Richter Syndrome: Hello Everybody, My... - CLL Support

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Richter Syndrome

Bee4028
Bee4028

Hello Everybody,

My boyfriend was just diagnosed with Richter Syndrome about 2 hours ago. Those have been 2 hours where I have felt myself losing my mind! They told him not to google anything in regards to the diagnosis as they are doing more tests. Of course, I didn’t listen! Everything I have read has been certifying death/expiration date on patients. It wasn’t until I found this community that I have found a sense of hope. I want to thank all of you. Everyone that has posted or responded to someone else. I can’t describe the relief I feel that I don’t have to be alone in this. I just had to write this to not only thank you all but to ask of your experiences in regards to this diagnosis. Online is no help and there is no other way I can educate myself on this without alarming my boyfriend. He has Cancer in other areas and this new diagnosis is emotionally just too much for him. I am his rock...but blow after blow I just don’t feel strong enough to falsely give him a smile and cheer him up. I need your strength and honesty in order to propel forward. I appreciate you all.

30 Replies
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AussieNeil
AussieNeilAdministrator

Richter's Syndrome/Transformation is indeed a scary diagnosis, but we do have survivors in our community. Promptly treating it provides the best outcome, but first you need proper diagnostic testing which must include a biopsy of the swollen node(s) to confirm the diagnosis and determine how/whether the transformation is clonally related to the primary cancer or de-novo. Survival chances are quite different.

If you can provide more information on your boyfriend's medical background, then those who have survived and more knowledgeable members than me can provide you with better, more current information than what you'll likely find using Google. First off, does your boyfriend have a CLL diagnosis? If so, what's been his treatment history. I ask this primarily because there's recent recognition of what's being termed 'Pseudo-Richters'. This 'pseudo transformation of CLL' can occur when someone on Ibrutinib goes off it, e.g. for surgery, particularly if they haven't been on Ibrutinib all that long. Even a biopsy can indicate that the transformation is Richter's Transformation, but when Ibrutinib therapy is recommenced, rapidly swelling nodes, etc resolve. Unfortunately, some with 'Pseudo-Richters' have even had unnecessary treatment with R-CHOP. See: healthunlocked.com/cllsuppo...

Neil

Hi Neil!

Thank you so much for your response. We don’t know much else about his diagnosis. Further tests are being conducted. All we know at the moment is that it is rare and there are special hospitals that can treat him. The best is located in Germany (we are from NJ). Currently, he looks super healthy. If you didn’t know what he had you would have no idea what his body is going through. Im hoping and guessing that is a good sign (?!) he does appear to have a swollen node around his neck. But other than that, nothing else. He is currently having radiation therapy for his prior diagnosis. Does anyone know if that in any way helps? Im not educated in this which is one of the reasons I posted. Im fully in the dark about the different types and what to possibly expect. Tomorrow, he will be calling the Hospital in Germany to see if we move there for treatment. I’m hoping that along this week we will have further details.

AussieNeil
AussieNeilAdministrator in reply to Bee4028

What's your boyfriend's prior diagnosis? Is it CLL and what has been his treatment history?

Please don't plan on travelling to Germany until you thoroughly investigate local treatment options. Even without the current COVID-19 travel challenges and quarantine related restrictions, the USA has much more experience in novel CLL treatments, including extension to Richter's Syndrome/Transformation (RT) than other countries and there are several centres doing good RT research. SofiaDeo has already recommended some close to you. If your boyfriend has a CLL diagnosis, he should be eligible for the truly excellent and free Expert Access programme for a second opinion: cllsociety.org/cll-society-... This gives him access to the top CLL specialists in the USA!

It's great news if your boyfriend is looking super healthy, more so if he is feeling good. With RT, without treatment, progression is fairly rapid and the involved node can be observed to grow fairly quickly. If he has had a recent blood biochemistry test, a warning sign is if his Lactate Dehydrogenase (LD or LDH) reading has jumped way above - like several times, an earlier baseline reading. This doesn't always happen with RT, mind.

Radiation therapy for localised CLL/SLL can actually cure the disease if done early enough, before it spreads more widely.

Take a few deep breaths; matters may not be as bad as they now appear.

Neil

Oh my goodness, how awful for you.....don't read Dr. Google, it's a lot of sensationalism & outdated information. Take a deep breath. Wait for test verification. There are new treatments & possibly clinical trials if further testing actually verifies Richter's.

Bee4028
Bee4028 in reply to SofiaDeo

Thank you for your kind words Sofia. I have been really going through it. This diagnosis has me down for the count. I PRAY he gets better. Its just been one negative diagnosis after the other. I feel so alone in all this. I act like I don’t have a care in the world in front of him but inside Im shattered. We seldomly speak about his conditions because I want him to be as happy as possible and not feel like a “cancer patient” all the time. Its so hard to believe because he doesn’t look like he has anything at all! Then reality just sets in....So grateful for you taking the time out to respond. Thank you.

And I say wait for verification...because as AussieNeil pointed out, there are some pseudo-RT syndromes. I just went through this myself last month! If you are physically in NJ, USA right now there are excellent centers in this country, some within driving distance. Getting on a plane to go international may not be a good idea right now unless it's absolutely necessary. Where in NJ are you? I saw Dr. Charles Farber at Morristown Medical Center a decade ago, they have an entire floor of the hospital just for clinical cancer studies. My first treatment there didn't work, but they introduced me to a treatment that put me in an almost 5 year remission. Dana Farber Institute is in Boston, Memorial Sloan Kettering and others in NYC. All are great treatment centers.

Bee4028
Bee4028 in reply to SofiaDeo

We are not far at all from Morristown. As a matter of fact, that is where he gets his current radiation treatments. Im not sure if they were the ones to refer him to other Doctors/hospital but someone did today. He was shaken up so he couldn’t provide much details. However, within the 3 hospitals they mentioned for treatment they did mention a Boston hospital. If you don’t mind me asking, have you had your diagnosis for a decade? I would love to know more. Any advise that you may have will be gratefully accepted.

Sushibruno
Sushibruno in reply to Bee4028

Hi bee, what other diagnosis does he have does he have cll (chronic lymphocytic leukemia?) How long has he been diagnosed?

Bee4028
Bee4028 in reply to Sushibruno

We just received his Richter Syndrome diagnosis but no specificities. Further testing have been made and we are awaiting the results. His prior diagnosis is of spinal cancer metastasizing to his prostate, stage 2. Its been about 2 years now. Good news is that he LOOKS to be in great health. You would never guess.

Hi Neil,

His first diagnosis was of spinal cancer. This later metastasized to his prostate. His first method of treatment was chemo which was not very effective. They then began radiation therapy; his current therapy. He has had his cancer diagnosis for 2 years and is stage 2. Thank you for the feedback on Germany. I will definitely speak to him about it. This is all so sudden and we know time is of the essence so we jump at the first gleam of hope (aka Germany). He does look great! He is young, just recently turned 40 last month. We noticed the node about 2-3 months ago and just now got the results. Once further testing is provided I will be sure to share. The link you sent is wonderful and so helpful! I would’ve had no idea to that resource. I appreciate you, Thank you.

I’m so sorry to read your post, indeed it’s a devastating diagnosis & one that my family & I experienced. Mine would appear to have been ‘pseudo RT’ because over the period of a month, biopsies ( and how I presented) confirmed RT but by the time I had a PET scan some 2 weeks later, I had transformed back. Like @AussieNeil said, it occurs sometimes when people’s treatment with ibrutinib is interrupted.

I completely agree with what others have said, don’t read dr Google. I didn’t, my family did and all it succeeded in doing was terrifying them unnecessarily. There are many on this site who have had successful treatment and others who have had this false experience too Priss69 admins a very helpful FB group too.

Bee4028
Bee4028 in reply to Sepsur

Thank you Sepsur. Priss69 was actually the reason I found this community and I have to say in such a matter of 24 hours everyone on this forum has been so loving and supportive. I am indeed terrified, extremely. I feel so hopeless in the situation...but you all have given me such hope. Thank you for sharing your experience.

Jm954
Jm954Administrator

Hi Bee, I'm sorry that your boyfriend finds himself in this situation. It's difficult to offer any advice other than general pointers at the moment because we just don't have the information.Having said that, several low grade lymphomas such as CLL and Follicular can undergo a Richter's transformation and it's important that there is a biopsy so that the right treatment can be given. Treatment is intense and there are some new treatments that are only available in clinical trials so that will be something to ask about. Here is a current list for USA

clinicaltrials.gov/ct2/resu...

The USA has some of the best experts and treatments in the world so you should definitely not travel elsewhere.

Let us know when you know more and we may be able to help further, even if it's only with questions to ask the doctors.

Best wishes to you both

Jackie

Bee4028
Bee4028 in reply to Jm954

Jackie, thank you for this list. Everyone has expressed that staying within the USA is the better alternative. Having this list as well as the other suggestions facilitates choosing the best Dr immensely. Your help is very appreciated.

I just wanted to add that he is so lucky to have a supportive partner, but it is also very hard to be the strong one. Sending you plenty of virtual support from all of us on this site.Cx

Bee4028
Bee4028 in reply to Psmithuk

Psmithuk, thank you so much. Your message truly brought tears to my eyes. It is incredibly difficult to be strong in moments like this. Oddly enough, I am never ever this vulnerable and this community has made it so I feel so comfortable to finally release my pain and worry and Im so eternally grateful for it. Its been years putting on a smile and pushing forward for my love. He has never seen a tear or worry from me. My goal is for him to always have hope and feel safe. Thanks to all of you, I now I have a place where I too can feel safe and I thank you all from the bottom of my heart.

Psmithuk
Psmithuk in reply to Bee4028

That is such a nice post, Bee. This is a lovely, helpful, supportive community. Don't be afraid to share your worries, as someone will always have been there before.love Chrisx

Bee4028
Bee4028 in reply to Psmithuk

Im ever so thankful.

Ghounds
Ghounds in reply to Bee4028

Dear Bee4028, your partner is so very lucky to have you by his side supporting him. It is very hard to watch someone you love go through something like this. We are all here for you whenever you need us.

Bee4028
Bee4028 in reply to Ghounds

Ghounds, thank you for your kind words and support.

lankisterguy
lankisterguyVolunteer

Hi Bee4028, -

I live in Westfield NJ and know of a CLL expert doctor at Weill Cornell NY Presbyterian that specializes in Richter's treatment. Dr. John Allan MD

weillcornell.org/jnallan

doctors.nyp.org/john-n-alla...

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I also co-facilitate the CLL Society support group that met at the same location.

-

cllsociety.org/event/new-yo...

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and we have numerous members that see Dr. Allan for CLL, he is very thorough, knowledgable and popular.

-

Len

Bee4028
Bee4028 in reply to lankisterguy

Hi Len, Im very familiar with Westfield. I have yet to speak with my partner about the situation today as he is not in the right head space. But you can be sure I will reach out to you soon. Truly appreciate you.

Hi Bee, hope you are feeling a little better. To answer your earlier question, I was diagnosed a decade ago at age 52 with CLL, and the markers showed I was in the "high risk of mortality" group. This was just before some of the " new"targeted treatments & monoclonal antibodies were approved. Before these, standard chemotherapy was about the only option. The local docs were pushing for a Bone Marrow Transplant & saying things like "50% mortality in 3 years". I didn't "look sick" then & still generally don't. I decided to do a Clinical Trial in NJ, a specialist I spoke with at Fred Hutchinson on the West Coast wanted me to try & fail FCR before trying other treatment. So the first NJ trial didn't work, but those research specialists told me about another protocol I took back to the Rocky Mountains where I live. It put me in a decent almost 5 year remission. Since then, I've tried 3 other things that didn't work, and am starting (today!) a fourth. And if the locals are trying to verify or rule out RT, if it were me I would look at lankisterguy' recommendation of a CLL specialist further specializing in Richter's at Weill Cornell Pres. Since Richter's isn't very common, a specialist in That would be optimal IMO. That specialist would also have a great insight as to which Clinical Trial might be optimal if that's your interest. Please keep us posted!

Bee4028
Bee4028 in reply to SofiaDeo

Hi Sofia, thank you for sharing your experience. You have a wonderful energy that I very much need at this moment. I truly hope that today all goes well with your new trial. From the little I know, Richter is in-fact uncommon and any little bit of info helps. Lankisterguy has been so extremely helpful and everything said is being strongly considered. I shall continue to keep you all posted and I wish you do the same as Im wishing you all good health and positive vibrations.

cllady01
cllady01Volunteer in reply to Bee4028

Bee, you have been given very good information and I understand you are not able to communicate with your boyfriend at this point? At least that is my take on your statements about "he is not is the right space".

If you are able to talk with his Drs. and get the specifics, that would be excellent--if his parents or relatives have the specifics, maybe you can talk with them? Just a thought and not a directive of what you need to do. Not having the inside information makes it difficult to know what you and he needs at this point. However, as others have given you a wealth of info, I wanted to just say thank you for your post and please keep us posted as his treatment or tests get revealed. If he can, when he can ask for copies of all tests you can begin to get a picture of what is going on--if the tests need some interpretation, please ask us for help in interpreting them and someone will step up if it is possible (we do focus on B-cell cancers and CLL and he may be one of us.

Thinking of you as you so kindly try to help him--your support can make a difference for him.

Bee4028
Bee4028 in reply to cllady01

Thank you cllady for this wonderful message. I appreciate you all very much. I was indeed able to speak to my boyfriend. He has his moments. I shall write a new post requesting advise on how to better support him as this is so delicate. Thank you again and I hope to read more of you soon!

Several of the posts above speak of the mistake of looking up CLL/RT on Google. It can be a disaster. My daughter was going through the process of adoption and her social worker looked up CLL and decided that I was being measured up for my wooden suit imminently and that my daughter was therefore in denial about my impending demise and could not cope with my death because she was not accepting it so was not mentally stable enough to adopt. Stupid bloody social worker; her erroneous report screwed up my daughter and son-in-law's application to the Adoption Panel. All through relying on Google. I am in treatment and looking forward to at least 15 years' more healthy life!

Bee4028
Bee4028 in reply to SERVrider

Hi SERVrider, thank you so much for sharing your story. Post after post it is stated that Google is NOT a good resource. I too spiraled due to this error. I absolutely understand your daughter. Finding this community has truly been a blessing for me and maybe it may be a blessing for her. Im sending you much light and energy during your treatment. May you be healthy and soon enjoy alongside your newly adopted grand-child. Blessings.

Peace of mind first. I handed you the private Facebook group where all the Ricthers are. There are new treatments for Ricther and the Car-T's are working very well. Get in touch with the group and you will see that there are currently people in treatment who have entered remission.

Bee4028
Bee4028 in reply to Priss69

THANK YOU.

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