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

Hi!
I was diagnosed with follicular non Hodgkin’s lymphoma 3 years ago at 57. I had an enlarged lymph node in my neck. For that particular diagnosis there is no treatment that is needed right away. The oncologist just arranges frequent blood tests and takes the watch and wait approach. It’s a slow growing cancer. However, after the first year I developed another type of cancer- Acute Lymphoblastic lymphoma (a lump on the roof of my mouth developed over night)- a very fast growing cancer. So I basically had 2 types of blood cancer. They treatment needed was very extreme chemo and after that I would need a BMT. This treatment took 2 years. I just got my BMT in January. I came through it without too much GVHD. I had some body aches that were pretty bad that lasted 1 week and some sores in my mouth that did not help with eating! I lost 30 pounds pretty much muscle. I was in the hospital for 5 weeks. When I got home I was extremely weak but so happy to be home and not hooked up to any IV machines. Freedom helps a lot in recovery. It’s a very long recovery that is hard on our loved ones. The reality for the patient is that it is a lifetime of recovery really- with the threat of relapse and GVHD always an issue. Just as I was feeling more energy and a returning appetite (in July) I developed some chronic GVHD issues. It started with my skin- I started to get spots that itched on my abdomen and back and eventually down my legs. I started putting tacrolimus ointment on them - after 4 weeks they have slightly faded and are no longer itchy. They haven’t gotten worse but they are still there. I stopped putting the ointment on. I also developed new mouth problems. I have really sore gums, dry mouth and little pimple like bumps that hurt like hell. Thus making eating and swallowing very difficult. I’m still on my immune suppressant drugs but next month I’m probably going to be weaned off them. I think with the kind of cancer that requires a BMT it’s difficult for the patient and family/friends to understand it’s a very hard and difficult road - physically and emotionally. As with other cancers you can go through surgery/chemo and be cancer free. But with a BMT it really is a lifetime of unknown. You can develop GVHD at anytime… even years down the road. I get a little irritated with my husband asking how I’m feeling- especially if I’m having a bad day. The worst is he wants to know I’m getting better so I’m constantly getting the question “how are you… any better?” I don’t want to think about that question every day. It’s so hard on those we care about and there really isn’t too much you can do. I think just acknowledging the fact that they have been dealt a very bad hand is all we need. Someday they will wake up with more happiness, energy, and Hope fore a future. Until then … lots of ice cream ❤️

I’m in the same situation as you are - I have skin GVHD on my stomach. It’s under control now, and I give Jakafi all the credit.

I agree that GVHD is so unpredictable. I find that intense stress sometimes triggers it for me. It can affect my hands where I can’t even hold a pen or make a fist.

My family knows that I have ups and downs, and supports me during those rough days. Distant friends and acquaintances are surprised that 7 years after the transplant I am still dealing with the aftermath. I get reactions at work sometimes and I can see it in my coworkers eyes, like they question whether I am exaggerating. I look completely healthy to them. Sometimes I feel like it’s not even worth it having to explain my condition to them. I just keep it to my self and act like everything is fine.

I’m in the same situation as you are - I have skin GVHD on my stomach. It’s under control now, and I give Jakafi all the credit.

I agree that GVHD is so unpredictable. I find that intense stress sometimes triggers it for me. It can affect my hands where I can’t even hold a pen or make a fist.

My family knows that I have ups and downs, and supports me during those rough days. Distant friends and acquaintances are surprised that 7 years after the transplant I am still dealing with the aftermath. I get reactions at work sometimes and I can see it in my coworkers eyes, like they question whether I am exaggerating. I look completely healthy to them. Sometimes I feel like it’s not even worth it having to explain my condition to them. I just keep it to my self and act like everything is fine.

Hi @jenmkr63 It’s quite amazing what our bodies can go through and overcome, isn’t it? From experience, it can take a good year or so to start feeling appreciably better…to the point where you start believing! Finally being off all the meds also makes a huge difference.

I was on my immunosuppressant for 2.5 years and with that I was also on 2 antibiotics, antifungal, antivirals and other meds until I tapered off the Tacro. That went up and down a bit and then eventually off. I did start my vaccinations before that though, which is important. Compared to what I went through, I really thought I felt great! But when I was finally off everything, wowzeeee. Game changer!

I know the irritation you feel when people keep asking, “how are you” every day. You simply don’t know! My husband did that too and I tried to not get impatient with the daily question. It’s so difficult to get across that some days are stellar and then we over-do…the next 3 days it’s all you can do to drag your bones out of bed in the morning.
It gets better!!! Your first year is the toughest so just keep doing and listen to your body. Four years later, I feel like nothing ever happened.

In regards to the tacro ointment. It wouldn’t hurt to keep up with the daily applications for awhile. I was told to use it for weeks beyond when the area healed. It works slowly but does wonders for keeping the inflammation under control.
Did you mention the sores in your mouth to your bmt team? There is a great steroid mouthrinse called Dexamethasone. (Picture below) The instructions are to take .5ml Am and Pm. Rinse for 30 seconds only, then spit it out. It’s amazing how well it worked on my mouth sores.

I also needed to use the tacro ointment off label and apply it to the areas on my tongue. It can be taken concurrently with the Dexa mouthrinse. Talk to your doctor! You don’t have to suffer!
We have been given a second chance with life. Yes, it comes with some potential side effects and risks. But we are here! We’re living our lives and for me, I’m relishing every day.
The keys are remaining flexible, keeping sense of humor and having a sense of adventure. Because no two days are alike. 😅

Forgot to ask- What helped you get over the skin GVHD and how long did you have it?

Hi!
Thank you for your advice! I am using the dexamethasone oral solution and the ointment but so far it hasn’t really helped much. I’m glad you had success with it so I’m encouraged to keep using it. I use Triamcinolone Acetonide dental paste as well. Some of the spots on my tongue went away but the sores in my mouth are taking longer. 😊

@loribmt

Yes Alex is on Fluconazole as well as Posaconazole and Vancomycin. They already took him off the Ursidile.

Good morning, @leilab1! I’m hoping you have some positive news about Alex. How’s he doing? Was he released from the hospital setting and at the recovery lodging with your husband now>?