Update - CLL- RT- Breast Cancer- Myelodysplasia- Future Transplant

[Priss69]

Hello

I want to update my story.

In 2017, I was diagnosed with CLL and treated with Ibrutinib after six months.

Eight months later, in 2018, I was diagnosed with two stage 1 breast tumors and another stage 2. During surgery, biopsies revealed Richter's Transformation, which was later shown to be pseudo-Richter's, but they gave me R-CHOP anyway. When I finished chemotherapy, I began radiation therapy for breast cancer with hormone therapy.

In 2021, my CLL returned, and this time I was given Venetoclax. Right after finishing treatment, after two years, I had a complete workup for congenital heart disease. I have stage IV mitral valve disease, and surgery is impossible. While they were doing the tests for my heart failure, I started needing blood because I was constantly anemic. I needed blood every two weeks. They did a biopsy and found myelodysplasia. This was in early 2024. Now I find out that the treatment isn't working for me because it's very toxic. A study found that I had TP53 in 1% of my cells. The doctor told me to think about a transplant. If my third attempt at lenalidomide treatment doesn't work, I'd go for a transplant. They're already looking for a donor.

He's going to talk to the cardiologists to see if he can do the transplant. He told me the two-year mortality rate is 30%, but I'm still going to die if they don't do anything.

I'm terrified because I don't know if I'll be able to handle the transplant.

[Jm954]

I'm sorry to hear your news. Not sure if this is any help but I had a transplant at 67 two years ago. Before transplant part of the screening process was some specialist cardiac tests including an echo to measure ejection fractions etc.

As you know by now, post chemo myelodysplasia is very hard to treat and transplant is the best option if you are fit enough. I would go with whatever they recommend and I hope it all goes well

Jackie

[Priss69 in reply to Jm954]

They'll talk to my cardiologists to see if I can tolerate a transplant. My heart failure is severe and my life is in danger. The doctor told me he'd do a mini transplant. Have you heard?

[Jm954 in reply to Priss69]

They're also known as reduced intensity transplants which is what I had. For me the chemo wasn't too bad but the post transplant anti rejection drugs did a lot of damage to my kidneys.

I really hope they decide you are fit enough xx

[Priss69 in reply to Jm954]

The doctor told me he'd give me a very weak chemotherapy because he thought I wouldn't be able to handle it. How many sessions were there for you? I only had one chemotherapy session, R-Chop

[Jm954 in reply to Priss69]

I had 6 months worth of Fludarabine and other chemo that I can't remember on 6 consecutive days then the transplant on the 7th day. The anti rejection drugs started that same day and, for me were, in many ways, had worse side effects than the chemo. Mostly they were vomiting and tremors but we later found that it had ruined my kidneys.

A transplant won't necessarily cure your CLL but should at least put it into remission for a long time. Hopefully your MDS will be cured though.

Lenalidomide is not an easy treatment and I hope you haven't had any neuropathy with it because that can persist after treatment has stopped.

Please keep us up to date with how you are

Jackie

[Priss69 in reply to Jm954]

By the way, does the transplant also cure you of CLL?

[AussieNeil in reply to Priss69]

Bone marrow transplants still remain the best curative option for CLL. Your new bone marrow works to eliminate any CLL cells not destroyed by chemo. Transplant use for CLL has dropped considerably, now we have much better treatments that extend life expectancy, as transplant riskiness increases with age and CLL is an older person's disease. We have members who have successfully had transplants and a few currently going through them.

You are an experienced patient and specialists know more nowadays about how to manage patients through transplants. Ignore out of date data on success rates. Be very careful about managing your infection risk (keep a close eye on your neutrophil counts) and don't delay in seeking medical help whenever you have any concerns and you'll have a good chance of a CLL cure.

Neil

[Priss69 in reply to AussieNeil]

..Thank you very much for your advice. I will do so.