Follicular Lymphoma: looking to connect with others

Posted by caracello22 @caracello22, Aug 7, 2022

Hi everyone, I'm new to this group. I just received my diagnosis 3 days ago and am a bit lost about how to move forward. I have so many questions and concerns that I don't know where to start. My doctor didn't actually say what stage my disease is at, but I do know I have a tumor in my neck and another one in my groin, so I guess stage 3? I read my CT scan report and noticed it says something about what appears to be a 4cm cystic mass, possibly a lymphangioma, in front of my psoas muscle. My doctor didn't mention anything about that, but I'm wondering if I should be doing something to try to get rid of it.
My doctor seemed to think that since I'm so low risk, I should just go about life as usual. Well, my life as usual includes raising a 2 year old who is now constantly asking me if I'm ok. Do any of you have toddlers? How do you discuss this with them? Until this point, my husband and I were trying for one more child. As much as I hate to completely shelve that idea, I'm thinking we need to.
Thanks for reading. Advice would be appreciated, but messages from those who can relate will also be appreciated.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

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…


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!


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!

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"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!


Hi everyone,
Looking for people who can relate. I was diagnosed with follicular lymphoma last week and am trying to learn about the disease and unpack all the emotional baggage that comes with it.
I'm an American living abroad, and I'm hoping it's all right for me to participate here, as I have no information on support groups where I live, nor do I speak the language well (Swedish).

I posted a couple of days ago but got 0 responses, so giving it another try.

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I was diagnosed with B-cell FL a few weeks ago. The small lump that I discovered while shaving has grown a lot. I have been to 3 different hospitals for different tests, and was finally sent to the Southern Cancer Center for more tests and treatment. It was frustrating and nerve wracking. BUT; this morning I got great news; I won't need surgery, except install a portal below a collar bone. I won't need radiation, and I may be able to continue driving. The PET scan showed 11 tumors distributed in my neck, chest, abdomen, and pelvic area. That's 11 that were at least 1.5 cm, but there were plenty of others that were not measured. The oncologist says he plans on 4 chemo sessions. Treating a single tumor treats every one of them. Most of them will be gone after the first treatment. Any that remain will be greatly reduced. He has already prescribed meds for side effects.

Be of good courage, each one of you.


Caracello, thank you for the detailed reply. I hope Jessica will join us too.
By the way, I'm a professional horn player and played in many opera pits in Germany a couple of decades ago. I loved living in Europe.

Yes, I was referring to options like harvesting eggs and ovary preservation. These are things to make your oncologist aware of when and if treatment is required. It sounds like you're thinking otherwise at the moment, but it never hurts to mention family planning to your care team. They may presume this is not of interest to you since their focus is on your health.

Watch & wait is a common approach to follicular lymphoma as you can see from this related discussion:
– Non Hodgkin's Lymphoma- Watch & Wait Approach

Some people find it un-nerving as the name implies "doing nothing". I prefer the treatment approach to be called active surveillance since it is an active treatment of watching and taking action if and when necessary. Sometimes that isn't necessary.

@lisaok, who has teenage kids may wish to join this conversation too.

Here are several discussions about dealing with emotions and cancer in the meantime:
– Cancermania
– Stress Management for Cancer: Free online course from Mayo
– Cancer: Nothing about this is normal.

How are things going today?

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I would also highly recommend .
Highly informative site with great resources. I was successful at putting and keeping my f nhl in remission for 9 years using this site as encouragement and using a variation of his protocol.
I also loved green drink diaries blog! Courtney might be a great inspiration for you as a mom! She beat hodgkins naturally and has 6 children now!! Great site for moms!


Maybe you have already looked into this but you could look into some local community support to help with meals. Our church would do a meal train for my family every time I was discharged from the hospital. They would of course always ask me if they could.
Another idea is if you have a another mom that you’re of course comfortable with and trust & who is also willing could maybe watch your son for a couple of hours so you could get a break and have an opportunity to recharge yourself.
I know our kids gives us drive but I hope you can also find someway you can recharge and receive a little self care yourself.


Hello @caracello22,
I have been receiving immunotherapy for the last five years going on six & 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 turns 6 next month & my son is seven so we now have had a lot more conversations about mommy’s cancer. Actually the first conversation started very organically because my son 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 with raising your family. 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.

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I can't imagine how you must have felt being diagnosed just after giving birth. Thank you, jessica0, for your long and detailed reply. I put off responding until I had time and energy to put into a response. Well, that turned out to be a mistake lol. If I lived anywhere near my family, they would be more than willing to help, but they live on the other side of the world. My husband's family generally keep to themselves. We call upon his mother sometimes to babysit, but she's 74 and has gotten to the point where she's forgetful and doesn't have the energy to look after our very active 2 year old. My husband has just started a new job where the commute is an hour each way, so most of the housework, all the meals, and care of the little one (while he's not in daycare) is on me. I'm also up a couple times every night with the little guy to take him to the bathroom. I am exhausted, and also quite surprised at how well I've been able to pull through considering I have cancer. My husband has been sick for over a week, but not me. I frankly don't know how long I can go on like this, but I guess we moms of young ones find extra energy reserves when we need to? This mama is exhausted. I wish I had a strong support network, but I just don't. My son keeps me energized and focused. It's amazing how easily he can make me forget anything is wrong.

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