Richter Transformation - Update

[Priss69]

Update on cases of the Ricther Transformation.

A year ago I formed the Transformed Ricther group to be able to focus only on these cases, since there are few in the world, but every day there are more.

Of all the cases that entered, there are already 124 members, of which I think about 80 will be Ricther's transformation. Not all share their cases and only read the comments of others. In this year four people have died, being three deceased in December. Three deceased people were not treated and died within weeks of being diagnosed. They were diagnosed very late, in a very miserable condition and without the possibility of being treated due to their condition. On Christmas Day our dear Angelo died, who was also diagnosed in very bad condition and he did go through different types of treatments and as a last resort he was treated with the Car-T. No treatment was effective and in the last control they detected a new cancer in the liver. He went on palliative and died three days later.

The other cases are people who follow after a year some, by transplant from a donor in remission. The case of the person who has been in remission the longest is five years.

There is a case that came in this summer where it seemed to have the Ricther in the ganglia of the neck. They are treating him with the R-CHOP and they did the control Pet Scan and he still has remains, so he did not go into complete remission and is going to undergo a transplant.

We also got a very young boy, he is currently 24 years old. Very aggressive CLL and Ricther transformation. He is currently going to be treated with a donor transplant.

A curious fact is that all the people who have been diagnosed with Ricther, took at the time of the transformation Venetoclax 80% and the rest Ibrutinib being 20% ​​Pseudo Ricther and the rest Ricther.

Also a curious thing is that the success of the treatments is that it is detected in time and located. If detected early in the disease, the success of the treatment working in the first year is 99%.

Also a curious case is that people who have Ricther their CLL have been very aggressive with which there are more possibilities of a transformation.

Another curious fact is that many people enter because the doctors before the biopsy have already confirmed that he has Ricther. When you ask about his symptoms and treatment and the events of the last month, we know from statistics that he is no longer a Ricther. No symptoms and only lymph node growth in a very fast way. When you ask them if they have been removed to biopsy the treatment, they all say yes. Large parts of these people do not have a Ricther, but by withdrawing the "Ibrutinib" treatment, they are temporarily transformed into a Ricther.

A hug family from CLL and Ricther

facebook.com/groups/1002255...

[stewie]

Hi priss69 thank you for the up date Wish everyone on the site , the best of luck . Is there any promising new treatments in trials at the moment ??

Take care and stay safe

Stewie

[Priss69 in reply to stewie]

Hello

The last thing I know is that apart from the transplant of cells or donor, then there are the Car-T. Within the group there is no one who is dealing with Car-T. Angelo, who died this Christmas, was given the Car-T as a last resort but it was too late. His Ricther had it spread all over his body and in the end it went to his liver. I know that there is a combination of treatments that works but only temporarily for those who do not have a transplant and are looking for a way to get the Car-T. In Ricther's case, they don't give everyone Car-T's, due to treatment failure. I know of a very young boy, 42 years old in Germany, whose transplant has not worked for him and is temporarily on a combination of medications to put him in remission, while he looks for a way to finance the Car-T. In Germany they do not want to be done and he is looking abroad where they can give him the Car-T. He has put his house and his parents up for sale and they are asking for donations to finance the treatment. It seems unfair to me that we Ricther patients do not have the same opportunity as other patients with lymphoma, just because it is a mutation.

[holly2]

To be honest, I did not know about this rare condition until just before Christmas when I had to have a lump in my neck investigated and then came across Richters which seemed to fit my condition. I was mightily relieved when I had the lump looked at by an ENT consultant and then ultrasound and found out it was only my carotid artery! (Although I would like to know why it is bulging like that!). Massive relief I can tell you. I feel so sorry for anyone diagnosed with Richters and hope that new drugs are found that are more effective in helping people recover from it.

[Priss69 in reply to holly2]

I hope it is nothing your problem. I have a very painful ganglion under my jaw and that part of my neck is very stiff. Indeed the worst thing that can happen to you is a Ricther. You sure do not have it because it advances very fast.

[Big_Dee]

Hello Priss69

Thank you for the update, very informative. I am concerned because I had very aggressive CLL, but I am now in almost 2 years remission With B+R treatment. Blessings.

[Priss69 in reply to Big_Dee]

I am very happy. Now pray that you are in remission for as many years as you can. I have a friend who has been in remission for eight years.

[Smakwater]

Priss,

Your interest and sharing of information with regard to Richter's is an offering of Hope.

Your group having grown to 124 is also an encouragement. It is efforts like this that provide awareness that increases probability for interest in focused medical research, (AKA Advocacy).

There is such a great need for research interest in this area. I hope the growth with your group increases, and that the voices of those challenged with Richter's are heard so as to inspire a research dynamic within the medical community like what we have seen with CLL.

I wish you good health and success. Keep after it.

Thank You,

JM

[Priss69 in reply to Smakwater]

That's the idea. To be able to help science. If any of us lose the war, let us at least get something positive out of all this.

[Mystic75]

Toni,I'm so sorry about Angelo and those that have been lost.

Thank you for the updates and making your Facebook page available as the forum continually increases it membership so it will increase its exposure.

And thanks for all you do. You are a very, very special human being.

💕🙏

D.xo

[Priss69]

Unfortunately today I was informed that our friend Kenneth Anthony Rosplohowski died at the age of 53. After finishing the transplant, the Covid caught and killed him in days. This reminds me a lot of Dave who died in March from Covid, after undergoing Car-T therapy. A shame We have to continue fighting with the same strength as those who left.