CLL Support Association
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UPDATE: Mom's CLL transformed to PLL

Hi All,

So the "No worries", "She can go 10 years without treatment" are in the past just 10 months after the CLL diagnosis. We are doing the bone marrow next week.

The doctor said that her CLL progressed to prolymthocythic leukemia. And Ibrutinib treatment only does not seem to be an option. I dont want to put her through chemo.

I am devasted. I didnt tell her she needs to do the bone marrow because I know she will be so scared. She lost her memory during an anesthesia and I know she wont accept another one.

Anyone with a similar progression, what treatment you required?

Please help me, I need more info to stay sane.

I try to act like everything is normal in front of her, but I just hide to cry my eyes out, I feel like I am dying. To see our loved ones suffering is so much more painful than bearing the pain yourself.

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My niece is on bendamustine rituximab .... it s very tolerable till now .... she finished 3 cycles and only little fatigue ...and some rash ......

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I assume it depends on the age and the aggressiveness as well. I so much hope she will be fine, but everything happened so fast. I am so so scared!

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If you Mom was diagnosed with CLL and she now has PLL that is a very rare Richter's transformation. Do you know if it is B cell PLL or T cell PLL.

I'm very reluctant to say more, but she will require treatment, probably soon.

I had a Richter's transformation 6 years ago, and have come this far. There is hope...

~chris

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My husband had conscious sedation for his bone marrow biopsy and it was fast and painless.....prayers for your mom.....she won't be put under that deeply if she chooses this path.

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I'm sorry to hear this news.

If it's T-PLL then Alemtuzumab is often used and in B-PLL it's often Ibrutinib.

Immunotherapy may be a good option to ask about if it's confirmed. Let us know more as and when you know.

Best wishes to you both

Jackie

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Sending you huge best wishes and hugs Paula because this is a tough time for you. It is indeed harder to watch loved ones suffer than to experience it ourselves.

Hoping a suitable treatment can be found for your mum but look after yourself too and take support and care for you too during this period.

Very best wishes,

Newdawn

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Paula,

Sorry you are having to deal with this. I have had two bone marrow biopsies and it’s easier for the person having it in an odd way ! I took a good friend and I held her hand ! Your mother will not see what is happening and lots of local is much easier than a general. It’s just uncomfortable for a short while.

Regards

Colette

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Hi Paula,

I'm so sorry you are going through this and I hope you are able to get some answers soon regarding next steps for your mother's treatment and care.

Big hug,

D.

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I hope it's not T PLL. I had several diagnoses and landed finally on B Cell PLL (confused the dr. at first with CLL markers) I'm on Ibrutinib alone. Chemo didn't work due to I had the chromosome 17 & P53 bad markers. I went to a dr. doom specialist that wanted to rush me into stem cell transplant, but my onc said 'what's the rush?' and let me try Ibrutinib first. Went from 400K- 500K WBC in the hospital, down so very slowly 10 months later to 76K WBC last visit. My initial terrible numbers and slow progress are in my profile. Aside from a bit of fatigue that slows my walk in afternoons, no one looking at me would know I'm treating cancer. I'm glad the oncologist took a conservative course and supported my decision. The specialist was known for stem cell transplants so I knew that specialist's recommendation would likely be to have a transplant. And it was the urgent recommendation given to me when they figured out my diagnosis. Scared me. But here I am going better without the transplant just on ibrutinib. I don't know how long it will last, but it gives me time to read this board and learn about other treatments and drugs.

Your mother needs to have a good long discussion of all her options, and someone to help her choose what is right for her situation. This is going to be overwhelming and stressful and emotional. If it's not T PLL then there may be other options to try . With stem cell transplants they told me there was an age after which they would not let it be an option. I forgot what age that was, but I'm far away from the cut off age.

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Thank you all!

We are doing the bone marrow next week and will update you.

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Yes caring and being helpless is so painful, tears seem to just fall whenever you think. Hang in there knowing your Mum needs your strength.

Come here if there is little other support in your world.

Warm hugs

Bubnjay1

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Sending you good thoughts in this difficult situation. May whatever is best for your Mother happen!

Virginia

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Terrible situation. They don't usually knock you out during the bone marrow biopsy. I've had 3. The thought of them is way worse than the actual biopsy. The worst part is when they stick you with lidocaine. Hang in there!!!

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So sorry to hear about your mom and your having to go through this with her. I know that it is very tough on loved ones from experience. Hang in there you'll both get through this with each other.

I have had two bone marrow biopsies with only local sedatoin and they really didn't hurt much. Like otheres have said the thought of them is much worse than the actual procedure.

My thoughts and prayers are with you and your mom...:)

Chris

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Prayers to you and your mom 🙏🙏

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So sorry for your mom. Please be confident - the biopsy is necessary, but she will only be uncomfortable. Others earlier have said that the anaesthetic needle is the one that hurts, but once it works, the biopsy itself is not terrible, and results is some discomfort for a couple of days. Then it will be ok again. The fear is worse than the procedure for most of us. Our prayers go out to you and your mom. Take case of yourself - she needs your support. Keep us informed if you can. Jay

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