Emotional Roller Coaster Ride.......

sdevilbiss
sdevilbiss Member Posts: 41 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I have had NHL low grade in the abdomen for 5 year with no growth. The last CT scan showed "something" in the left arm axillary. Oncologists sent me for an ultrasound to pinpoint and get a core biopsy. Well it didn't show on the ultrasound. So now in OCt. Radiologists can't agree on the positioning of the "something" lymph nodes or vascular. Could be just inflamation. I'm going to have another CT in Oct. and they are going to review again. I had breast ca 14 years ago with surgery. Oncologists feels it is doubtful a return of the breast ca in the lymph nodes. Just needed a little support from anyone out there who has gone through this whole miserable cancer thing. Just needed someone to vent to who has been through what all of us cancer survivors have to go through. Fear, depression, devastation, elation, thankfulness. So MANY EMOTIONs and such a roller coaster ride. Thanks and bless all of you who are on that roller coaster ride with me. Sandee

Comments

  • tobiano
    tobiano Member Posts: 5
    #2
    Do you have MALT Lymphoma?
  • mammer
    mammer Member Posts: 3
    #3
    my wife has low grade, folicular, b-cell, non-hodgkins lymphoma that has now been less than adequately responsive to two different chemo protocols...probably will be talking about stem cell transplants in a couple weeks...when first diagnosed the concern was raised due to somehting noticed on routine mamogram (she had a wire biopsy done two years ago due to a suspicious mass)...after a secong diagnostic mamogram, our doctor called happily stating that she did not have breast cancer, joy, relief, etc...shortly after she returned to doctor due to severe abdominal pain...just from his expression it was clear there was a problem, after a biopsy of a lump under her armpit (that thte docotr said was not significant just a few weeks earlier)and a cat scan, she got the non-hodgkins diagnosis..."softball" sized lump in her abdomin...after a couple chemo treatments her right side of chest cavity filled with fluid and she had difficulty breathing...after another round of chemo, no change, changed chemo to more aggressive protocol (lost her hair) and drain the chest cavity...now she breathes better, but we are anxious about the upcoming (apparently inevitable) consideration of mega doses of chemo and stem cell transplant via a donor (as she is not cancer free)...sorry to change the focus from your concern...just wanted to express that YES this is a roller coaster ride (and not an enjoyable one i might add), and i am sorry that you and your loved ones have to go through this as well...it is not something that anyone shold have to experience....keep hopeful!
  • tfitz
    tfitz Member Posts: 4
    #4
    Well I definatly know what you are going through. I was diagnosed with nhl for the 2nd time after being in remission for 7 years. I was diagnosed a month ago so all of the tests and cat scans are fresh in my head. I never thought that it would come back. I was going away to school and moving in with my boyfriend. It could not have come at a worse time. Just stay strong because I am a very rare case and it is very unlikly to come back. Best of luck to you and dont dwell over this till Oct. live your life, thats why you saved it. :)
  • sdevilbiss
    sdevilbiss Member Posts: 41 Member
    #5
    mammer said:

    my wife has low grade, folicular, b-cell, non-hodgkins lymphoma that has now been less than adequately responsive to two different chemo protocols...probably will be talking about stem cell transplants in a couple weeks...when first diagnosed the concern was raised due to somehting noticed on routine mamogram (she had a wire biopsy done two years ago due to a suspicious mass)...after a secong diagnostic mamogram, our doctor called happily stating that she did not have breast cancer, joy, relief, etc...shortly after she returned to doctor due to severe abdominal pain...just from his expression it was clear there was a problem, after a biopsy of a lump under her armpit (that thte docotr said was not significant just a few weeks earlier)and a cat scan, she got the non-hodgkins diagnosis..."softball" sized lump in her abdomin...after a couple chemo treatments her right side of chest cavity filled with fluid and she had difficulty breathing...after another round of chemo, no change, changed chemo to more aggressive protocol (lost her hair) and drain the chest cavity...now she breathes better, but we are anxious about the upcoming (apparently inevitable) consideration of mega doses of chemo and stem cell transplant via a donor (as she is not cancer free)...sorry to change the focus from your concern...just wanted to express that YES this is a roller coaster ride (and not an enjoyable one i might add), and i am sorry that you and your loved ones have to go through this as well...it is not something that anyone shold have to experience....keep hopeful!

    Thanks so much for your reply. Never apologize for expressing the "emotional roller coaster ride" that you are going through. I positively wish the very best for your wife. I had a CT scan as follow up on Sept. 26. Oncologists are following it pretty closely. Won't know until this coming week. I have a full time job and thank goodness that keeps my mind off of myself. Thanks for sharing what your wife is going through. It is comforting in a "odd" way to know that although we do not know one another we share the same feelings and the same hopes for each other and for a cure. We just gotta keep our chins up and our thoughts positive, albeit it is hard on this "roller coaster ride".
  • sdevilbiss
    sdevilbiss Member Posts: 41 Member
    #6
    tfitz said:

    Well I definatly know what you are going through. I was diagnosed with nhl for the 2nd time after being in remission for 7 years. I was diagnosed a month ago so all of the tests and cat scans are fresh in my head. I never thought that it would come back. I was going away to school and moving in with my boyfriend. It could not have come at a worse time. Just stay strong because I am a very rare case and it is very unlikly to come back. Best of luck to you and dont dwell over this till Oct. live your life, thats why you saved it. :)

    Thanks for your reply, TFITZ. I'm working full time which helps me to not dwell on myself. I'm sorry this happened to you again. It just isn't fair. I hate CT scans. I hate the feeling it gives me and drinking the barium is almost unbearable. I always do it after work so that I am so busy I don't have time to ponder on it. The CT scan I had in July was a bummer. The dye infiltrated my arm. It was so painful and my arm at the site of the infiltrate swelled up like a baseball. The tech made light of it and said it was my fault because of the way I was holding my arm over my head. I lost it with her and told her she couldn't begin to know how I felt. She was very rude. I only wish the very best for you. Thanks so much. It is so comforting being in communication with others who share this same "roller coaster ride". I hope and wish for you is that you can continue with your plans for your future. Best of Luck!
  • liz45
    liz45 Member Posts: 1
    #7
    i was 38 when i was diagnosed with 4th stage non hodgkins contain to spinal its been seven years knock on wood a little advise good sleep even if you have to take a pill stay on a schedule had z crazy life at the time, working father dying of cancer while in my care so if that's the one thing i have to advise people is eat right SLEEP GOOD immune system stronger with sleep. know what u are talking about with a roller coaster ride. wrote a poem and one of the lines is with every blink of your eye is the way it feels having this disease. it gets better with time. instead of every blink of my eye now it just sits on my shoulder and taps on it. first time i have done this daughter type half of this iam a one finger typer slow tring to learn . do you feel alone no one can uderstand but people thats been ther i hope this will help you i can feel what you7 are going thew iwould like to send you the biggest hug a can hope to here from you liz45 xxxxxxxoooooo peppermintpatty45@juno.com

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