I met with the local oncologist today to do treatment plan for confirmed Richters.
I will be admitted on Monday to start 5 days of DA EPOCH - R with Venetoclax for 10 days per cycle. The doctor said it will be a challenge but they will see how I tolerate it and adjust appropriately if I have any major problems. The goal is to get me ready for CAR-T.
I will update next week as am able. I just want to thank everyone who has responded and provided great information that helped me make the decision to treat, by whom and where. Ironically it will not be at UPenn but locally by hematologist/Onc in NJ and at a RWJBH Medical center 20 minutes from my home. Logistically this will be much easier for me, my disabled spouse and small support unit.
Thank you to all who are praying for me. Means so much to know that people care enough to do that for someone you’ve never met. Much appreciated!
God is good!
ReneeSusan
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ReneeSusan
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That's wonderful that you can have the treatment, so close to home 🙌 Praying you will tolerate it well and it will be a success. Yes indeed, God is good and He will see you through. You will be in my prayers, Renee Susan 🙏🙏🙏 Thank you for sharing your journey. All the best, Susan
So happy to hear you have found local hem-oncs, willing to do a newer protocol! It takes away so much stress, to be this close to home, not having to travel. Now you can focus on healing without worrying about your spouse so much, and having your support right there as usual. What a blessing.
Yes, so true and how ironic you shared with me about venetoclax. I read your post this morning before going to the doctor, so I was excited he had that planned.
Thank you for sharing your miraculous news. You've worked through some extremely challenging circumstances - facing down what many of us fear. To find such a very promising treatment so close to home must be an incredible relief. You have an understanding doctor who has honestly shared with you that treatment "will be a challenge" , but very importantly, is prepared to make adjustments as needed for you. Richter's is curable and very long remissions are possible with CAR-T.
You've plenty of community support here. Reach out as you are able and know we are here for you.
Yes, it truly is an answer to prayer! I am so grateful for this wonderful forum and the generous hearted and extremely knowledgeable folks here. I mean that from the bottom of my heart. I always share with others about the great support to be had here and how you all have helped me to he a better educated patient advocate for myself.
All the very best ReneeSusan. It's great you have this much sorted, and a bonus that you've been able to organise your treatment so close to home. Wishing you every success.
Sounds reasonable. As I told you yesterday, I also got a diagnose after DLBCL for RT, as 76-80 % will result in it. Therefore Prof Hallek from Uniklinik Cologne, my treatment Doc, recommended CART immediately. After testing the blood samples from before and after DLBCL treatment, Labor explained, no connections between CLL and DLBCL, therefore no CART and my CLL went back to MRD 0,5 since 16 months.
Only problem that occurred was Pure red cell aplasie suddenly. But that could be treated easily with Cortison and IgG IV (Octagam).
I was told that CART has got a great chance (80%) to eradicate the RT!
So it turns out you might have the option of glofitamab AFTER CAR-T at Penn. I am not sure if they mentioned it to you since it isn’t relevant until after CAR-T.
It would be lovely if CAR-T took care of the job but just in case it is fantastic to know glofitamab is available in your backyard. When I do clinical trial search for Richter’s it didn’t come up. So this should be a lesson for us all that we should search for DLBCL trials that might include Richter’s but do not say so in their listing. We just need to ask! Obviously, not all apply to us.
Thank you! Yes He has been with me during this 16 year journey and now that we are at the juncture I will need him even more. I know He is faithful and will walk with me the rest of the way.
Praying for a successful treatment for you, very best wishes. It's great that you won't have to travel far. I hope you tolerate it well and there are no complications.
I worked at RWJUH as an ICU nurse. I always felt it was a first class hospital with excellent staff. You'll be in good hands, i am sure. I hope your treatment goes well with a positive outcome. 😊
My prayers to you on this phase of the journey, ReneeSusan. Excellent Heme/Onc group at RWJUH. It was the first stop after my stage IV CLL diagnosis over 16 yrs ago. If they don't have a trial open, they refer to others centers of excellence for CLL. They were early CAR-Ters with strong interest in this modality. So glad you have a good plan and that treatment is close to home.
You know I understand your plight and concerns. I’m sending hopeful positive thoughts your way. Our battles highlight with even a diagnosis of Richters the differences in mutations may dictate a different approach to treatment. May your treatment bring you great results and many blessings.
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