Vomiting and Nausea after BMT

Hi @wakop. My heart goes out to your son. Having a bmt isn’t a walk on the beach and some of the side effects of early transplant can carry over for several months. However, I’m 2 months shy of my 5th Rebirth-day and want to let your son know that having the transplant will give him a second chance at life! It’s an amazing gift and well worth the effort.

At 60+ days he’s a little beyond the half-way point of the critical benchmark of 100 days. Though it’s not a magic number, by 100 days usually things start leveling out in blood numbers, adjustments to meds and recovery from the pre-conditioning chemo and the transplant itself. Considering everything your son went through, it is a great deal of trauma to the body and recovery is slow, but steady.

Nausea seemed to be my companion for well over 60 days. It was worse initially and unpredictable. I’d lost so much weight that it was getting concerning. Eating was a struggle. As the weeks went by, the nausea did lessen and eventually before 3 months was up I was fine. The period of waning nausea was usually in the morning immediately following a bm. That perplexed my doctor/team as well. There was nothing clinically wrong that they could find. I later realized that it may actually have been linked to my anti-nausea meds. While they helped immensely, the meds also have the tendency to stop the normal peristalsis of the intestines and that may have contributed to the nausea. Once I stopped taking them my guts improved.
I also felt better when I could drink more water. That was an issue for a while too…getting enough water daily. When I started drinking room temperature water that helped. Also I avoided anything that caused mucous in my throat such as milk.

It’s encouraging that everything checks out with your son and he’s doing great…aside for the nausea. I think this may just be a matter of time.
Has he tried any of the Queasy Drops candies or candied ginger. Both of those helped me with queasiness.
Is he finding there are some foods that don’t agree with him more than others?
May I ask what illness your son had that necessitated a transplant?

Hi Lori,
He was diagnosed will ALL in July 2023. They did traditional chemotherapy the first month but it didn't work so they did chemo and added immunotherapy which brought him into remission in October 2023.
There really does not seem to be any rhyme or reason to his nausea and vomiting, it's very random. He is looking weight quickly (24 lbs in 3 months). He is still hospitalized and has zero appetite. I've tried some of his favorite foods and he barely touches them.
His mental health has really deteriorated in the past few days, he's irritable and just wants to sleep all day/night. He wants more than anything to get out of the hospital but is unable to meet the criteria of up and walking and eating.
As a Mom it is difficult to see him struggle so much. I just wish he could start feeling better. He told me, "everyone keeps telling me how good my numbers look, but I can't feel it." Thanks for listening.

Wendy

Hi Wendy. I’m so sorry your son is having such a challenging time with the nausea. For me too, that was the worst part of the whole process. As a mom I’m sure you feel so helpless and frustrated because there is little you can do to change how he’s feeling. I watched my husband age during my whole AML/transplant odyssey. For both of us, my lack of appetite and nausea was the most troubling. That actually started with my chemo for AML and then carried over with the transplant several months later.
For whatever reason, some of us have more nausea than others. I lost a total of 40-50 pounds between the AML chemo and then with the transplant…and I’m not a large person. I understand how frightening this level of weight loss looks and feels. Sadly, malnutrition can take a toll mentally as well as physically.

My husband was determined to get me to eat. I’d instantly get nauseated if a plate of food was set in front of me. So he started creating very small, bite sized, pieces of food for me and only put one or two at a time on a saucer. For instance there might be two little 1 inch square pieces of a PBJ sandwich or a bite or two of Swanson’s Canned white breast of chicken, or he’d broil chicken and cut it in pieces and serve with a veggie. Sometimes it would be little Ritz crackers with cheese and chunks of apple, or a spoonful of hot dish or bite of burger. You get the idea. He brought little jars of baby food and Kozy Shack Rice Pudding. Rice Krispie bars and banana bread were also something I could tolerate. I didn’t do well with Ensure shakes but I could occasionally drink Ensure protein infused juice. I know, some of these don’t sound healthy but my dietician was adamant she didn’t care what I ate as long as there were calories going in. ☺️.

What finally helped to pack meat on my bones, Lactaid Ice cream~Salted Caramel. My husband made me smoothies and for some reason I could drink those and keep them down. There was enough protein, fat and sugar to help me gain weight. Little by little he’d introduce some protein powder into the shakes. That powder has a peculiar taste and even though I lost my sense of taste, I could still ‘smell’ it?

At some point I would think your son’s doctor would suggest a feeding tube. My doctor was going to this for me if I continued to have problems eating. Another person I mentor locally in my home town had a transplant last year and wasn’t able to eat either. Her doctor was concerned and requested a feeding tube for a couple of weeks to provide her with nutrients. It worked to get her jump started back to health. It could be a good option for son. With nutrition, his mental health should improve. It would be wonderful if he could get out of the hospital. That takes a toll mentally as well.
Has his doctor discussed appetite stimulants or a feeding tube?

Hi Lori I am newly dx with poor AML I have been on chemo 2rounds and in remission ru still having to do chemo after TP, I am a liver transplant patient also with the hope of getting a BM TP. I have a consult at Moffitt in Tampa.
My question to you are you in remission, how long did you stay in the hospital and if you don’t me asking what was your age. I am 63 in good health, My situation is a little complicated due to LTP. Ru on immunosuppressants meds if so what ru in. Thanks for any insight..

Good morning, @myfablife. Every time I see your @name it always brings a smile. I know right now you’re probably not feeling so fab after the chemo for AML. But it worked to bring you into remission which is really encouraging.

To answer your questions…I was 65 and in excellent health at the time of my diagnosis. It just clipped me off at the knees within three weeks time. With 3 mutations, my prognosis wasn’t favorable. For my induction chemo I was in the hospital 5 weeks. Then for another week every 28 days until I received my transplant. (8 weeks total)
My last chemo was the pre-conditioning treatment as part of the transplant process. There was no more chemo after that! I’ve been in remission for 5 years.

I’m no longer on immunosuppressants. Actually the only prescription I take is a statin. At the time of transplantation there is quite a regimen of medications to take. Because our immune system is seriously compromised we’re given a temporary immune system with antibiotics, an antifungal, and antiviral med, along with an immunosuppressant such as Tacrolimus. Eventually we’re weaned off all meds.

Having already had a liver transplant, I can understand how that may complicate the situation for you. That’s an area where I have no experience. But I do know that the entire bmt process, with the chemo and meds. can have an impact on the organs. So it’s reassuring to see you have a consult at Moffitt. This will require a facility with a collaborative team so that along with the bmt, your liver is also monitored. It’s not an easy journey but it is so worth it in the end. My adventure was almost 5 years ago…2 months to go and I’ll hit that big CELLaversary!😉 Now I’m 70 and feeling Fab!
Please keep in touch and let me know what you find out with your consult. How have you tolerated the chemo so far? Any issues with your liver numbers?

Lori you have brought me some encouragement for sure. Like you it knocked me to my knees also.
I like you am in excellent health that’s the reason I did so well with my liver TP. The only reason it was caught is bc I get labs each month. I was on a lot of immunosuppressants which I feel suppressed my system to much. “ of course Drs. r not agreeable to what I say.. “lol but I cannot dwell on that.
Since I have been completely taken off Prograf/celcept my liver numbers are perfect, kidneys are so much better. I am amazed. I never have had to take any medication until my LTP.
I have so far tolerating chemo/chemo pill. still trying to keep active, positive 🙏🏻 that I will have the same prognosis that you have been given so blessed to hear your fabulous news😊
I will definitely keep you posted, it’s so weird I had not been on the site low and be hold I saw this post.
Lori thank you again for your encouraging words.
This is all so new to me dx 3/18/24 started chemo the next day. It’s been overwhelming to say the least but I made it thru my LTP and did so great.
😊😊

You and I are much alike with being so fit and healthy. I never took any pills except vit D3. Before my diagnosis, at 65 I was walking 10 miles daily and had no shortage of energy…biked, mowed lawn, gardened, etc.. Then poof, there was a 3 week steep decline with weekly trips to my doctor who would tell me I was looking great and there’s nothing wrong. Even though I had an awful cough, sustained fever of 102, rapid weight loss, extreme fatigue and pasty white skin. I looked like death warmed over! AML is not subtle!
The 3rd week, my husband literally carried me into the doctor’s office saying, “My wife is not fine and she needs blood work because something is not right!” Later that day she called to tell me that the oncology dept at my local hospital is holding a room for me and I should get there asap. What?? So I asked what’s going on…to which she replied, “Apparently you have leukemia!” Well, mike drop for sure! Boom 🎤 Obviously she is no longer my primary care physician. LOL.

Your story is blowing me away! I didn’t think it was possible for organ transplant patients to stop taking Prograf or Cellcept! That’s amazing! So what a bummer to now have AML. Not sure if your previous meds had any impact on that or not. Many times AML is caused by a random mutation. As was my case…totally random event with no assignable cause. All of my hematologists (local and Mayo) concurred with that. I’d had a physical with blood work just 7 months prior my diagnosis and there wasn’t a hint of anything brewing. But once a mutation happens it can set the chain of events rolling quickly.

I’m so glad you saw this post. But this level of nausea is one of the more gnarly sides of transplant and not everyone has this happen. So if you are able to go ahead with the transplant I’ll scoot you over to this discussion:

~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

There are quite a few of us who have undergone this life saving, second chance with life procedure! So you’re definitely not alone in this journey. 5 years ago no one would have convinced me that I would ever feel this good again. But honestly, I’m back to 99% normal and feel like nothing ever happed. So if I can offer hope to others, that’s my mission in life now. ☺️

Lori wow I was doing the same as you always active never sat down. I just became extremely tired and like you so very pale looking, Yes have to agree very surprised your PCP did draw blood right away. Yes this disease is definitely fast to attack your body.
Well the chemo pills have some immunosuppressants in it and I am on low dose prednisone right now, I am sure I will go back on tacro again if I can get BMTP.
Again I am so very happy for you. I will definitely be following post.

Wokup I have recently been dx with AML, this all new to me.
I am sending you nothing but the best for your son to get better. He is so young , I cannot imagine how he is having to deal with all this.

@wakop -I am so sorry your son is going through this. I did not have a bone marrow transplant, but i had a liver transplant. After my transplant I was nauseous and the last thing I wanted to do was eat. Even though I did great with my transplant and my numbers were good, I could not eat and ended up back in the hospital for malnutrition a month later. The doctors put in a feeding tube through my nose and it was awful. I could hardly tolerate it. I had it in for 2 days and I made a deal with doctors that I would start to eat little by little. They wanted to keep it in 2 more days, but I could not tolerate it. That was enough incentive for me. I would eat small amounts and I started drinking some protein drinks high calorie high protein like boost. I ended up liking Premier protein better, but at the time I committed myself to drink 3 boosts a day and a little food. That was enough to sustain until I finally could start eating. After a transplant, for some people, food tastes like cardboard. It just doesn’t really taste like food. Maybe suggest a feeding tube for your son, it was really the only thing that helped me. Good Luck!!