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living with Follicular Lymphoma 5 years

Posts: 3
Joined: Dec 2010

I saw my first physician with pain in my left side in 2007. The ultrasound revealed my spleen was swollen. My doctor said spleen's do that when a body is fighting off infection. I asked if I could see a specialist and she said that wouldn't be necessary. I found another primary and after my gallbladder was taken out I became sicker and sicker. My hair started falling out. I live in Florida and could never get warm. I would drag myself to work each day and sleep in my car at lunch to make it through the day. By 8:00 pm I would be asleep and the would go through the same routine. I had pain in my side and my right armpit area. After tests for lupus, Epstein Barr and varioud other diagnostic tests I felt a huge knot in my left abdomen area. He requested an ultrasound and the radiologist remarks were the mass had grown since 2007's first findings. On October 27,2010 my spleen was removed. I had four laproscopic incissions and a 9" incision down my abdomen. When my physician visited me in the hospital, he stated it was a big as a baby. I got pneumonia after surgery. I was home for 6 weeks and was happy to get back to work, hopeful I could have a good quality of life again.
After two weeks back at work and the nausea and vomiting continued everymorning as I was driving to work, I received good news from the Pet Scan. The nurse said the findings were clear and no evidence of cancer. Thirty minutes later my Oncologist called and apologized I had been given incorrect information. I was told I had follicular lymphoma. I visted Moffitt in Tampa and two weeks later was scheduled for 6 rounds of R-CHOP.
My employer was kind enought to let me work emails from home through the chemo treatments. It was hard, but I am the primary breadwinner of our house and could not live on STD income alone.
Most recent, I have had severe periphial neuropathy in my legs. I cannot walk most days. My physician stated I am depressed. I am depressed, but with counseling and how I am going to go forward with this chronic condition is taking some time. The R-CHOP has left many adverse affects in my body. I have horrible headaches, my legs feel like icepicks are stabbing them, A tooth fell apart after the second treatment and although the dentist placed a temporary filling in, I can't have the bone graft to repair the damage until all my treatments are complete in February 2013. I have a chemo induced cataract in my left eye. I cannot have cataract surgery until after my last treatment in 2013.
My physician's do not understand how I feel in my body on any given day. Follicular Lymphoma is a terrible thing. My immune system is gone. I'm horrified of germs. I was always a social butterfly and now live a reclusive life. Living with Pain, Chronic fatigue and not being around other people the way I once was able to has truly been an adjustment to my life.

allmost60's picture
Posts: 3184
Joined: Jul 2010

Hi Grace,
Sounds like you have been through a lot! I had a milder chemo than what you had, so my side effects have been minimal. I'm currently doing Rituxan maint every other month for 2 years, and just finished my first year. Hopefully in time some of your problems from chemo will start to get better. My doctor tells me every time I go in that it takes time, some longer than others,before we start feeling somewhat normal again. This cancer business is hard...really hard! Take care Grace and come back as often as you want or need, for support and understanding...we've all been there and know what you are going through. I will be finished with my treatments in Feb 2013 also. "Yeah"...for both of us!
Much Love...Sue (Follicular NHL-stage3-grade2-typeA-diagnosed in June 2010) age 61.

anliperez915's picture
Posts: 772
Joined: Sep 2011

Hi Grace;
I just wanted to say hi and let you know how sorry I am for the tough time you're having. This cancer stuff is really hard, some people have it harder than others. Hope everything starts to get better for you, I will definitely keep you in my prayers! Please take care of yourself!


Posts: 20
Joined: Aug 2011


I also have Follicular NHL Stage 3 grade 1.5! I was diagnosed just about a year ago and my docs decided to not to treat me at this time. I know its a tuff disease to deal with, i'm 43 now and dealing with differnt effects of this disease. When they removed my lymphnode to determine what type of cancer I had, they never told me I would have any side effects. Because I have one less node my left leg continues to swell on a daily basis and now I have to wear compression stockings. I've now developed Tempour Artertis, so they just removed my Temperal Artery to see if the cancer cells traveled into that area. Well turns out the cancer hasnt traveled there, but now they're saying its just my comprimised amune system which is causiing the condition. The nurse in my docs office says to me that this type of disease is just going to keep and Nickle and Dimeing me... Just with alittle BS stuff!! So its tuff like I said there is always something, but the good thing is your alive and you just have to keep on fighting your way through it!!! keep your head up!!

COBRA666's picture
Posts: 2413
Joined: May 2010

I was diagnosed 2 years ago with fnhl and I am in remission. I may be wrong,but from what I have read it appears the follicular is the easiest to deal with and control. Thats as long as it does not turn into another form.I could be wrong about this. No matter what kind of Lymphoma it it it is no picnic. I am just going by what I have read on here and some of the websites. I try to stay away from those websites if I can. If I am wrong about the follicular type please let me know. John(FNHL-4-1A-5/10)

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