Any advice or recommendations from patients or caregivers

It’s important to drink cold icewater. Buy a few Stanley Cups that keep drinks really cold, and are easy to screw top off. Wash in very hot water wish soap, or rotate in dishwasher to avoid germ buildup.
My husband took over my Yeti cup for his icewater, and I had to drink melted ice coffee for weeks until I broke down and bought him his own Stanley Cup, haha!

Your energy will drop temporarily, and your neutrophils will drop maybe even to zero. Making you have zero immunity. Just say no to outings with groups where you may be exposed to a virus.
So you will need a digital thermometer on your bedside table to monitor your temperature daily.
We had to go to the oncology evaluation center- it’s like the urgent care for Penn oncology when my husband’s temp was 100.9. Fluids and it went back down. Tests for viruses all negative thankfully!
Also my husband was constantly tachycardic due to dehydration. His heartrate would literally drop from 110 to 80 after receiving fluids! So I asked Penn to build in a weekly fluid infusion of 1,000 mls plain sodium chloride into his treatment plan. If in hospital, obviously daily fluids are best!

You may get prescribed daily Filgrastim (Neupogen or a biosimilar) beginning around Day +5 after transplant to speed neutrophil recovery.

Your mouth may develop mucasitis or even thrush.
Treatment for mucasitis is “Magic Mouthwash” with Lidocaine (refrigerated).
And for thrush it is called “Nystatin” or “Mycostatin”.
I wish that the oncologist or palliative care team had provided these two mouth rinses prior to treatment!
Both conditions are quite uncomfortable and the thrush is especially painful- tongue burns on sides & tip, and white spots.
Buy some disposable little Dixie cups for these 2 rinses.

Try to eat smooth foods like Cream of Wheat or Cream of Rice, baby instant oatmeal, yogurts, protein puddings.
Fairlife protein drinks and Muscle Milk both have a smooth texture- all the carageen gum or fillers in them really help lol, so they are perfect to stock up on.
My husband likes Coffee Chobani or Skyr coffee yogurts, chocolate “PROfeel” protein puddings, and”fairlife CORE POWER” drinks.
Chinese takeout vegetable fried rice also goes down easy.
I got frustrated making dinner and my husband was too tired to come down for dinner, plus he didn’t even want to eat anything.
So now I just buy a watermelon & cut it up and keep in fridge.
Sometimes I get takeout Mediterranean food, from this place called CAVA and their cucumber lime drink, and a honey baked salmon & cooked vegetables rice bowl.
Avoid fresh fruits and vegetables unless you can really sanitize them. Cooked vegetables are better. Frozen fruits in smoothies.
I feel like watermelon is safe because of the protective rind. But even scrub outside of watermelon well before cutting!!

Also buy a couple double pill organizers, with AM/PM meds for your daily meds. Make everything very simple for yourself. Keep a little basket by your bed for pain pill bottles, and ask for the flip top bottles, and not the child proof, or the screw top, as you may feel very weak at first.
If you’re not going to be in the hospital, maybe get a bed tray or bed desk. Bring extra or larger bedside table, because you may want to stay in bed. Buy some unscented baby wipes & a little flip top kick bathroom trash can& liners. You may be too exhausted to shower daily.

I did start doing the Penn telehealth therapy sessions for myself, and they have experience giving support for oncology patient caregivers. And I asked my PCP for a daily antidepressant, Wellbutrin.

Hey, the treatment sucks.
But it’s worth it!!

@jhdez79
I would say that you received a lot of helpful tips from @fightingbluehen69 , but stem cell transplants look different depending on where you get them and some other particulars about your treatment. There are many folks here that have had them. If you scroll up and click on the little blue blood cancers and disorders at the top left of your discussion, then, in the search bar type stem cell transplants. A ton of discussions will come up. I particularly like the one labeled “my stem cell transplant journey”.
Also I would like to tag @loribmt for you. She has a wealth of information about this.

Welcome @jhdez79 As @auntioakley mentioned, there are a lot fellow stem cell transplant (SCT) members in Connect. If you don’t mind sharing a little more about yourself, it will help me get you to the right discussions and targeted information. I have a plethora of information for you and your caregiver to help navigate this journey.

First it would be helpful to know the type of SCT will you be having. Will this be using your own cells or stem cells from a donor? What illness are you being treated for with this transplant?

I will be using my own stem cells for Multiple myeloma. We are Phx. We have to find lodging

Hi @jhdez79 Thank you for sharing more information about the type of stem cell transplant you’ll be receiving. Now I can zero in on what’s pertinent to you!

We have several members who have had an autologous stem cell transplant (ASCT…using their own cells) for Multiple myeloma.
This discussion was posted by @jstpeachey where she shared her ASCT while at Mayo-Phoenix. Lots of other members have jumped into the conversation. So I think it may be helpful for you. She shares her story from the patient perspective.
https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/
This is a list of some of the hotels near Mayo-Phoenix.
https://connect.mayoclinic.org/discussion/hotel-shuttles/
~~~
~What are your housing recommendations for Mayo Clinic in Phoenix, AZ?
https://connect.mayoclinic.org/discussion/housing-for-mayo-phoenix/
This caregiver guide is published by Mayo Clinic. It opens with the autologous stem cell transplant, which is what you’ll be having. You can skip over the allogeneic transplant information!
There are several menu items in the guide from nutrition, infection control and packing list to Caregiver support information, lodging, etc. So please take your time and click through all of links.

~Caregivers guide!
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/
(This is the lodging link from the guide) https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/phoenix/

Let me know if I can help you further. Do you live near Phoenix or will you have to travel?

@loribmt Thank you so much - would you happen to have these videos in spanish?

Hi @jhdez79 I don’t see any options for Spanish closed caption in the caregiver guide videos from Mayo.

However, I did a quick search on YouTube.com for Autologous stem cell transplants for Multiple Myeloma Patients in Spanish. Here are the results:
https://www.youtube.com/results
I think you’ll find some informative videos in that list. Were the lists of lodging options near Mayo Phoenix helpful?

@loribmt t Yes, Thank You!! They said a social worker would contact me, I guess I am just nervous with the lodging. The insurance said I needed a prior authorization, so I am stuck on if I should reserve it or not.

Hi @jhdez79 If it’s helpful, most places of lodging near Mayo Campuses, tend to cater to the needs of patients at Mayo and are flexible if changes need to be made…within reason.

If you found potential lodging, I’d say go ahead and book it now. I hate to have you lose out on a good place to stay while your insurance is dragging its heels!
BUT, make sure you check to see what the cancellation policy is. If your insurance delays your treatment, then usually it’s pretty easy to cancel the reservations. But again, check ahead.

Are you waiting for prior authorization for your stem cell transplant or for the lodging portion? Some insurances will pay a stipend to help pay for lodging.