Continued Journey

[FiArt12X]

The saga continues. I’m 7 months out from my Bone Marrow Transplant. After 100 days I reported BMBiopsy results showed no apparent cancer and the abnormality B-COR had been determined by Mayo Clinic to have been irradiated. Back flips, cheers and elation!

However, as I have reported many side effects have kept me from progressing as quickly as I thought I would. A full body rash, Graft Vs Host Disease (GVHD) developed early. I’ve been dealing with edema off and on for the entire recovery (gained 20lbs in two weeks at one point). The most severe symptom has been GI distress. Many of you experience this with medications used to control CLL. They have been working tirelessly to try to figure out if mine is GVHD, Colitis, or something else.

It has been a real grind. My BMT finally set me up with a GI specialist. They assured me they would get it figured out. It may take awhile 3-6 months but they were confident of an assessment/answer.

I just had my second colonoscopy today. I had a CAT-Scan Tuesday (2nd). I’ve had multiple fecal samples provided for various specific tests, and a PET scan. My BMT Dr. called last evening to inform me they noticed some enlargement of lymph nodes in my abdomen that had a “let’s keep an eye on those”. So another quick PET scan is now being ordered and a possible BMBIOPSY.

Oh happy days! As much as this is discouraging to me personally, objectively I have medical care that is all over my condition and acting quickly. And there is the big picture of I feel pretty good and on the top side of the grass.

Again, I’m reporting on one person’s journey through a BMT. Anyone else that gets to this treatment/ point is at a last resort situation. You could have much better post transplant results. Not many alternatives exist. I’m alive and physical able to do a lot.

All my best wishes to those of you in treatments you obtain great results!

[BigfootT]

I do hope you start to see more positive results soon. You've certainly been through a great deal. I just started at Mayo, Rochester this week. What a well run machine. You're in the best hands. All the best, Bigfoot

[FiArt12X in reply to BigfootT]

Thank you Bigfoot T, I will be extremely happy if the enlarged lymph the found in my abdomen are not cancerous. Of course they may have to o a biopsy of one and a Bone Marrow draw. (Double figures on my BMDs)

Thanks again for the positive thoughts

[Homebody123]

Wow you are amazing! I really hope they get your gastro issues sorted and you continue to improve.

[JerrysGirl3]

you are going through so much with a great positive attitude! I admire you so much❤️❤️❤️❤️ Keep on keeping on 😁😁😁❤️

[Thursday45]

Good to hear that progress is on-going. Such a hard journey for you but you are doing so well. I think we can all learn from your positive attitude. What a wonderful medical team, too. I wish you a continued recovery.

[Jm954 Administrator]

I'm sorry to hear that your GI issues are so debilitating, I hope they get on top of it all soon. Likewise with the enlarged LeNs, I hope they are simply due to your GI issues and nothing to be concerned about.

Sending the very best wishes, Jackie

[Poodle2]

Really hoping for a positive update on your nodes and that they do figure it out soon. Thanks for your update, I admire your mental and physical endurance ❤️🙏🏻❤️but like you said, there isn't much of a choice but still ❤️stay strong and well.

[BeckyLUSA]

you have a great attitude. Hope they get the GI issues sorted out soon. They can be areal quality of life issue!

[DoNorth]

Lots of admiration for you. In the back of my mind, I'm wondering if I should've gone for SCT earlier, but I've always been too afraid. Completely understand the GI part. After my latest relapse with 95% BMB infiltration, the GI problems were non-stop. Completely debilitating at times. Stay strong.

[Champlain]

For me, full body rash going on for 15 months, which developped after only half of my 2nd treatment with Venetoclax and Ritoximab. At this time, no one (Oncologist, Dermatologist) can figure out what caused it. Still wondering if it will ever go away.

[FiArt12X in reply to Champlain]

That is terrible. They’ve tried steroids? I’m really sorry if they did and it didn’t work. Our medications and complications to this disease are so individual it makes it really tough. They see many things that are common and will be resolved quickly. Your rash I hope finds someone to resolve it soon.

[SofiaDeo in reply to Champlain]

It's likely from the rituximab, which has the highest incidence of rash of all the MABs on the market I believe.

[DanBro1]

It sounds like you are doing well, with a couple of little bumps in the road. May your positive progress continue!!

[FiArt12X in reply to DanBro1]

Thank you encouragement always accepted!

[Newdawn Administrator]

Good to hear your update FiArt. As you know, I’m following your progress with interest and encouragement. You’re hitting some major bumps in the road but overall the BMT sounds to be successful. It’s not a treatment for the feint hearted!

Keep on keeping on with strength and the overwhelming support of this community.

Newdawn