Follicular Lymphoma: looking to connect with others

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 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

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

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!

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.

I was diagnosed 9 years ago from an incidental finding from dermatologist on my r temple. Watch and wait as a stage 4 asymptomatic.
Post hurricane Ian devastation of our community and home, insurance cancelled, living in rentals, I found a small pea size lump unde my r ear in January.

It’s the size of a lime now. 3 new 1.7 cm lesions in spleen, a couple more neck, chest. Very active. Core biopsy shows the new who classification of UFL (unusual) high ki67 and MUM.

Still asymptomatic. Can’t decide if I should start Tx now (bendamustine/Rit) or watch & wait. Drs say I’ll probably need Tx in 6 mos. But this parotid gland is so unnerving as I’ve read how aggressive this tissue is…
Decisions

I'm 6 years into follicular lymphoma. I've done chemo twice. First time remission lasted 2.5 years; second time 1.5 years. For the past 6 months I've been taking a drug called Tazverik. Anybody have experience with this drug??

My husband was diagnosed with stage 4 small cleave cell indolent follicular lymphoma in 2008. He was given 4 treatments of a biologic medication and did very well. He has since had recurrence in 2011 and 2014, treated with the same regimen each time, and has done amazingly well overall. Since he was diagnosed, several new medications have been developed, so if there is another recurrence, there are many old and new options. There are many types of lymphoma but the treatments options are many as well.
Best of luck on your journey!
Katkir

"Amazing progress has been made in the treatment of Follicular Lymphoma!" I hope for all our sakes that this is true. I was diagnosed last summer, and my doctor said at that time that about 3 or 4 years ago, it was thought that significant advancements had been made in the treatment of follicular lymphoma. He said that it responded really well to chemo, but after some time came back with a vengeance. Hence the reason for putting me on a watch and wait protocol (that is, testing every 3 months and one CT scan every year) until treatment becomes necessary. Until that point, I get to discuss my case with my doctor once a year, if I understand correctly. At the time of diagnosis I had two tumors large enough to be measured (one was 2cm and the other 10mm, in the groin area [left side] and neck [right side], respectively), but now the one in my groin has gone way down in size, to the point I can no longer feel it. Hoping this means it's actually gone. Would you mind sharing what you know about current treatments? For what it's worth, I'm living and being treated in Sweden.
Wishing you good luck and good health.

Amazing progress has been made in the treatment of Follicular Lymphoma! I hope that the new meds work as well for other malignancies. I found out this morning that I won't need surgery, won't need radiation, will probably only need 4 rounds of chemo at two week intervals. I have 11 tumors that are at least 1.5 cm (about 1/2 inch) up to about 2 inches, and several others that were not measured. Treatment of one tumor treats them all no matter how many, no matter how large. There is reason to hope, so don't be discouraged!