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

Hi Lori,
Thank you for sharing your valuable insight. His neutrophils were 30 on Thursday, August 24 but have more than doubled today Friday and are now at 70. It's a glimmer of hope and we continue our prayers for this upward trend. We will have the opportunity to see him this weekend but I'm preparing myself for the worst. Is there one thing that someone might have said to encourage you through that difficult time? I spend most of my days in tears for him.

Hi @leilab1 At day 21 post transplant your son’s blood numbers most likely still pretty low as engraftment would have happened only recently. Once that takes place the newly planted cells start churning out healthy blood cells. The white blood cells may help bring about a more positive change. But it’s so important right now to keep up with the antibiotics, anti-fungal medications (AmBisome) to fight the yeast infection.

At this time, as you know, he is very vulnerable to infections whether bacterial, viral or fungal. I don’t meant to alarm you but when illnesses happen at this early stage in the transplant they can be difficult to treat and escalate quickly. That’s why his doctors are treating this aggressively. Neutropenic fevers are troublesome because often it’s really difficult to find a cause. So it’s imperative to arm your son with those strong broad spectrum antibiotics. Now that his doctors have found the culprit he should start improving.

Nausea was my best friend for quite some time too. I’m so sorry your son is having that side effect. It’s miserable. I was on 3 different meds and finally daily IV’s of a strong anti nausea. But the one that helped me the most was sublingual Zofran tablets. They dissolved immediately under my tongue and brought me enough relief to get a few bites down.

Anything he wants is on the table! (Unless he has a sugar restricted diet for the yeast infection ). It doesn’t have to be healthy as long as he gets calories in and if it contains protein all’s the better! I ate Lactaid Ice Cream. It’s delicious but lactose free so it didn’t cause any tummy issues. My husband would make me daily shakes with banana chunks or canned fruits, because no fresh fruits or veggies were allowed. The banana had to be disinfected on the outside before peeling. My husband would also toss in a teaspoon of ground flax seed (that he baked first to 160 degrees to kill bacteria)

I tried to eat some Activia yogurt daily though I could only get down about 2 spoons-full at a time. I ate Rice Crispy bars too. Actually it was my Mayo Dietician told me try those. Other things that may appeal to him are banana bread, apple sauce, cheese sticks (but no artisan cheeses. They must be pasteurized), granola cereal just to nibble on. I couldn’t stomach Ensure shakes nor could I stand the taste of the protein powders. My husband would sprinkle Carnation Instant breakfast into my shakes.

I’m 4 years post transplant now and feeling like nothing ever happened. So I want you and your son to know this is possible. At 21 days, it’s so early in the game that nothing I can say will have him believe me that he’ll feel better! But he will get past this one minute, 1 hour, 1 day at a time and then get his life back.

I want to share a story with you about a young woman (19 at the time) named Sky whom I mentored through her BMT. I think it will give you some hope.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Has your son ingrafted yet?

Our 25 year old son is on Day+21 post Bone Marrow Transplant. He has had FUOs(Fevers of Unknown Origin) for three weeks now. He has also not been able to eat solid food during this time due to high volumes of nausea.
Infectious Disease dept. discovered he has a yeast infection which could be causing fevers as well as the nausea.
They had to remove his Central Line due to yeast contamination. He was on a host of antibiotics previously but now getting AmBisome via I.V. He has been struggling very hard without relief.
Anyone else have fevers post BMT?

It’s wonderful news that her blood counts are improving! She’s definitely on the upswing! The rest takes time and patience. Slowly she’ll regain her strength and feel like eating a little more. Keep me posted! ☺️

Thanks for reaching out. She is much improved, attempting to again eat solid food. Blood counts are improving. Apparently the pain is now manageable without oxy.

We continue to remain prayerful about her recovery.

Good morning, @pgcdds I just wanted to check in with you to see if your friend is feeling any better. We chatted 4 days ago and at that time she was experiencing severe abdominal pain. There are many medications at the disposal of her transplant team to help her get through the worst of the side effects. I felt like my team of diligent nurses were my guardian angels!
With her transplant being only 10 days old, she’s coming into the thick of things right about now. But within a few days when her new stem cells engraft, she’ll begin to feel much better. Let her know this is just temporary. It’s worth the fight! ☺️
Do you get to visit with her in person?

Thanks so very much Lori.

With your friend’s allogenic transplant she’ll need to be very vigilant with any new or unusual symptoms. She should not hesitate to inform her transplant team. Nothing is too small to report!
During the first 100 days of transplant, small infections or irritations can get out of control quickly because of her impaired immune system. The chemo used prior to transplant is very harsh. It cleans out the marrow so that the newly transplanted cells will be able to set up ‘housekeeping’ in a pristine environment.

Chemo destroys rapidly dividing cells, whether cancerous or normal cells in our digestive systems from mouth to intestines. So, very often there is painful irritation in the mouth and esophagus and sometimes of the stomach and intestines. This can cause nausea and diarrhea depending on how deeply irritation penetrates beyond the mucosal tissues.
Conditions can become acute and trigger graft vs host disease. That’s why symptoms need reported and treated quickly.

After about the 100 day mark, the body and new stem cells start playing together better and the new immune system will not be quite as aggressive. Reactions that used to develop quickly, will generally transpire at a slower rate.

The next 2-3 weeks should be the worst for your friend. Her blood numbers will start dropping as the chemo kills off her old blood cells. Her new stem cells should engraft in about 12 to 15 days(sometimes longer) and start producing new blood cells; Red, White and Platelets. At that point she’ll start feeling better slowly as the white blood cells run to the rescue! ☺️

She’s going to feel extremely low in energy and possibly spirits until that happens. There’s no way to rush engraftment so just be supportive and let her know she’s going to get through this!! There is life on the other side of transplant and it will be worth the effort…she’s getting a second chance at life. ☺️

I’m here for her (and you) any time. There are a number of us in the forum who have had allo transplants and will help bolster her up! Don’t hesitate to reach out.

Are you her caregiver during her transplant journey?

Hi Lori, thanks so very much for your concern. She had an Allograft performed on 11-22-22.

Hi @pgcdds Oh gosh, I’m so sorry your friend is having such excruciating abdominal pain! Severe pain isn’t usual but it isn’t out of the realm of possibility. I hope she has talked to her transplant team. They need to know this ASAP.

What type of stem cell transplant did your friend have? Was she able to use her own cells or did she have donor cells. If these were her own, the pain can be a side effect of her conditioning chemo or medication or myriad other influences. If she had donor cells this could be a sign of Graft vs host disease. Or again, the side effects of chemo and meds. Either way, this needs to be addressed very quickly to find the cause.

Let me know, ok?