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DLBCL

Hi, I'm Babs

Hi, I’m Babs, am I’m looking for current input on NH DLBCL. I am in between RCHOP infusions 5 and 6. 6 being my last occurring next month. Does someone have the same DX as I? Would you be willing to discuss your experiences? The postings that I have found are from years ago. Hello- is anyone out there?

  • Post #1
  • Mon Jan 27, 2020
Hi, I'm JOAN M T.

Hi Babs, I’m not sure if I had the same diagnosis. The abbreviation of NH DLBCL I am interpreting as Non-Hodgkin Diffuse Large B-Cell Lymphoma. If that is the case, then yes, I had the same diagnosis. I had 6 infusions of R-CHOP followed by 12 days of radiation. I was diagnosed in February of 2015, so it has been 5 years. I would be willing to discuss, but if you are looking for experience within the last year or so, I understand. BTW, my name is Joan

  • Post #2
  • Sun Feb 2, 2020
Hi, I'm Bill_C

Babs, I’m curious as to why you think that older posts in regard to RCHOP would be any different than more recent discussions. RCHOP is a set of five drugs that have not changed for years to my knowledge, except that Rituxin (the R drug) was added in the last 12-15 years.. I was administered 6 sessions of RCHOP during winter 2010 – 2011. It killed my cancer, but two months afterward it came back. Other people get longer remissions but there’s just no guarantee with anything. To make a long story short, a year after RCHOP I had a study drug that was not approved by the FDA and got a 7 year remission. That drug is no longer available. Figure that one out, but during and afterward I was also on an anti cancer diet, so that’s another variable.

My original diagnosis was NH DLBCL Stage III. I wish you well.

  • Post #3
  • Sun Feb 2, 2020
Hi, I'm Babs

Thanks for your feedback. I have NHDLBCL, like Joan in the previous post. I’m asking for input from both current RCHOP patients and those in remission. I am interested in your journey, and I know that everyone has their own path to walk. As you wisely pointed out, some cancer drugs are now not available. I have my final RCHOP this week. My DR. did not indicate any radiation therapy. I hope that is true! My recent PET scan showed significant improvement from my first one in Oct.
I was DX in Oct. 2019, at Stage 4, so this felt like a ride with a NASCAR driver. Information overload but I read everything that I was given, and many of the resources from the Center.
I wish everyone well and appreciate your contribution.
Beat this Cruel disease!!
Babs

  • Post #4
  • Tue Feb 4, 2020
Hi, I'm JOAN M T.

Babs, this is Joan again. I, too, was diagnosed with stage 4. I started treatment in February 2015 and finished chemo in June 2015. I had radiation shortly after that. I had 2 clear scans that year; one in October and one in December. A scan in June of 2016 showed that the cancer had returned. My doctor’s plan of attack was a stem cell transplant using my own stem cells. Before this could happen, my cancer had to respond to a different chemo regimen. It was an in-patient infusion so I had a 4 day hospital stay each time. After 2 rounds I had a scan that showed no response. My doctor tried another different chemo regimen that was out-patient. After 2 rounds, again, no response. My only option, at this point, was to try a clinical trial. Late fall of 2016 I was placed in a Phase 1 trial. By the grace of God, my cancer responded by starting to shrink! My clinical trial oncologist went before tumor board for input about having the transplant. They wanted to see a bigger response. I continued in clinical trial and after a number of weeks, another scan showed that the cancer was still shrinking (slowly). Back to the tumor board and they thought this would be my window of opportunity to have the stem cell transplant. Now, though, I would need a stem cell donor. I had a stem cell transplant in August of 2017. I have been cancer free since my transplant. I have talked to so many patients along the way; most with a different diagnosis than mine, but everyone’s story has a common thread running through it; however, part of everyone’s experience is unique to them. I wish the best for you!!!

  • Post #5
  • Sat Feb 8, 2020
Hi, I'm Babs

Hi Joan, I am so happy for your remission and the stem cell success. I find this info so helpful and encouraging. I’ll check in again soon, I’ve had a few bad days, but it will be okay. Wishing you the best. Babs

  • Post #6
  • Tue Feb 18, 2020

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