Bone Marrow Transplant: Need help with place to stay in Rochester, Mn

Aw, that poor guy. My heart goes out to your husband because I know how exactly how he feels. There’s no appetite or incentive to eat anything. Food doesn’t have any taste and the mouth-feel is off. Everything felt like cardboard to me. Can he nibble on anything like crackers, graham crackers, lactose free ice cream, pudding, small pieces of toast? My husband used to make mini foods for me on a plate such as one small bite of a pbj, or a small piece of chicken, 3 pieces of shell pasta and the like. Only one bite helped because it wasn’t enough to make me hate the ‘taste or feel’. Also, I was in another area of the house when he cooked so the smells didn’t impact me.

Sometimes those anti-nausea meds can stop things from moving through the digestive system so that’s counterproductive and can add on other layer of misery. If he can eat some yogurt daily with a little ground flax, that helps. Activia yogurt was very helpful for me. I know there are better yogurts for us but to make it easy for my husband grocery shopping we went with Activia. The active culture in there helped keep the normal gut biome happy.

You mentioned he couldn’t take his steroids before chemo. Is this something he takes right before chemo or is this an ongoing prescription? Also, have you notified his oncologist to see if they have some suggestions for him?

Lori,
Thanks for the ideas!
As of now, I only give him like 1 tablespoon of food at a time. I also keep jello made & pudding....those are his favorite.
He only takes steroids 1 hr. Before chemo.
I'm going to contact hemotology/oncology if it continues tomorrow.
To be honest, I'm worried.... I watched my Dad die in 2008. We found out May 2 Dad had cancer, (weighed 160 lbs),PET testing the 5th, results the 7th & he was dead May 22, 2008 weighing 94 lbs....so, I guess I'm a bit freaked out..
I'm so glad there's a support system on here & I am grateful for your advice.
Lisa

It’s perfectly understandable to get a little freaked out when someone you love is going through cancer treatments. I had several members of my family pass away from cancer over my lifetime and it leaves a huge impact. But it doesn’t mean we will have the same outcome.

I’m so sorry for the loss of your father. Some forms of cancer can be difficult to diagnose or sometimes symptoms are subtle, until they aren’t. Extreme weight loss for no reason is one of those potential indicators.

However, William has Multiple Myeloma, it’s been diagnosed and being treated early. I know the nausea from the chemo is pretty awful but it will get better and he’ll get through this part. He’s losing weight now because of the chemo, not the cancer per se. You’re doing all the right things in getting calories in him. While it’s important to get protein in, many times my doctor, nurses and the dietitian told me ‘just get calories down, we don’t care what you eat”. So there was a lot of ice cream. ☺️

Do you or William have any questions about the transplant coming up using his own cells?

Really sorry to hear that Lisa, and that William is so unwell.
Just thought I’d share what I used to make for my great aunt, my friends husband, and other relatives I’ve cared for through their palliative experiences, which they would say helped..
I think there it’s called farina (but not Italian farina), here it’s called semolina 1/3c. Milk (of any kind) 2c, water 1c, pinch salt, little bit butter or oil, teaspoon of sugar or honey, and a handful of chia seeds, simmered on stove (bring milk/water etc to simmer, remove from heat, whisk in semolina, return to heat, simmer 10, add chia seeds, simmer 5-10, stirring often).
This can be eaten warm or cold, and adding custard, yoghurt, or soft chopped/mashed fruit can work.
Pour leftover into glass container, cool, lid on and refrigerate for up to 3 days, and can be cut into little cubes and eaten in bites cool from the fridge (some of these guys used to tell me little bites cool from the fridge was easier to eat). It’s got protein, carbs, fibre, nutrients, and soothes digestive tract (chia is mucilaginous - replicating the good smooth mucous that lines the digestive tract which can help with less irritation). It’s cheap, and I still eat this myself when my colitis hits. Wishing you guys all the best.

Yes.
When we get to Mayo, will he have to stay in hospital over night?
They're using his own bone marrow, but I don't understand how they can get a treatment. Will he get right sick after the transplant?

Lisa, I understand that you have many questions about William's bone marrow transplant coming up. There's a lot of information to take in and it can be overwhelming for both the patient and the caregiver.

Mayo Clinic has created this education website here on Mayo Clinic Connect to help you and others like you:
- For Caregivers for BMT, CAR-T, and Hematology https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/

There are several pages of information. This page gives information specifically about getting a transplant using the patient's own cells and what to expect.
- Autologous Blood/Marrow Transplant (BMT) https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#Autologous

Lisa, keep asking questions. We can help find answers or direct you to the right people to ask.

Lisa, it's me again. You will also appreciate the information about housing, support for when you are on campus and financial assistance by clicking these links:
- Resources at Mayo Clinic in Rochester MN https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/rochester/#ch-tab-navigation
.
- Financial Resources https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/financial-resources/#ch-tab-navigation

Hi Lisa, @colleenyoung provided you with some great informational links for what will transpire during an autologous transplant, along with housing and financial resources.

I have a few more links for you with patients who received similar transplants at Mayo Clinic using their own cells. Recently @jstpeaches had her transplant in Phoenix. Her story is here:
MyAutologous Stem Cell Transplant Journey~
https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/
~~~~
Another member who had her transplant in Mayo-Rochester stayed at the Gift of Life transplant house. Please meet @jiminmorris who is the caregiver for his wife. He started this before his wife had her SCT.

Helpful suggestions as we head into BMT?
https://connect.mayoclinic.org/discussion/helpful-suggestions-as-we-head-into-bmt/
~~~
@caphondo received his auto-ransplant in Rochester and shared his story here: https://connect.mayoclinic.org/comment/747475/
~~~
More conversations with members who have MM are in this discussion group:
Want to talk about Multiple Myeloma: Anyone else?
https://connect.mayoclinic.org/discussion/multiple-myeloma-299aae/
I’m not sure what you can expect the first day that William goes to the clinic as to whether he’ll be admitted right away. Generally you will be in your place of lodging until there are appointments. You’ll have a number of informational classes to attend and several medical tests, blood work, etc., that will need to be done before this treatment begins.

Please take the time to read some of the member stories I sent. They give a great picture of the timeline.

I have another question. Is your husband’s Patient Portal set up? That will be the source of all of his appointments, your link to information about each appointment, it’s a means to connect with his transplant team.

Thanks Lori!

@william1970 Hi Lisa, thought I’d pop in to see how things are going for you and your husband. I believe you were supposed to be in Rochester around December 14th. Today is the 16th… Are you all settled in for the long stay? What’s the time schedule for your husband’s stem cell transplant?