Since I was diagnosed with Ricther's Syndrome, even of the more than eight doctors I visited, none used the word Ricther. All were really negative when it came to healing. Everyone told me they had no idea what could happen to me.
We are few who have Ricther, and we all need an opportunity.
when you say doctors-are you talking about regular MD's or actual hematologist/oncologist. I find as soon as i say leukemia-all my regular doctors froze up. just the way it is.
I'm sorry to hear this has troubled you.
Many doctors think that by not mentioning certain things, that they are being thoughtful and sensitive to their patients so please don't take it as any disrespect to you.
However, I can understand that it must feel as though your condition is not being fully acknowledged.
I have no answers for you and I hope you can feel that their actions in treating your Richter's effectively, as they have, speak louder than their words.
All the best
Jackie
Hi there,
Please don't let your experience discourage you. Treatment solutions for Richter's is very much an important topic and much research is being done to achieve those treatment solutions.
This is where access to the internet can be so helpful - it expands our world beyond our immediate environments. Unfortunately, having a negative experience when seeking solutions from a doctor is not all that unusual. However, it would be incorrect to assume that it provides a full picture.
A Discussion About Richter Transformation in Chronic Lymphocytic Leukemia with Tanya Siddiqi, MD, City of Hope
lymphoma.org/hope-from-expe...
What advice would you give to a CLL patient who develops Richter transformation?
I would tell them to learn as much about Richter transformation as possible and to not be afraid of asking questions. When a Richter transformation occurs, the patient’s specific situation will determine which treatment option would be best for them. Often, a stem cell transplant is the most indicated treatment, and getting familiar with the risks and benefits of the transplantation process is important. LRF is an important source of information. I suggest downloading a copy of their Understanding the Stem Cell Transplantation Process publication because it is a very comprehensive guide that will help answer many questions that patients may initially have. LRF also offers numerous resources that answer questions related to various other treatment options, the latest in CLL research, and ways to cope with all aspects of the patient’s diagnosis. In addition, LRF provides educational in-person meetings, teleconferences, a peer support program, as well as a very helpful mobile app called Focus On Lymphoma (FocusOnLymphoma.org). All these resources will help patients with lymphoma be well connected to expert information and valuable support.
I know this may be more difficult for you since English is not your native language - if you could find someone who could help you with the material, that would be a great help to you.
Research in this field has accelerated quite quickly and I wouldn't assume that every doctor - especially if they treat a variety of illnesses - are on top of what is going on.
Hope this helps~ hang in there!
All the best,
D.
Thank you very much for the information.
I see that they don't talk about Cart therapy in this article.
Precisely Cart Therapy is designed for mutations. Only 15% of the people who have survived were cell transplants, and it is not much.
It is not known what will happen with Cart Therapy. It is a new treatment and they expect it to be effective for the Cart.
I have been told that the Cart would treat me in case the disease returns.
What is important is to detect the Ricther in time and in this way there would be fewer cells.
Against fewer cells, it is easier to cure.
In patients who are monitored every six months, when they detect Ricthert it is already too late.
Detecting it in time would save lives.
Hi, I hope your day is going well. Do you see your Oncologist on a regular basis? So far I think I will see my Hematologist/Oncologist every 3 months with lab work. Just curious how often your Dr wants to see you.
After the referral, every three months I have a consultation with my hematologist. Do you have Ricther?
Yes I do, in remission since Nov 19 2019. I was thinking they would give me a maintenance dose of Rituxan every 6 months or so but apparently its not given for Large B cell lymphoma which is what I have.
I think it is because the prognosis is difficult and they don't like delivering bad news. When I was diagnosed (with Richters) I was told this is the diagnosis you don't want, when presenting with DLBCL and CLL. And I was told not to look at the prognosis calculators online because they were all so bad. I've su sequently been told the figures are quite out of date. Because Richters is quite rare the stats change slowly, but I believe treatment is improving.
I have a great paper with more recent stats I'll dig out and send you.
Buddababy
It is what I think, that the statistics are very old. Can you send them to me?
I have two friends who beat Richter’s with chemo only and a cousin who beat a transformation from follicular lymphoma (same idea, but not called Richter’s) also with chemo alone - RCHOP. Hopefully you both will follow in their footsteps.
My hematologist told me that R-CHOP could cure Ricthert. There are people who do not need a transplant and it works.
R-CHOP has saved a lot of people. Chances are high that you will be one of them. A friend I worked with was in remission after R-CHOP.
Dave
True for the three people I mentioned. I know that there are others, but these are people I know well.
My cll specialist Dr. Lamanna from ny prespeterian told me that it is curable.
I sure hope so!!! CAR T is my next best bet!!
Dave
When are you having Car t Dave? i thought r chop alone would've cured it.
The plan so far is they collect my cells this coming Wednesday and give them back on January 8th. 4 more weeks.
They did a PET scan and BMB after R-CHOP and no cancer was found. Not even CLL. Then they did a Stem Cell Transplant after that. 3.5 months later Lymph Nodes started swelling up on my neck. This cancer is very aggressive. Let’s hope CAR-T knocks it out for good.
Dave
Did you have nodes before starting the R-CHOP?
My case was very strange. No swollen Lymph Nodes, no normal symptoms of Non-hodgkin lymphoma. Only horrible pain in my right shoulder for 4 months. In the 4th month my right neck muscle started swelling up. That is when I was checked into the hospital for a week of testing and lymphoma was found in that muscle.
Your case is exactly identical to mine. No symptoms of lymphoma and the Pet came out clean. I found the Ricther cells by chance when I had breast tumors. Doctors say they found it by chance. If not for the breast tumor, they would have found it spread throughout the body.
David have you been told when you will know the results of the treatment? I saw that it could take a month to see the results.
I didn’t ask how long before I would see any results of treatment. Yescarta website says avg of 1 month with a range of .8 to 6.2 months. Even one month will seem forever when waiting but 6 months will be excruciating.
Dave
I have been reading articles and they say that in the first week if the patient has nodes, they disappear.
I have also been reading that the Hebron Valley Hospital of Barcelona already made clinical trials with Ricthert patients in 2018 and they were favorable.
I guess doctors give little information because they don't want to get ahead of events.
But I also saw that there were very few side effects.
Have you been told the type of chemotherapy they will give you?
David you are going to heal with the Cart. They have to heal you, because you are our hope. The hope of all.
Ok Dave we are all here cheering for you, u gonna come out of this and have a good life. Dr. Lamanna says possible treatment next year and I'm not gonna lie im really anxious about it, i think about that every day. And when I have to cry i just let it out. The unknown is the worst part.
I appreciate everyone’s support too. We also support you too and will be right behind you when it is your time for treatment.
Crying is ok. The unknown can be very scary however having good Doctors and nurses can help minimize this. You will do ok.
Dave
Thank you Dave please let us know how everything goes!🤗
What is the new treatment that will come out next year?
I meant possible treatment for me next year (1st time being treated)
OK, you mean for the LLC. There are many treatments and you can treat CLL.
Yes i know I'm just hate too take the treatment bc of the side effects so I'm dreading that day. Plus i didn't think i would need treatment this soon.
If it is Ibrutinib, it will not give you side effects.
There is new work being done for Richter’s transformation. Look at the CLL Society website with some new discussions.
CLLSociety.org
Be well,
Hoffy.
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