Stem cell transplant: Any advice or tips 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!!

@fightingbluehen69 thank you for your post. my husband is at the beginning of his evaluation for a stem cell transplant for MDS EB1 and I am actively seeking information about being a caregiver. i have written down many of your suggestions. it really helps to hear from people like yourself with "real world" experience re: what works as well as tips and tricks. thank you!!!