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

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.

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.

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. ☺️

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

Good morning, Deb! Well? How are you doing on the other side of transplant so far? All the little minions should be circulating your body looking for those magical pores to sneak into your bones. Once inside, they will stake their claim and start up the blood cell factories. ☺️
Going to take some time but you’ll get there! This isn’t a race, it’s a marathon so hang in there through all the excitement. There is a 2nd chance at life waiting for you at the finish line. 💖

Apologies for the incorrect recipient message @deb13.
Trying this again…..@deb913 - I also want to send my support to @deb913 whose original post on uncertainty about the transplant and all of the great follow up questions to @loribmt and @katgob have helped me prepare for this process if I do receive this treatment. I so related to all of your detailed questions as I am a big planner too 🙂. Wishing all of the best for you and watching your journey with much respect for your courage in moving forward with it. Some BMT approved flowers to hopefully brighten your day 🙂 - 🌻🌻🌻🌻🌻.

I also want to send my support to @deb13 whose original post on uncertainty about the transplant and all of the great follow up questions to @loribmt and @katgob have helped me prepare for this process if I do receive this treatment. I so related to all of your detailed questions as I am a big planner too 🙂. Wishing all of the best for you @deb13 and watching your journey with much respect for your courage in moving forward with it. Some BMT approved flowers to hopefully brighten your day 🙂 - 🌻🌻🌻🌻🌻.

Hi Kat,

Thank you so much for the encouragement and your prayers - so very appreciated. And especially the reminder to live one day at a time - such a simple phrase for what can be challenging to do 🙂. Yes I have been talking to god each day asking for patience and acceptance for whatever is supposed to happen. Trying to be open to the path I am meant to follow here, not just what I think should happen. I worked for 40 years in a profession using logic to solve problems and design solutions, so it is a challenge to realize that this is not something I can easily solve with those skills.

I did get my welcome kit from NMDP so I’m in there as a recipient. My heritage is European (Slavic, German, other European). So hopefully if there is a good match found, it will be a donor who is healthy and willing to commit. I know there can be many obstacles between finding a match and the actual donor stem cell collection.

And I really appreciate your stating that there are also other options if this donor transplant is not the treatment. I have spent many hours researching other possible treatments at reputable medical center websites (MD Anderson, Sloan Kettering, Cleveland Clinic to name a few). I am preparing to discuss all of this with my primary hematologist next week as well. My doctor had mentioned some other possible treatments as well, but these would not address the bone marrow. I am concerned about the possibility of MDS as well since my bone marrow has not recovered. As mentioned before, my doctor did talk about a BMB in the near future if counts do not improve.

Thanks to you and Lori @loribmt again for all of your support and encouragement. Whatever happens in my journey, I know that you both are a true gift in my life. Much gratitude. 🙏🙏🙏
P.S. I write my responses in Notes on my tablet and then just copy them over to MCC. Just wanted to be careful that I am not a super fast typist to post both of these responses to you and Lori so quickly lol.

Thanks Lori for your support and encouragement - it means so much! Yes interesting you mention the cord blood transplant option. I had asked the BMT doctor about this possibility at the beginning of the donor process since I had read that GVHD can be milder and sometimes more easily controlled with cord blood transplants. Also there is not the uncertainty with finding, screening, and scheduling the donor’s time. He was not in favor of this as an option and at the time I didn’t ask for more explanation - I was still finishing my last two cycles of chemotherapy and feeling overwhelmed with all of the information.

I have since read that there can be slower engraftment and inconsistent screening to identify potential issues with cord blood, but I am honestly not sure if that is why the BMT doctor was not in favor of this. I may bring this up again with my primary hematologist at the visit next week to get a clearer understanding of why they do not favor this approach.

Thank you again for your support and encouragement. In this situation that no one would choose, connecting with you and Kat @katgob has been a wonderful gift. I will keep you posted as my journey continues. Many, many thanks. 🙏🙏🙏

j0318- Are you in the "Be a Match" pool? I am not sure your background, but blood and its products have interested me for years. I donated blood first, then platelets for 25 years. My blood numbers trending down after my 2 years of cancer treatments caused me concern. Others who were treating me did not notice. I got someone in scheduling who got a dr to approve me getting a visit with a hematologist.
Meeting him once, had me heading to get a BMB and a diagnosis of MDS, I am Caucasian, so my match was found in a couple months. I have talked with many in my hematology office and blood services that more nationalities need to donate. Blood is specific. I talk to my nieces and nephews about donating blood. They have mixed heritage and could be a match someday to save someone's life.
I know they have more options for treatment. Telling my God you need a donor!!!!!! I so feel for you and hope a plan is found.
Enjoy your days. Live each a day at a time and make them full of love and joyful times.