Transformation Confirmed - Likely Richter’s - CLL Support

CLL Support
14,203 members22,428 posts

Transformation Confirmed - Likely Richter’s

SarasotaPaul
SarasotaPaul
49 Replies

My doctor called yesterday and confirmed my PET from last week shows definite transformation and the PA called today to say it’s likely Richter’s (forgot to ask if confirmed by the biopsy - still shock) and they want to start treatment this week. I’m headed back to Houston for consult and planning. Meeting with the transplant team, too.

Options so far appear to be RChop or some version, or Nivolumab with Ibrutinib to prep for an allogenic transplant, or possibly a Cart T transplant (still in trails) at MDA.

Are there other options to consider?

Can’t deny I’m worried about: prognosis, missing work, taking care of my elderly mom, holidays with my family and how do I explain this all to family, clients, people at work and friends. Most have no idea I’ve had CLL for 18 years. My best guess is to just jump in and deal with it. Advice appreciated.

Thanks!

49 Replies
oldestnewest
81ue

I'm sorry about your news. The only thing I can say is "likely Richter's" doesn't seem very certain. Something transformed but into what? That will tell your possible further treatment options than the ones you already are considering (for Richter's).

edit : I saw your previous post that you possibly could have transformed to prolymphocytic leukemia - PLL - (if it's not Richter's) in which case you might try venetoclax plus ( rituximab or obinutuzumab)

6 likes
Reply
Mystic75

Hi Paul,

I'm so sorry you are having to deal with this. Although I don't have any suggestions for other options for you (certainly doesn't mean there aren't any - I just don't know of any), often the other stuff has a way of working out.

I don't know your circumstances, but I can tell you that often reaching out to others for support can be greatly beneficial. It always helps to have someone to talk things over with because to handle everything on your own can be overwhelming.

And of course, we are here for you as well. Hope you are able to get the answers you need and all the best in Houston.

Big hug,

D.

9 likes
Reply
PlanetaryKim

So sorry to hear the news Paul. I don't have any treatment advice, but at least you are in good hands with MDA. Sharing the news with others is always difficult. Maybe will be easier after you have a bit more information - complete confirmation of Richter's and the treatment recommendation from MDA. Wishing you good luck!

kim

10 likes
Reply
Jm954
Jm954Administrator

I'm sorry to hear that our worries about Richter's have been confirmed by PET.

You now need to have a proper exision biopsy of one of your enlarged nodes so that the exact type of lymphoma can be determined, a FNA will not do the job quite as well. It may be either a Hodgkin's or non Hodgkin's type of lymphoma and the treatment depends on what type it is.

If your Dr is talking about RCHOP then he thinks that it's a Diffuse Large B Cell Non Hodgkin's Lymphoma but I would want to know if that is definite from the FNA biopsy.

Richter's is treatable and can be cured so hopefully, you'll be back to your normal life at the end of the chemotherapy. RCHOP is quite tough but almost everyone comes through it really well and you are at a great hospital.

If you don't want to, then you don't need to tell anyone about your previous 18 years of CLL, just let them know about this new lymphoma and your treatment. I'm sure your lovely friends will be with you and supportive all the way.

Here's a Richter's info booklet which has been recently updated in case you need it: media.leukaemiacare.org.uk/...

All the best with this, please let us know how you are

Jackie

22 likes
Reply
SethB34
SethB34
in reply to Jm954

Informative.

2 likes
Reply
HailMary-USA

Paul, I am just sending you best wishes for strength, support, and an easy time with the treatments.

Mary

3 likes
Reply
SarasotaPaul

Has anyone on team CLL here had a Car T transplant?

Reply
HailMary-USA

Paul, here is a link to CLLSociety.org, where you will find extensive resources about all things CLL. On this front page, see the tab for Dr. Brian Koffman's blog. He is a member of this forum and founder of CLL Society. He's also been through the CAR-T process and has a separate blog section dedicated to that info.

cllsociety.org/dr-brian-kof...

Best of luck to you,

Mary

3 likes
Reply
AussieNeil
AussieNeilAdministrator
in reply to SarasotaPaul

Dr Brian Koffman successfully had one in April 2018 and is not the only member to do so. See his posts for more information healthunlocked.com/user/bko...

6 likes
Reply
SarasotaPaul

My doctor today confirmed Richter’s. Friday I meet with the transplant team. Interesting recommendation for conditioning pre transplant is the CAR NK. I’m leaning towards the Nivolumab/Imbrutnib for conditioning. Lots to digest.

1 like
Reply
Justasheet1

Dr. Koffman also had a transplant years ago as well as Car-t more recently.

3 likes
Reply
MsLockYourPosts
MsLockYourPostsVolunteer
in reply to Justasheet1

Brian’s transplant wasn’t successful. I first met him at his 100th day party after it, which was before he knew that it didn’t work. Perhaps the conditioning bought him the time needed to get into the Ibrutinib trial. And that put his CLL on hold for several years before he decided on CAR T. He’s still here and has more energy than I had in my 20’s. I know that he will be able to give you some help getting up to speed quickly. bkoffman

I also have friends who have either done RCHOP or a transplant successfully when they transformed and are doing extremely well. There are lots of us here who are sending all kinds of positive thoughts!

6 likes
Reply
HopeME
HopeME
in reply to SarasotaPaul

Hello Paul: There is lots of information on the web about CAR NK and most of this research is happening at MD Anderson. The more I read about MD Anderson the more I am convinced that this institution is the best in the world for treating blood cancers such as CLL. I know you are down and concerned but have confidence in your MD Anderson professionals, you are incredibly fortunate to receive your care there. There are many of us pulling for you. I wish I could do more than offer words of encouragement. Good luck at your appointment on Friday.

Best,

Mark

5 likes
Reply
HailMary-USA

Paul, I'm sorry for this distressing news.

Here is interview of Dr. Brian Koffman about his CAR-T experience:

healthunlocked.com/cllsuppo...

You can find more of his posts here by searching Members for BKoffman.

Mary

3 likes
Reply
doggers805

I am very sorry to hear of your news. Wishing you the best to over come this.

2 likes
Reply
pkpayne

I just hate to hear your news Paul. But I agree that MDA is the best in the world when it comes to blood cancers (as well as many others). Definitely go there and let them guide you. The forum here will be rooting for you so keep us updated. Best wishes for you to beat this. Paula

2 likes
Reply
JR1964

Paul, I just wanted to say that I hate hearing that you are having to deal with this but do know you are in one of the best places possible for treatment. I myself go to MDA has well as family and friends. Top Notch. Please keep us informed of your progress. STAY STRONG JR.

2 likes
Reply
Wendy328

I have no answers but I can offer a ((Hug)) and prayers.

3 likes
Reply
Kokobean

Sending you prayers for treatment options and good results. 🙏🙏

2 likes
Reply
Brassy

Paul, So Sorry you are having to go through this. You will get amazing support from your friends and family when the time comes to share the news. It’s wonderful that you are a patient at M. D. Anderson, no place better. Prayers for you to prevail against Richters as you have for the last 18 years against CLL. Brassy

2 likes
Reply
ragged

Paul,

I saw saw Dr. Koffman’s recent interview of Matthew David’s, MD of Dana Farber in Boston regarding new approaches to treating Richter’s that is showing promise at their institution. See the link below. It may be something to discuss with your providers as you learn about your treatment options.

cllsociety.org/2019/11/eha-...

2 likes
Reply
SarasotaPaul
SarasotaPaul
in reply to ragged

Wow, thanks for sharing. Just forwarded the link to my Dr asking what to expect to get into remission. It’s becoming obvious the conditioning phase could be the most important decision here.

3 likes
Reply
Hoffy
Hoffy
in reply to SarasotaPaul

Nitin Jain at MDA does a fair amount of work on RT. This Dana Farber sounds very interesting.

City of Hope has some CAR-T trials as well.

Be well,

Hoffy

2 likes
Reply
Ohannie236

Paul, so sorry you are having to deal with this and all the other disruptions to normal life that come from it.

Nothing we would ever have chosen, and yet there will be deep and everlasting gifts inside it nevertheless. Life and those we love revealed in all their irreplaceable preciousness, though we might have chosen to see by a less complicated sort of light....

Just wanted to wish you all the best as you determine your path. You are in the very best hands at MDA. And you are so much stronger than you even yet know.

You can do this, and we're all right beside you, sending so much love and hope!

Sincerest prayers for you and your own ones as you go forward,

Annie in Ohio

1 like
Reply
Pippasue

Praying for you in Colorado, Paul! As everyone has said, MDA seems to be the best possible place you can be.

God bless you.

2 likes
Reply
bayside64

Wishing you all the best for a smooth road ahead.

1 like
Reply
SarasotaPaul

My wife and I meet with Dr Sphall in the transplant department at MDA today and left feeling her and Dr Wierda can conquer my Richter’s. Sort of a “shock and awe” approach with a combo Vivolumab/Ibrutinib, CAR NK, and stem cell transplant - a 1,2,3 slug fest. The fun starts tomorrow with my first treatment. Things are progressing quickly so looking forward to getting this started.

I still feel great, so surreal to know Richter’s has “significantly” invaded my body - my PET scan looks like a Christmas tree.

I’m very thankful to have good insurance and to have the resources to be here at MDA with their expertise and cancer killing tools and options.

Wish me luck!

7 likes
Reply
Justasheet1

Paul,

Dr. Wierda’s my doc too, as you know. If anyone can get you healthy it’s him. Prayers for you and your family.

Jeff

1 like
Reply
Priss69

When are you going to start your treatment? I finished being treated by Ricther three months ago.

1 like
Reply
SarasotaPaul

I start my first treatment this Friday. I’m starting with Opdivo (Nivolumab) and Ibrutinib. 1 round every 2 weeks over 8 weeks.

How are things going for you?

Reply
Priss69

Are you going to be treated for the Ricther with Ibrutinib?

Reply
DriedSeaweed

Looks like she mentioned a combo:

Vivolumab/Ibrutinib, CAR NK, and stem cell transplant - a 1,2,3 slug fest

1 like
Reply
Priss69

I was given only the R-CHOP

1 like
Reply
DriedSeaweed

Which is classic and works! I suppose they are experimenting with other angles of approach.

1 like
Reply
Priss69

before taking the R-CHOP I took ibrutinib for the LLC. It is not the first time I hear that Ibrutinib is given for the Ricther.

1 like
Reply
SarasotaPaul

Yes, in combo with the Opdivo infusions. CAR-NK would be next if not in remission, then a Allogenic Stem Cell Transplant.

The reality of all of this is just starting to hit me. Still trying to figure out how to deal with work and finances.

Reply
Priss69

Why haven't you been given the R-CHOP?

1 like
Reply
SarasotaPaul

I’m doing the Opdivo with Ibrutinib instead of R-Chop. It’s been a clinical trail at MDA, but think it’s open now. R-Chop is the backup plan if this doesn’t work, but what I’m doing has less side effects so I can continue working for now. Results have shown to be about the same.

Reply
Priss69

Have you been told if this treatment can cure you?

1 like
Reply
SarasotaPaul

That’s the plan. Seems like a successful SCT is key.

Reply
Priss69

Don't you get paid for this sick? In Europe if you are working and sick you get paid.

1 like
Reply
SarasotaPaul

I do have disability insurance, but it only covers 33% of my income. I’m the primary earner in the family with kids in college and sadly with too many expenses. Plus, I love, love what I do for work, so the thought of taking time off has been difficult to comprehend.

1 like
Reply
Priss69

Uffff that was difficult. I guess you have to be physically exhausted. I do not work and could not work as much as I wanted. Finish exhausted after so many treatments.

How long do you have to be with treatment?

1 like
Reply
SarasotaPaul

I have 4 treatments over 8 weeks and then comes the CAR NK, or if I’m in remission, I’ll go straight into the Stem cell transplant. I’ll need to take off 30 days for the CAR NK and 100 days minimum for the SCT. I’m not looking forward to it, but know this is my best chance to beat this monster. Happy to hear you’re in remission. I need some good news.

Reply
Priss69

They don't know if I'm going back. You have to live many years like me. I have a young son and I have a panic to return to me.

I pass you my Facebook to be in touch. On my facebook there are several Ricther and we all talk in private. I never publicly said what I had.

I also give you my email.

Private contact details edited out by Admin for safety reasons.

1 like
Reply
Newdawn
NewdawnAdministrator
in reply to Priss69

Prissa, I’ve had to edit out your private contact details above as it’s not safe to make them known publicly especially on an unlocked post (meaning it can be found by google).

Please send SarasotaPaul a pm with those details and this will be private between you.

Regards,

Newdawn

1 like
Reply
Priss69
Priss69
in reply to Newdawn

Sorry, I didn't know it was public. I thought I was sending a private message. I don't understand how this page works yet. Thank you

1 like
Reply
Newdawn
NewdawnAdministrator
in reply to Priss69

No worries at all Prissy... this explains how to send a pm (private message) that doesn’t appear on these pages;

support.healthunlocked.com/...

Newdawn

Reply
Priss69
Priss69
in reply to Newdawn

Thank you very much. Finding many Ricther together is not very common. We have to help each other.

1 like
Reply

You may also like...