Richter's Syndrome

[ishudderz]

Just diagnosed. I'm 46. Have biopsy tomorrow to determine treatment options. This is really freaking me out. Is this really a death sentence? Need feedback from others that have gone though it

[Jm954 Administrator]

I'm sorry to hear about your probable Richter's Syndrome.

A biopsy is the first step to getting a definite diagnosis and, from there, determination of the right treatment.

Richter's is serious but it is definitely curable and you are young which is in your favour. I'm not sure from your previous posts if you have ever had any treatment, other than Rituximab which can influence treatment. Your CKD may impact on your treatment doses depending on what is decided but you have every chance of beating this.

Please let us know how you are and what is happening.

Very best wishes

Jackie

[ishudderz in reply to Jm954]

I've never had chemo before. I just got the node biopsy there were complications. I had two hematomas during the procedure so they had to open me back up twice and have a tube in me. It's very scary. Now I'm waiting on results and trying to control this pain

[Jm954 Administrator in reply to ishudderz]

I’m sorry you’re going through this with all the complications and uncertainty it brings. We’re with you though, we understand and you’re not alone. People are cured so don’t feel it’s hopeless because it’s not.

Let us know the biopsy results and we can support you

Jackie

[KAS8]

Diagnosis is life shattering but you have to know that there are amazing noval meds out there. Chemo is no longer the only option and medical advancement is unbelievable. Hang in there! X

[Eucalyptus22]

I've just been through this stage and start Acalabrutinib on Monday. I was freaked out too as they did the biopsy and then PET scan as they thought Richters Syndrome. Thankfully, it wasn't but it certainly messes with your head.

Even if it had been, from what I'd read, there were still options .

There are lots of treatments nowadays and I feel incredibly lucky to be starting Acalabrutinib and start to feel well again.

Good luck with your journey.

[Sepsur]

From my experience, remain hopeful despite unnerving evidence to the contrary. I was biopsied around mid June this year, all 3 biopsies confirmed RT, by the end of June & a PET scan later, it had spontaneously transformed back. Why do I use term ‘spontaneous’ - from the end of May to the end of June, I was off ibrutinib, yet my RT had already reversed. I then resumed I & V.

[ishudderz in reply to Sepsur]

That's such a crazy story. That enough to make a person lose their mind!

[Priss69 in reply to Sepsur]

It was a consequence of the ibrutinib.

[ishudderz in reply to Priss69]

What was?

[ishudderz in reply to ishudderz]

Oh nevermind.... I see

[Priss69 in reply to ishudderz]

The transformation to Richter when Ibrutinib is withdrawn for a few days. When you take it again, it returns to normal.

[Hoffy]

Sorry to hear that. The CLL Society web site has a lot of good information,

Be well,

Hoffy

[Hoffy]

Are you see a CLL / RT expert? Are you going to a major cancer center?

Be well,

Hoffy

[olyocl]

I had R-chop treatment December 2017/April 2018 for Richters and my initial reaction was horror, but treatment was not as bad as I thought.

[Priss69]

What have they told you? quiet is NOT death. Enter the group where all of us who have Ricther are

facebook.com/groups/1002255...

[ishudderz]

Sorry to have just dipped out if the conversation. Actually as others have stated on here, I was now told I do not have Richter's. That's good news but I can't help but be angry for the two weeks I thought I was dying and the huge scar left in my neck.

i am being told to start ibrutinib. I'm scared of this also. I don't know that I trust it. I don't trust my oncologist. He's not a hematologist, not a specialist my insurance hasn't given me any good options for doctors in my area now that I moved.

I saw my oncologist yesterday. He had mailed me the ibrutinib last week and assumed I would begin taking it. But he never even discussed the drug with me at all. When I brought him a list of my concerns he told me basically to stay off the internet and not worry. And to start the drug immediately I guess I need my hand held a little more than that I'm just uneasy about it. All I know is that I left his office feeling like he's irritated with me and impatient with me. I hate this.