Follicular Lymphoma

[CraigWilson]

Hello, I was diagnosed with Follicular Lymphoma in February. I’ve already had 4 sessions of RITUXAMAB. The doctors are happy that most cancer cells are gone but it’s incurable as there are dormant cells still in me.

I’m interested to hear about other people’s stories, your diet, lifestyle changes etc.

Thanks, Craig Wilson.

[wmay13241]

In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of December 24, 2018, she has been in complete remission for 33.5 months. Clinical trial studies show that CAR-T cells may result in long-lasting remissions for some people who have follicular lymphoma. There is more information on CAR-T for fNHL patients and people considering CAR-T at fnhlben.wordpress.com/

Other non-Hodgkin lymphoma sites I visit often are:

lymphobob.blogspot.com/

lymphomation.org/#what-is-new

lymphoma.org/ (look for free "Ask the Doctor" meetings near where you live)

lls.org/

[Bnud]

Hi, Craig. Sorry to hear you have cancer. I'm so happy to hear that the Rituximab is keeping your cancer in check. That is great.

I was diagnosed with Stage 3/4 Follicular lymphoma last spring on the week of my 52nd birthday. At that time, I had cancerous lymph nodes all through my body (base of skull, under jaw and chin, sides of neck, armpits, chest, abdomen, groin, breasts), with the biggest being 8 X 10 cm (may have been 2 lymph nodes matted together). I didn't have a bone marrow biopsy, so I don't know if it was/is in my bone marrow. I started Bendamustine and Rituximab right away. I'm through that part and the plan is to start on Rituximab maintenance in February. My doctor was really excited by my mid-chemo scan, which is usually a really good sign. He said he thought I would have a complete response. My post-chemo scan showed only a partial response, the same or worse than my mid-chemo scan. That is very unusual. I was hoping for better...but it is what it is. I just found out the results today. It will take a little while to absorb and accept that information, but then I will carry on. Though I'm new to this, I find that is how it goes. I hear bad news which takes my breath away for a few days, and then I move on, thanks to God.

Right up until I was told I had incurable cancer, I had excellent healthy (so I thought). Funny, I took pride in my health, as if I controlled it. Anyway, I am very health conscious and I have always lived an extremely healthy lifestyle. Since my diagnosis, I have stopped eating all processed sugars and have started to eat organic. My doctor said my diet won't matter to the cancer, but will help with my general health. My healthy lifestyle didn't prevent me from getting cancer, and I doubt it will change my prognosis now. I guess I do it out of habit and the idea that I want to be in the best shape I can be in for future treatments. I'm not sure how I will feel about this as things progress. I might just eat everything and enjoy the food. I'll see.

So many things have changed for me. I know people say how cancer has made them a better person and they appreciate life more. For me, I miss my old life. I have always loved life. I was a social, active person. I was busy at work making a difference in people's lives. Now I'm very tired and sleep a lot. My immunity is low so my doctor has said that I can't go out in public. My tumours hurt (I think this is very unusual) and my veins hurt from the Bendamustine (also unusual). So far, I can't see how cancer has made me a better person in any way. I hate it. One of the worst things has been how people have abandoned me. The very best thing is that God has not. He is my rock, as always, and has been with me every day. I love Him. He is faithful.

Thanks for reaching out to the community. It is wonderful to have support and to chat with people who understand.