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.

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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.

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