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.

[BigfootT]

Words cannot express how sorry I am you are going through this. Thank you for sharing your story and I wish you nothing but the best. Bigfoot

[Poodle2]

Hey Priss, I was wondering how you were doing...I actually cannot imagine how terrifying this must be, sorry you are going through this. I really hope that you can go ahead with the transplant. Like you said, the transplant itself is very scary, so many people on here have gone through and it seems like a very hard journey...but...it can be a very successful one at the end...knowing myself, I would try to focus all my energy on the outcome. I'm sending you a big hug, I hope you can get through this just like you got through everything else so far ❤️🙏🏻❤️

[Priss69 in reply to Poodle2]

I've had a lot of treatments and cancers since I started with CLL. The problem is that I'm in stage IV heart failure, and I don't know if I'll be able to handle it.

[BigDee in reply to Priss69]

Hello Priss69

I too was wondering how you were doing. I recall when you were going through the RT. I am sorry to hear of your heart issues. I can but give you my heart felt blessings that you work your way through this latest trial. I look forward to hearing good news on your behalf. Blessings.

[CLLerinOz Administrator]

It's really good to hear from you, Priss, although I wish, for your sake, you were going through an easier time. I hope that, very soon, you will see the start of an uptick in your fortunes as your doctors work through what will be best for you.

CLLerinOz

[Priss69 in reply to CLLerinOz]

I'll keep the group updated so everything is recorded. It's important for other people to read my story.

[Stamphappy]

Priss69, God bless you, give you strength, guide your decisions, and ease your thoughts. I can't imagine what you are feeling. I am sorry you have been through so much. You are so kind to share your story with so much on your mind. ❤️ . I do not have experience to share, but I hope it helps to know you and your health team are in my prayers. Sending hugs and positive thoughts!

[hope-73]

Dear Priss, I really hope you can go ahead to have a successful transplant. 🙏🏼💪🏻❤️

[SofiaDeo Administrator]

I am so sorry to hear this. I can't imagine how you must be feeling.

[spi3]

My heart and prayers are with you. Yes,please get an appointment and a second opinion from a cardio-oncologist.

[Priss69 in reply to spi3]

The cardiologists were the ones who treated me my entire life in Barcelona. They treated me in France, where I live, but now I've returned to Spain for treatment, and the doctors have known about my condition since I was little.

[spi3 in reply to Priss69]

So releaved you have the best team of experts - you are in my prayers

[Mystic75]

Hi Toni,

While it was so great to see your post pop up, I am so sorry you are dealing with this - but am grateful you decided to update the forum.

Please continue to keep us updated - it's totally understandable why you would feel terrified. Sharing what you're going through with the forum may help in some way.

Sending you positive thoughts and prayers ❤️

D .xo

[Priss69 in reply to Mystic75]

...I want you to know where all this is leading. Sometimes I struggle to write because I don't want to break bad news, but it's the truth.