I am a 50 year old cancer survivor that has had a recent recurrence of Non-Hodgkin's Lymphoma. Back in 2003 my left parotid gland started protruding and kept growing. After removing the gland the biopsy report indicated that it was follicular Non Hogkin Lymphoma. In the time shortly after the surgery I started to get intense pain between my left shoulder and spine. A MRI showed a tumor wrapped aroung my spinal cord and the the nerves leading to my arm. Next I had 18 radiation treatments to my left head, the front and back of my chest at the level of the spinal tumor. After that, I had eight weeks of succesive rituxan treatments. I was told I would need rituxan treatments every six months to keep the cancer at bay. I have gone through almost seven years (83 months) of rituxan every six months and then this May a mass showed up in my right hilum. Actually, during my quarterly exam with my oncologist, he thought that there was a nodule in my groin. *As a note of interest, do not schedule oncologist appointments the day before leaving for vacation - it really put a damper in your plans!* Anyway, the PET scan showed nothing in my groin, but something in my chest! Good call doc! He could feel a lump in my chest all the way from my groin! I mean he was pushing pretty hard, but still a great call!
I am going to get my port put in on Monday and hope to start chemo before the end of the week. I have had Bendamustine recommended, but my oncologist is concerned about the effects it might have on t cells and the implications for future bone marrow replacement.
Does anyone have any information on this?
By the way.....
According to the statistics published by the National Cancer Institute, since my cancer had not come back by 5 years, I am completely disease free. Well, I guess what Mark Twain said is still true - "There are liars, damn liars, and statisticians."
So sorry for you that it has returned. I am curious as to how often you were scaned? You saw the Dr. in May, when did you have you last scan before that? This is all new to me and I love to get info from folks that have been there, I find it more informative than the Dr.s. I was just diagnosed in May, FNHL in the groin, had it removed and did radiation. Another scan at the end of the year.
Thanks, and good luck, Stella (sorry no info for you)
I know a member here - Sharon aka "Shashelt" has had the Benda- She probably can help you. Also Greg Dafoe- you can email him personally if he doesnt see your post- he has his own website: NHLcyberfamily.org - you can find his email there somewhere. Sorry you have to go through this again. Keep us informed - Dawn
P.S. I like your Panther picture.
Thank you all for the information and the best wishes. Since this growth has shown up I've been doing some research. I've found some interesting papers, articles and stories that have been changing my ideas about the best choices to pursue in regards to beating cancer. It seems that for each of us, there are some major common moments, such as when I sat in front of the mirror and declared "I WILL BEAT cancer!, I've done it before and I will do it again!" We all have a moment when we make the decision to fight, and not subccum. I believe that somewhere in this journey there are moments of clairty: you know, standing on the mountaintop, cold, clear air in your lungs, staring at the horizon to horizon vista and really seeing it kinda moments. I know for sure that we must make our journeys as individuals, and I know that some of the time we are privileged to share the path with others. I've started a website to help with the journey: www.beatcancer4ever.com . I've included some information I've discovered, juicy tidbits from friends and colleagues, books, articles, web links, suppplements, anti-cancer t-shirts, my photgraphy, and even my first blog! I hope that all who visit leave with something that makes their day a little brighter.
Abundant Health to All,