Hi everyone. Back with an update. New diagnosis: Follicular B, Stage IV, Grade 2. (was Grade 1) Previous treatment was Rituxan and Bendamustine, remission, shingles and it's baaaaack. Has anyone had O-CHOP? Obinutuzunab, Cyclophosphamide, Doxorubicin, Vincristine. Am scheduled for infusion 1\29,30,31. Doctor said that this cocktail has 30 years success rate leading up to stem cell transplant.
Wondering if anyone has had this and how it went. I know I will lose my hair and it will grow back. I'm ok with that. What concerns me is that I had to have a baseline heart echogram because of possible side effects to my heart and I keep remembering what my first Rituxan infusion was like--not pleasant.
Then I have my husband gathering horror stories from his FB "friends". How I am going to wind up with chemo brain and I will need someone to change my diapers, etc., death with dignity, yada yada yada. I told him that they are NOT me and I am trying to stay positive and if I get to that point, I pray that I have the grace that my Mom had and say I've had enough.
Anyway, I would like to know if anyone out there has had experience with this particular program and if it was successful. Thanks friends!
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kstan8
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My wife (FL Stage IV Grade 2) had 6 cycles of R-CHOP. Lost her hair and progressed after 4 months. Some chemo brain but it might be attributed to aging - she is 71. She also progressed after 6 cycles of BR. She received a CAR-T infusion at NIH in March 2016 and has been in CR ever since. More on CAR-T for FL patients who are considering or have had CAR-T at fnhlben.wordpress.com/
I don't have experience with it but applaud your desire to stay positive. An attitude of gratitude goes a long way. When I felt like I needed a good cry I did it and felt better. I'm blessed to have had a great reaction to Rituxan. It seems to have set me on a good path. Prayers for your healing!
Hi, I am FL B Stage IV Grade 3. Had R Chop and maintenance for 2 yrs (one more to go). So far so good... I still have an itchy spot on my back which bothers me as mine is in my thoracic spine/bone marrow ++ and the spot that itches is exactly where I had a large tumour. Anybody else have that? I am in remission and I worry that it is coming back.
My husband has NHL ALCL Alk+, had CHOEP, and after 5 rounds had recurrence in the Menages. Multiple rounds of additional chemo as well as intrathecal chemo. Cancer relapsed again and since chemo options were exhausted doctors suggested Opdivo
Three doses every other week and scans returned NED! After radiation therapy and additional chemo for transplant prep, He’s currently in process of stem cell transplant. Day 9 post transplant!
There are occasional challenges of chemo brain but I would encourage you to read, work puzzles, things that are problem solving. Multitasking may frustrate but continue to try doing it.
Oh, and stop listening to negativity- vocalize and repeat I AM NOT A STATISTIC!
Thank you for the information and support. Had initial reaction to first OCHOP but have had two more without problem and another scheduled for tomorrow. Have had fatigue and minor nausea but other than that, I'm feeling pretty good. How is your husband doing with the stem cell transplant? I'm kind of nervous about that, knowing the doctor said it would require two weeks in the hospital and I'm worried about cost as well. Have also begun seeing a counselor to relieve some home stress--feels good to unload. Am also researching Rick Simpson Oil and the no carbohydrate diet they have.
Hope all is well with your husband and you as well.
kstan8, I’m sorry the initial reaction didn’t go well, so glad subsequent treatments have gone well. Stem cell transplant, today is day 72 post transplant and thankfully doing well except with the fatigue part. Thanks for asking and best wishes
I had r-chop in 2013. I did have chemo brain but I didn't have anyone changing my diapers. Haven't heard of that. "Everyone is different" is what every medical person I talked to. I talked to a medicine man and he told me exactly where the cancer was, about treatment, about being in the hospital, and how I would be okay. All of that happened.
I had a mail lady that had the same diagnosis a couple of years before and she would help me... she told me that I would lose my hair after the first treatment and that happened to me. She then told me she had 10 wigs from when she lost her hair. That gave me permission to buy 3 wigs. I really didn't need 10. It grew back pretty quickly after and I liked the short, coarse curls I had briefly when I grew back as I normally have straight, thin, flat hair. I'm not sure about Obinutuzunab, as I never heard of it when getting treatment in 2013. I saw a lymphoma specialist at the University of Minnesota. His name is Dr. Peterson, and he is retiring this year. I'm not sure when, but I saw him for the last time, last month and I'm not scheduled to go back for another 5 months.
Thank you. I'm so happy for you that you are doing well. I guess I've been reading too much about the stem cell transplant. It has me concerned--physically and financially--especially since we live about 3 hours from the only hospital in our area that does the transplant. Plus I always get anxious the day before chemo treatment. It's good to be able to talk to people in similar situations that understand what you're feeling and going through.
I had a stem cell transplant in 2016. I will be honest, it was no picnic, but I would do it all again if needed. I was treated for Diffuse Large B cell lymphoma. The transplant knocked out that lymphoma, but I relapsed with Marginal zone lymphoma in October of 2018. So far I am doing fine. I had 12 radiation treatments that put me back in remission.
Thank you for responding. I spoke to my doctor yesterday and asked what would happen if I don't do the stem cell and he said we would continue the OCHOP and there is another option of car T cell. He still wants me to meet with the transplant doctor though. So now I want to read up on car T cell. This is all so overwhelming and kind of scary. I'm glad you are doing well.
My transplant doctor was wonderful. I was in the hospital for an entire month. Every day she came in to see how I was doing. I would tell her "not so good" She would tell me it would get better and she was so proud of me. It was a long road, but I did get better
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