
I'm sure I'll have more questions as it gets closer, but those are what I have for now.

Thank you in advance.

BehaviorQueen

Re: Preparation for an autologous stem cell transplant

by Kaew on Wed Apr 22, 2015 8:13 pm

Hi

I had an ASCT in November 2012 as an outpatient. Went to the hospital everyday for a month, didn't have any complication at all.

As a preparation to get my house ready, I had my air ducts cleaned, bought a couple of air purifiers, lots of Clorox wipe and hand sanitizer. I also have a dog, so I used the Clorox wipes to clean my dog feet and coat everytime she came back from outside. I didn't buy any masks because the hospital had given me lots of them.

Good luck .
Kaew

Kaew

Re: Preparation for an autologous stem cell transplant

by Spirit on Wed Apr 22, 2015 8:14 pm

I plan to have an ASCT in June and live about 55 minutes from the cancer center. They require a patient stay within 15 minutes of the hospital for four to five weeks with a caregiver. Fortunately, they have about 30 apartments for rent just two miles from the hospital. They also have special rates at a couple of nearby hotels.

There are daily appointments in the BMT clinic until discharged. I am going to try having the procedure done as an outpatient, but know that if I run a temperature of 100.5 F (38.1 C) or become dehydrated, etc., that I will be admitted to the hospital. A 24/7 caregiver and a backup caregiver are required and they must attend a caregiver class, plus a pre-transplant class to learn how to care for a post transplant patient. You could ask your doctor if they recommend a certain type of medical mask. There is a good variety of them on sale at Amazon.

Best wishes to your husband.

Spirit

Re: Preparation for an autologous stem cell transplant

by Nancy Shamanna on Wed Apr 22, 2015 9:09 pm

When I had my ASCT in 2010, I was mostly treated as an outpatient. I spent two days in hospital at first and then went home. Two weeks or so later, I spiked a fever and was ill enough to be admitted to hospital for another couple of days while tests were done to determine what sort of fever it was. I was in an isolation room for that.

But, mostly, I went back and forth for appointments, blood tests, and sometimes hydration thru my central line on weekdays. This was quite time consuming, and I wasn't well enough to drive myself there, so my husband and elderly parents took me back and forth. I would advise that you need lots of time to look after a transplant patient! We are about a 15 minute drive from the cancer centre, so it wasn't far away in that regard.

Also, as a caregiver, you will be eating your normal foods, but your husband probably won't want to eat anything other than mild foods.

If someone offers to help you with this, I would accept their help, unless they have a cold or are otherwise ill. A patient is really immune compromised at that time and vulnerable to infections. If you get sick, you would have to use a mask too!

There were a lot of medications to take after the transplant, and it was quite something to see all of those pills lined up to take every morning!

Best of luck to you. This period of neediness only lasted for a few weeks.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Preparation for an autologous stem cell transplant

by Tough Mom on Wed Apr 22, 2015 10:09 pm

I do recommend outpatient transplants when possible – it is so good for the patient to be at home. But being "less than an hour" away from the transplant center can still be quite far. It is every day at the transplant center for labs, infusions, transfusions, tests, etc., and the days can be long and rather tiring. Outside the transplant center, recovery requires a little exercise, good healthy mild food (yogurt, smoothies, Ensure), and a LOT of sleep.

I recommend that you should investigate if your insurance will reimburse for housing much closer. It is often easier to keep a small rental apartment unit clean as well (no kids, no pets, no bric-a-brac collecting dust ). I did a bit of a combo – 17 days at an apartment, then came home once my counts came back up. It was nice to be close to the hospital while I was at the lowest point, but SO good to get home as soon as possible.

If you do decide to stay at home the whole time, as others have said, the main concerns regarding infections are to get the home as clean as possible, especially with regards to carpets, kitchens, bathrooms, and pets. Diluted bleach is your friend – it is the indiscriminate killer of all viruses and bacteria. Use a vinegar and water spray on all fruits and veggies that the patient eats. Plan to wash their sheets often like a hospital does. Remove houseplants. Take a bunch of the masks from the transplant center. They are just standard surgical masks.

Tough Mom
Who do you know with myeloma?: myself
When were you/they diagnosed?: January 2013
Age at diagnosis: 45

Re: Preparation for an autologous stem cell transplant

by Bar-none on Wed Apr 22, 2015 11:36 pm

BQ, Greetings!

Many transplant centers have a transplant coordinator that will provide you with a guidebook that covers many of these questions and many, many more issues. This person can also help you with housing if needed typically. We had several meetings with the coordinator to go over questions and concerns, as well as emails and phone calls. Our center provided all needed supplies – masks, dressing change kits, etc.

All the best to you and your hubby! BN

Bar-none
Who do you know with myeloma?: Me
When were you/they diagnosed?: 3/14

Re: Preparation for an autologous stem cell transplant

by BehaviorQueen on Thu Apr 23, 2015 12:04 am

I want to thank everyone for their can do and encouraging words! It's a few months away, I think ... so I should have some time to prepare...

BQ

BehaviorQueen

Re: Preparation for an autologous stem cell transplant

by JPC on Thu Apr 23, 2015 6:58 am

Good morning, BQ

I supported my wife going through this in February of this year as an inpatient, and can pretty much validate the comments you received so far, but I will add the following.

Over 90 percent of patients going through the ASCT lose weight due the effect of the chemo on the GI tract. In my wife's case, she did not have bad GI issues, but for a week or two all food tasted bad due to impact on the taste buds. The team at the center will be monitoring your fluids very carefully (something they will mostly do, you just have to count your water bottles).

I read a recent study (though I could not find it now) where patients actually do better if they are a little bit above their ideal weight going into the ASCT. This clearly makes a lot of sense in light of the fact that most people lose weight. Also, keep in mind that, during and after the procedure, your husband will be on a low microbial diet, which they will explain to you. You will not be able to eat out for about 100 days after the procedure (depending on your center's protocols), even if your husband feels up to it after a couple of weeks.

So the bottom line is that, depending on your husband's current status with respect to weight, it could be worth the effort to "eat well" while he can. Now today, when we say eat well, we often mean "rabbit food". That is not what I am talking about. Not greasy, or poor quality food, of course, but upscale high quality meats and fish, and fresh veggies and fruits.

JPC
Name: JPC

Re: Preparation for an autologous stem cell transplant

by Beacon Staff on Thu Apr 23, 2015 7:10 am

Hello BQ,

The study JPC referred to may be the one discussed in this article:

"Obesity's Impact On Myeloma Stem Cell Transplant Outcomes: Not What You Probably Expected," The Myeloma Beacon, Jul 8, 2011.

There have been other studies that have shown similar results, although not focused specifically on pre-transplant weight. See, for example, the studies discussed in these articles:

"Beacon NewsFlashes - September 25, 2013," The Myeloma Beacon, Sep 25, 2013 (see first news item in article)

"Further Evidence Of A Positive Link Between Weight At Diagnosis And Survival In Multiple Myeloma Patients," The Myeloma Beacon, Dec 30, 2013.


Best of luck with your preparations.

Beacon Staff

Re: Preparation for an autologous stem cell transplant

by Music box lady on Thu Apr 23, 2015 7:46 pm

I did my stem cell transplant as an inpatient, and I was so tired I was glad I did not have to go to clinic each day. I had a lot of nausea issues that meds did not help. So many like the outpatient, but my choice would be inpatient if I had to do it again.

I was also too far from home to have that as an option. We had a good deal with a local hotel that gave us extra attention with changing sheets, towels, and cleaning. I also had a transplant coor­di­nator available to answer my questions.

Music box lady
Name: Margie
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2012
Age at diagnosis: 60

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