My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Hi Lori,
It’s been a tough time because I’ve had some pretty bad nausea since day -2 and I’m now at day +3. Ive been told there will be tougher days ahead, but I’m hoping the nausea won’t be part of it going forward. They’ve tried a number of different meds for the nausea but so far nothing has helped. If you or anyone else have any suggestions to help them nausea that would be so helpful. Thanks for checking in.
Deb

Hi Deb, aw sweetie, I’m going to be pretty frank here…nausea, in varying degrees, can hang around for quite a while. The usual meds given are Zofran, Atavan (lorazapam) and Compazine. I mostly got by with the Zofran but did end up having IV’s of something stronger for a couple of days. I can’t remember the name of that med and can’t find it looking through old notes. But your BMT team has options available to help you get through the worst of this!

Getting through nausea is tough. You don’t feel like eating and sometimes nothing wants to stay down. So little nibbles of food is the best. At this point anything you can eat to get calories down, healthy, or not, is the goal. Protein is essential but sometimes it just isn’t in the program to get that past your lips.
I think you’re in-patient so you may not have the option of your caregiver bringing in outside food. Order ahead from your food menu of things you can snack on at night after the kitchen closes. I had Rice Krispie bars and Banana bread on hand 24/7 at the suggestion of my dietitian.
My BMT floor had a kitchen for patients where we could have ready made sandwiches, puddings, protein shakes like Ensure and Ensure juice, little cheese sticks, fruit, etc. but honestly I couldn’t eat much at all. My husband prepared little containers of ‘bites of food’ for me. Little squares of sandwiches, cheese, crackers with cheese, cookies, small cuts of broiled chicken breast, etc. whatever I could get down. When I was back at my lodging, Lactaid Ice cream filled the bill as a base for smoothies. Tons of calories, proteins, fats and calcium. But the nausea for me lasted months. Not everyone has lingering nausea though!

The 2nd week after the transplant is generally the roughest week when blood numbers plummet and before engraftment happens. Your body will be fatigued and weak and it’s not unusually for the mental attitude to wilt a little…difficult to remain perky! 😉
So you may have a few more days of feeling pretty loagy. Once you engraft, generally the worst of the flu-like symptoms start to improve! The white blood cells start circulating and help with healing of the damaged tissue. Guts can improve, mouth sores, if any, tend to disappear and fatigue lessens.
It really does get better, Deb! So, hang in there and if you need to talk I’m here as well as @katgob and so many others who have gone through the process. This is the toughest but most rewarding thing you’ll ever do! But it is worth the challenges you’re going through right now. ☺️

Ask for EMEND. Tell them Kathy from the City of Hope in California got it after 2 plus days of awful nausea. Zofran and Compazine did not work. I got Emend and my nausea was gone!!! It is good for 72 hours. That darn Melphalan is one tough chemo on the body.

Day 216- Checking in. How are all you doing walking down this BMT road!! I hope you are taking it a day at a time. To remember that the first 30 days of the body taking on the transplanted cells is the hardest. The best part is we are walking this journey together. Support one another and if you only read and do not post know we are all learning from one another. It is hard for me to believe I have walked the road i have. I hope i am able to support you.

A little about bald head care. Visit: https://www.headcovers.com/

I just bought 3 new hats at headcovers.com. 100% cotton and made in the USA. The Charlotte which bulks up, so I look like i have hair. Some people wear hats when the hair needs a cut. For many of us, Melphalan for a transplant has no mercy. What I know, is giving myself something beautiful to wear that makes me feel pretty as it has kept my bald head covered is what I want to see others do. There are a number of online sellers, and i have met others around town at the COH who bought hats on Amazon. I have stuck with headcovers because the comfort is my favorite part.

Hi Kat! Thanks for checking in! It’s always encouraging for our fellow BMT peeps, especially the newbies to get these positive feedbacks!
Headcovers.com was my go-to place for great headwear too. They have some really cute hats, scarves, wigs, etc. and are so helpful. I still have some of their emotional support magnets on my refrigerator. Do they still send those along with the orders?

My former neighbor used to make head covers from old t-shirts. These were given to a local wig store that would then give them to cancer patients. This neighbor, a former cancer patient, has since died.

That was really sweet of your neighbor to make those head coverings to donate. They’re much appreciated by cancer patients…
I’m so sorry to hear that she’s passed away. Her kindness lives on, I’m sure! Who knows how many of those caps are still in use?! Even though my hair has grown back, I still have some old chemo caps that I wear when out walking on chilly days when a wool sock hat is too warm. I bet you miss your neighbor, she sounded like a very lovely person.

Lori,

Yes. The magnets are on my old-style breadbox. They are so thoughtful and nice. I am happy to hear you have bought from them as well. They wrap it beautifully in tissue and tuck in the special magnet.
I plan to get a couple more items as my Christmas gift to me!!

njhornung- What a thoughtful neighbor. It reminds me of my mom. We had a skit at a women's conference i attend, that had a "SPA" theme. I talked with Mom on what we needed and what i might do. We found thick nice robes, and my mom made the dozens of cast members the wrap for your head. They were beautifully made and the ladies and most of them told me how special they felt. The loved them. My mom helped with many projects. I bet your neighbor was a kindhearted soul who loved bringing joy into the world too. One head cover at a time.

My husband is on day 87. Everything is going well except for some issues that may be caused by the tacrolimus. He should start tapering off the tacrolimus at day 100. We are hoping this will relieve the kidney issues and the hand tremors. The time has flown by. Can't wait to get back home.