Follicular Lymphoma: looking to connect with others

I discovered a pea sized lump under my left ear while I was shaving one morning about 4 months ago. I didn't think much of it, until I realize that it had grown after a couple of weeks. I went to seem my general practitioner, whose facial expression, and mannerism, suggested alarm. He put me on antibiotics for ten days, then referred me to a "head and neck" doctor. He made a preliminary diagnosis of carotid artery body, and sent me on to an oncologist. A biopsy nailed it down as B cell follicular lymphoma. He sent me on for treatment at the Southern Cancer Center in Mobile, Alabama. I went to so several different floors of several different buildings, getting tests that never seemed to end. A PET scan showed 3 tumors in my neck, two in my chest, several in my abdomen, and several in the pelvic area. The oncologist assured me that he could "fix" it without surgery, without radiation, with chemo treatments. I had a permanent IV portal installed under my left collar bone two days ago, received my first treatment yesterday ( R-CHOP) followed today with a shot to stimulate the bone marrow to produce more leucocytes. So far, the only side effect I have experienced has been irritation of my throat due to the breathing tube that was used to monitor and regulate the anesthesia, and to keep me from swallowing my tongue. I understand that any side effects will probably peak in about a week, so I will soon know more. The waiting and uncertainty can be unnerving, but all of the doctors I have consistently said that this is a slow growing illness, and have been very positive about getting it into remission. We often talk about negative side effects, but I have also experienced some positive ones: Thanks to the Prednisone, the arthritis pain in my hands and shoulders has gone away, even if only temporarily; I have had trouble with hearing in my right ear, possibly due to pressure on a nerve. That is much improved; I have had incontinence problems due to an enlarged prostate. That has improved dramatically. All of that one day after my first treatment. I wonder what the next few months will bring. I will be getting a total of 6 treatments, spaced 3 weeks apart.

Hello @caracello22,
Colleen linked me to this conversation as I also have Follicular Lymphoma (low-grade) diagnosed from one neck lymph node excision. My incredible oncology team at UCSD has been "actively surveilling" me since my diagnosis 3 months ago. I am asymptomatic BUT I have lesions in many bones (neck/spine/both hips and pelvis), which they first thought was part of FL once they ruled out Multiple Myeloma. Three bone biopsies and bone marrow biopsy all came back showing no lymphoma or metastatic disease. Chemo for 6 months was recommended before these last results came in so now we tabled chemo until my next PET scan in a few weeks. It's been a day-by-day/week-by-week roller-coaster ride. My oncologist said chemo would have zero impact on benign lesions so we will compare my first scan to the next one to look for any other changes.

From what I have been told and researched on my own, Follicular Lymphoma is a chronic disease, not a terminal one. It seems our bodies respond to it differently as evidenced by the forum here. I hope your team can give you more assurance about treatment vs. no treatment or no treatment at this time. By the way, before scans picked up the bone lesions, I was told a similar protocol to yours but more frequent: labs every month and a PET scan every 3 months for the first year.

I am nearly 70, and don't have young children or grandchildren (yet) so I cannot imagine what it's like to live with this worry with your young child. Although as @jessica0 said, they could be the very best distraction to keep your spirits up! For me, proactive research (and that isn't just Dr. Google!), special moments daily with my life partner (who has MGUS), time with friends, visits with my adult children, sunshine and exercise keep me in good spirits most of the time. I still have days like yesterday where I can't seem to get out of my head, which is also understandable.

I wish you all the best in your own journey and keep laughing with your child!

Awesome ! Thanks for sharing! How did you know something was wrong?

I do not spend a lot of time on this site but my own experience with spleen involved marginal zone Lymphoma has led me to follow a site called https://lymphomasurvival.com/ It is a site dedicated to Follicular Lymphoma survivors and has a world wide following. I picked up on this site 18 years ago and have been following them ever since. The site coordinator, Robert, a survivor himself, provides monthly updates on the latest research. He also has documented what he calls a “working cure.” I feel that a lot of advice on this site has been useful to me in my own indolent lymphoma. The author is a well over 30 year survivor with follicular lymphoma who has had treatment 2 to 3 times. He follows the latest research on this type of cancer

Hi @dani349,
My enlarged lymph node was discovered incidentally in Nov. 2023 on a cervical spine MRI for chronic neck pain. It was identified as a mass so a CT scan picked up the possibility of lymphatic cells, which led to 2 fine needle aspirations that resulted in B-cell involvement. It was at that point I was referred to an oncologist in Jan. 2024 who ordered the excision, PET scan, and other imaging and my official beginning of this journey.

Thank you @bmisslich for recommending https://lymphomasurvival.com/ I will delve into it!

I have been receiving immunotherapy for the last six years going on seven & been doing much better year to year. I was diagnosed three weeks after I had my beautiful daughter & my wonderful son was only one at the time. There were lots of bumps along the way but my children were what kept me distracted and driven. My goal was to get back to caring for them like I always saw & dreamed about. When they were little they just didn’t understand that mommy had cancer & it was a normal thing to have their grandparents around who helped us tremendously. Now my daughter is now seven & my son is nine so we now have had a lot more conversations about mommy’s cancer. Actually the first conversation started very organically because my son, who was at the time in 1st grade, said that their fun run fundraiser at school was started because a student there had cancer. I told him that mommy knew her and her family because we had to do our cancer treatments together sometimes. He then stoped and said “wait, you have cancer”? He was of course shocked & my daughter & him had lots of questions. They now can see cancer differently though because our family has fully transitioned back to normal while I am still taking my immunotherapy. What they would expect from a mom I am able to do now independently. I enjoy taking back my motherhood duties that I fought so hard to have back. Evan though the days are long I still enjoy dealing with the everyday problems much more than any cancer related issues. When I have to deal with the cancer issues I have a wonderful family support system behind me and my doctor and nurses know me very well.
My best advice is to ask for the help & support with raising your family. Having my children around gave me that strength, determination, & ambition to fight cancer and bring the focus back to my family as primary and my cancer as secondary. My in laws went above & beyond their grandparent duties and our whole family was able to rebound off of it. My kids now have an extremely close bond with their grandparents too since they were so helpful through it all. I hope what I shared somehow helps you with your situation. I wish you the very best & enjoy every moment with your family.