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

Thank You for the picture of "your" rainbow. It is a symbol of hope for me. God Bless!

I too am an AML survivor and thriver! I celebrated my 3rd rebirthday in July and I am doing great! I went through a lot of the things your son is going through - nausea, fever, infection in my port. Eight days after my transplant, I was hospitalized for 12 days so they could give me fluids and get my fever down. The Protein shakes that Mayo nurses made for me were great so I made them at home. I also ate a lot of applesauce. But I got through it and started rebuilding my strength. Now I golf and play pickleball, and enjoy other activities just like a “normal” person! I hope your son can get through this difficult time because there is hope for a normal life on the other side! 🙏

Lori,

I had a BMT in 2020 to treat AML. In an attempt to be helpful to other people, I wrote an account of my experiences, with a focus on lessons learned. If anyone asks, I can probably find a way to make a PDF file of it available online, although I might need some suggestions about how to do that.

When I started treatment I was within 8 days of my white blood cells reaching a fatal level. I am still alive 3.5 years later, so I might have done something right. The Appendix contains a list of lessons learned. Here is the short version:
Reach out to everyone you know for help.
Do what your doctor wants you to do.
Hang on to hope.

I hope this helps. If you have questions I can try to answer them.

Hi @tim347. Your story with AML echos mine. We’ve gone through quite an arduous journey to get where we are today. I read that you had a relapse so I’m relieved to hear that you’re doing well on the meds you’re taking.

Thank you for sharing about your PDF file of your journey. I also don’t know how to post that but will check into it.
In the meantime please feel free to keep jumping into these conversations as the questions arise! It’s so important for those of us who have overcome and endured these experiences to become someone else’s survival guide. ☺️

I’m so happy you found our forum where you can share your story. If interested feel free to jump into these conversations!

~Chronic GVHD ~ Let’s talk about it!
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/

~Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

Do you have any chronic GVHD?

Hello @leilab1. Just thinking about you today and hoping things are improving with your son’s condtion after transplant. We moms never stop worrying. Sending you a warm hug.

Hi Laurie!
Thanks for the hug and support! My husband and I did see Alex over the weekend. What a difference a day makes. When we arrive to see him Saturday he was sleeping and hardly spoke. We watched him sleep for more than 2 hours. Sunday when we arrived he was actually sitting up in a chair with the shades open and eating a little bit of yogurt. I was jumping for joy. His ANC is now at 260 but white blood cells haven't caught up yet but are slowly increasing. He is still having fevers from his fungal infection but the fevers are 100° or below which is a huge improvement. He actually texted friends on his phone for the first time in 2 weeks. Thank you for your prayers and support. I think that's what got me through the weekend. Warm hugs!

One of the things I have noticed is that my doctors all seem to have different personalities. When I was first admitted to the hospital for treatment I talked with an oncologist. We talked about my wishes regarding an advance directive. I told him that I thought it would be a fate worse than death to be in a comatose state for weeks or months, or even worse, to be conscious but not able to communicate. He told me, don't worry; whatever will happen will happen a lot faster than that. That actually helped.

Another oncologist in the hospital who was concerned about my condition told me that he would pray for me. That was the last thing I wanted to hear. I told him that I would prefer that he think for me instead.

My transplant specialist had a way with words. At the informed consent meeting when he described the possibility of a reaction that would cause itching, he said that I might itch like a chimpanzee with fleas. He also told me that a bone marrow transplant was biologically implausible; it was against the laws of man and nature.

After the transplant I asked the doctor how long my GVHD reaction would continue. He said, sorry, I left my crystal ball at home.

This is wonderful news to hear that Alex is finally seeing some improvement! 💕 Those first few weeks of transplant can feel so tenuous to all involved. I had a few of those moments too. Fortunately, our transplant teams have seen it all and ready for any contingency.
It’s really an encouraging sign that his fevers are now under 100; A good indication that his meds are working and his blood numbers are increasing. And if that isn’t reassuring enough, then seeing him texting friends for the first time in 2 weeks seals the deal! He should have steady progress ahead.
I bet you’ll have a much more restful sleep tonight. Thank you for the update and keep me (us) posted! Hugs!

The hospitals infectious disease department revealed that Alex's fevers are being caused by a fungal infection that took hold in his central line. Because the central line was contaminated, they had to remove it and install peripheral IVs. It's day plus 23 and has ANC is now at 260. The small upturn in his health has been a huge relief for both my husband and I. I know there will be good days and bad days but the upward trend in blood counts is tremendously encouraging. Thanks for your continued support and thank you for sharing your journey. 💞

I had to laugh about the doctor who left his crystal ball at home. Next time you should ask if he brought it with him to work. I agree that it’s hard to predict how long GVHD flare would last, but the doctor should have observed enough patients with that specific GVHD to give a better answer.

I would have liked for a doctor to pray for me when I was going through my transplant. This just shows that we are all different, and what would be meaningful for me wouldn’t be for you.

I also had a lot of different doctors since I was diagnosed with AML in 2016. Moving to different states twice since then didn’t help either. For me, it’s important to have a doctor with many years of experience with blood cancers and transplants, someone who listens, answers my questions, explains well what I am experiencing and proposes a course of action.

Most of my oncologists have been top notch. I did have a young oncologist three years ago who ordered an unnecessary biopsy that resulted in me needing a thoracic surgery to treat the biopsy infection that could have killed me. He didn’t listen to me when I told him that the growth wasn’t new and was previously evaluated by another specialist.

Anyway, this unfortunate experience led me to connect with Mayo Clinic and now I have an excellent doctor.