Hello Sosad,

I understand your user name.  Welcome to the board.  What has your doctor said to you about your diagnosis?  He/she is the person to ask.  I can share my experience with you which is I was diagnosed with Transformed Follicular NHL in August 2006.  I was told it was stage III, grade III.  Because the slow growing had transformed to faster growing, I was given treatment right away.  I had 6 rounds, 21 days apart of R-CHOP.  I then got scanned every three months and am now having them every four months.

When were you diagnosed? 

Blessings,

Jane

Yes, Sosad, I'm currently in remission on what is called the "watch and wait" plan.  I'm hoping I stay this way for a good long time. Your normal in your feelings of being on pins and needles.  A cancer diagnosis is a slap in the face to say the least.  However, with follicular lymphoma there are many treatment options and new ones are being found.  Most doctors, I think, treat it more like a chronic illness. 

We're here for you and will walk this journey with you.  Come as often as you like to read, post, vent, or whatever because the light is always on and the coffee always fresh as are any goodies. 

Blessings,

Jane

Hi sosad,

I know exactly how you are feeling. I was DX in May 08 at the age of 45. I have fNHL Stage 4 w/pretty heavy involvement in my bone marrow & it is thru out my body. I had all the tests as well as a second opinion. When my doctor could not get me into a trial he started talking about w&w. Well I was shocked to say the least! I thought no way! Why would anyone EVER choose that! Well after months of tests, appts, & discussions I finally decided to go on w&w. It was the right decision for ME. My white counts have been dropping & last I checked they were back in the "normal" range! I do fight off some fatique & I do have swollen nodes but I can deal w/that. As you will learn, there can be many side effects to the treatments. I am very comfortable on waiting until I HAVE to start treatment. Who knows maybe while I am waiting they will find a cure! As your dr might have already told you that your own immune system can sometimes effectively fight this battle for you. That is exactly what is happening w/me right now. Everyone has to search & find the answers for themselves but I did want to share my story so that you can hear from someone who made a conscious decision to go on w&w, even though my hubby wanted me to start treatment right away. I know this is a very difficult time for you & I hope you start feeling better soon & get some resolution about what direction you need to move in. When I was first dx I was in what I would call a VERY DARK place but I am much better today! It took months to get here! The people here on this board really helped me w/that so use us as a sounding board whenever you need to!

Good Luck!

Vickie

Hello

I have been newly diagnosed with almost the same but was never given the option of watch & wait! How can that be? I begin R-CHOP chemo monday and i'm so not wanting this!

some background:

i am a very healthy 55 year old who had a very VERY bad back ache. Long story short, MRI found 2 tumors squeezing my spinal cord (one reason why i could not walk so well), my T-9 vertebra was crushed (reason why i could not stand up straight), and cancer present in several more thoracic and cervical vertebrae; had back surgery Sept.29 2009 (1 day before my B-day) and have had every test you could imagine looking for a primary site but the CT/PET scan & bone marrow biopsy revealed many other sites (shoulders, pelvic bones, femur, left ribs, sternum). Have finished 15 days of radiation, port in place--but w&w was never mentioned and i would rather do that if it was/is possible. How do you feel? How have your check up been? Can the patient ask for this as an option? My parents live in fear that i will "refuse" treatment. i do not want to be in pain but i do not want to live a life of chemo sickness either.

sorry all this may sound naive but i just never have had this level contact with doctors before. As i said, i am rarely ill. can you or someone talk me thru what's about to happen to me?

Hi Beth.  So sorry you find yourself here among us, but we're here to support you in every way we possibly can, and I, for one, found it (and continue to) find the support offered on these forums irreplaceable.  I have a similar story, and to shorten it up, I was diagnosed by my physician with Sciatica due to pain so awful I could barely walk, suffered for two and a half months before I had an MRI which landed me immediately in the hospital.  After four days of testing and biopsies, etc., and steroids, I was pain free.  I also had tumor involvement with my spine, but from there our treatment varies.  Three days out of the hospital I was receiving RCHOP treatments and after each I had five days of 100mg Prednisone followed by a Nulasta shot.  June 30th of this year was my last RCHOP session and I just underwent a CT/PET which came back with continued improvement, which is so very encouraging.  I agree with Sharon that it seems your doctors want to get a quick jump on this as from your explanation, it seems to be in many various locations.  I, personally, did not have a problem with the chemotherapy.  Your doctors will offer offsets for various complications of chemo, i.e., meds for nausea, etc.  If I may offer a suggestion, try to arm yourself mentally for the changes you will endure with and after chemo so you're not blindsided.  We're here to answer any questions to the best of our experience, and to offer you hands to hold.  Maybe you could view the treatment as a good thing....going after and killing the monster within.  I wish your the very best and again, know we're here for you.

Kgirl