← Return to Follicular Lymphoma: looking to connect with others

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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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Replies to "Hi everyone, Looking for people who can relate. I was diagnosed with follicular lymphoma last week..."

Hi back at you, I’m in the United States. I have MGUS, a non specific condition that can progress into a number of different cancers, Follicular Lymphoma being one of them. My condition is precancerous as my blood and body determines what cancer I’ll finally get. At present, the direction I’m headed for is a Non Hodgkin’s Lymphoma. My bloodwork shows my B Cells are already involved and mutating, while my lymphocytes are below normal, my neutrophils are above normal. Platelets are nearly below normal while my White cell count is headed upwards. I’ve be diagnosed with Kappa light chain IgM immuglobulin with a level of M Spike at 48.89. I know I’m still in the process of getting NHL with my lymph nodes above and below midline already involved, including the Lymphatic drainage system blocking up.

Since you’ve been diagnosed with NHL, you might be able to clue me in on what I have to look for as my body progresses. I know it must be scary for you, being far from home, dangerously sick, with little resources to rely on. So you can talk to me if you want and we can comfort each other. @becky1024

I understand your concern for you son and the trauma of seeing your body failing you. I was just 7yo when my daddy was killed in a coal mining accident. It was such a traumatizing experience to me at that age, I mourn him yet today, 72 years later. In 9 more days (August 20th) at 11:45am, he left me forever and it won’t be to much longer before I join my family again.

You description was very scary to me because it’s happening to me exactly as you described your symptoms. It’s only been about 2 months since my lymph nodes started acting up. Like with yours, certain ones are bothersome. The left one under the jaw and neck, makes it feel like I have a sore throat but its not inside my throat. Both armpits make me feel uncomfortable when my arms are down but eases up when I put them up in the air. The right groin one is scaring me, it was the first one to act up besides the one under the left jaw.

I researched enough to know I’m headed for trouble. What makes this so messed up is the fact this all this is progressing directly from my Kappa light chain IgM MGUS rather than from the bone marrow or lymph nodes. With so many rare things wrong with me, that’s terrifying because it means I could be developing a very rare form of Waldenstrom Macroglobulemia which is an extremely rare form of NHL. If it’s true, I’ll be 1 of 3.5 people in the United States that have this form of NHL. It’s incurable, aggressive, does not go into remission and very lethal, over 80% die from it. That’s why I purchased my burial plan 10 days ago and picked out my headstone.

How old is your son? Try not to focus on the negative aspect with your condition. Stress is a friend to cancer. Try to do more things with your son, teach him things you may not be around to when he’s old enough. I once gave this advice to a man who’s son was taken away from him with no visitation. I told him and now you, plan for the occasions that you won’t be there to see them with him. A birthday, Christmas, graduation, whatever occasion you deem important between a parent and a child. Mark the occasion on a card and put a message to him from the future you. Then store them all in a place were he can’t discover and leave the whereabouts with your legal will. Hope this makes you feel just a little happier knowing you’ll be with your son in spirit if not in person.

Yes it is a scary thought to where my body is headed. My problem is to many major health problems happening at the same time and all potentially lethal. I try to keep focusing on the positive things in my life, but like today, my heart is acting up. Yesterday, the symptoms of the baddies feasting on my body had me crying as I looked in the mirror after showering. All I have left to my breasts is the mammal glands, I’m down to an A cup from a C cup, they ate all the fat that Mother Nature placed in them. So today I went out and bought new things.

I take no pain medication because how will you know if something’s getting worse if the drugs masks over the pain. So I developed a way to ease my pain but there’s to much of it now. The baddies must be in my rib cage, it’s really hurting right now and my lymph nodes are on the rampage too. In Walmart today, I was trying to brighten my day by singing my favorite Christmas song, Jingle Bells. The other week, I was dancing down a aisle when Bruno Mars was singing Uptown Funk. Another thing I do is to go out in the parking lot at Walmart when it’s raining and start singing “I’m Singing in the Rain!”

I remember when my daughter was that age. I think girls are so pretty at that age between 2 and 4. I also raised my grandson from a baby till he was 12yo. Never had a lick of trouble with either one, till she turned 10 but my grandson is in the military and doing great. She’s a nurse now and finally settled down. You and your husband just have the one child? Well, guess I talked to much again but I love to share my knowledge from almost 80 years on this planet. Take care, just take life one day at a time. @becky1024

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.