Richter's transformation

[Priss69]

To all who have this terrible transformation, I would like to ask you how you are.

[Jm954 Administrator]

Are you still ok Priss?

Jackie

[Priss69 in reply to Jm954]

Hi.

Yes, for now. I talked to my hematologist last week and he said he would do another check in three months. He also told me that it was very difficult to cure and that discouraged me a lot. I told him about the new drug combinations to fight the Ricther and he told me that every hematologist treated the Ricther with the treatments he wanted. He told me that the Ricther was the great unknown to hematologists because there were few survivors. This group is where I saw more people who have Ricther and wanted to know how they were going with the new treatments.

I think the United States is more advanced than Europe with the new treatments.

I saw that they are dealing with the Cart now and that in many cases it works.

[Jm954 Administrator in reply to Priss69]

Press,

It’s so complicated and different for every Richter’s patient and that makes it hard to understand.

Many Richter’s patients are still having traditional chemo, the new drug combinations are mostly in trials.

But, the great news is that you have a remission and that is a massive first step to cure. It does happen!

Jackie

[Priss69 in reply to Jm954]

Thank you very much for the information I want to open a Facebook group with people who have Ricther. It is really difficult to find people who have this complication. I found people who had Ricther 12 years ago and they are still alive and that is a hope for many people.

[bachplayer13 in reply to Priss69]

priss: i'm at high risk for richter's i don't have it yet. i think dr richard furman is very very good. he is a doctor at weill cornell medical center in new york city. i may go to see him. if you create a facebook group for richter's i would love to join it. i recommend this video to you. i tried to put it up but seems to be an error now. go to the cllsociety on youtube it is there one of the most recent videos about richter's. it is about new research on richter's done at weill cornell. md anderson in houston texas is very good cancer center one of the best and if your english is a problem they may have translators to help you better understand your treatments. best wishes for continued remission!

[Priss69 in reply to Jm954]

I suppose that now that I am in remission, I am panicking for a relapse. Living with the idea that tomorrow you can get up with an inflamed ganglion is scary.

[BoomrangSuj in reply to Priss69]

Hi Priss69,

I too had Richter's, so I can empathize with the constant apprehension about recurrence...

I have a few thoughts on this topic:

1. Those who have 17p deletion or other high risk markers will always be at higher risk of Richter's. Having Richter's once doesn't increase your risk anymore, at least in my understanding. Furthermore, RCHOP worked in your case (did not in my case), so you will have that option still in case you have another transformation.

2. Chris (cll_canada) had Richter's about 10+ years back and recovered. He never had Richter's again, though he passed away last year because the underlying CLL and complications could not be resolved.

3. The lifetime cancer statistics are staggering (bestlifeonline.com/lifetime.... 1 in 2 for men and 1 in 3 for women! So guess worrying about relapse/recurrence is not that much greater than worrying about getting cancer. However, the survival rates keep improving every year. That is the good news!

Guess till we or a loved one has a cancer diagnosis, we all live in blissful ignorance. You and me and the rest of us on this forum are now acutely aware of the risk and cannot wish away this awareness.

I cannot speak for everyone, but I think we all develop some sort of a coping strategy. That helps reducing the worry.

The worry I felt at diagnosis perhaps was greater than the worry I felt at stem cell transplant. This is because I had a greater understanding (this forum helped as much if not more than what the learnt from the doctors or from reading medical journals), and that understanding helped me feel more at peace if not in better control of my feelings.

Some find greater strength in their faith, most develop deeper bonds with their partner, family and close friends.

Our priorities change, and I suppose in a perverse way, our joie de vivre is enhanced!

I read about your African trip, so I think you too have the same perspective!

The fact that you are starting a Richter's group on Facebook also shows that you are being proactive about life going forward, and not just passively accepting whatever comes your way. I think you are very brave and are tackling your situation very well!

Will the worry ever go away? I don't think so.

Is there a greater reason to worry post Richter's? I didn't find it to be so.

Your choices and decisions will be more limited (stay on meds and hope for prolonged remission, transplant, CAR-T), but again I found that this narrowed scope, kind of focused and grounded me and reduced my generalized worrying as compared to the W &W period.

There are many others on this forum who have lived through Richter's, have high risk markers, underwent transplant (and some even had CAR-T). I found that reading their posts helped me manage my worries and get a better understanding of what to expect. Some on here seem to have as good an understanding as the doctors, and they are better at explaining the issues as compared to the doctors! At the very least, reading the posts helps me ask pertinent questions about my treatment and care at the doctor's.

In my opinion, get a clearer understanding of your underlying CLL (is it progressing, stable, in remission too?) and the treatment options available to you for the CLL. I think that understanding will help with - and certainly will be more productive than - worrying about recurrence of Richter's.

I would love to be part of your Richter's group, and happy to share my experience with those interested, while learning from the collective forum...

Till then, as the songs go - Don't worry, be happy.

Que sera sera!!😁

[Priss69 in reply to BoomrangSuj]

You left me stone.

I pass you the group for private.