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Follicular Lymphoma

dfinne
Posts: 4
Joined: May 2007

Hello all, I am newly diagnosed (3 days ago). I have not seen an oncologist yet and am a bit scared. Maybe some of you who have the same type of NHL as I can share your experiences as to what you've gone through up to this point.

Budski1279's picture
Budski1279
Posts: 19
Joined: Feb 2007

Hi Dfnne, My name is Bud.I was dx with follicular lymphoma back in December.It is early for you. You will need testing to find out what stage that your lymphoma is in. You will probably have a Cat scan and Pet scans to determine how far it has spread. I will tell you that mine responded very well to chemo and after three sessions I was cancer free. After you get over the shock of hearing you have cancer then hopefully you have a supportive family and faith that God will get you through it. Make sure you take a friend or spouse with you to the Dr because there is a lot of questions and info to record. Having a possive attitude and keeping my routine as normal as possible was a huge key for my progress. Good luck and may God Bless you in your new journey. You will be ok.

Lilly731's picture
Lilly731
Posts: 8
Joined: Aug 2006

Hello! I know that you posted your msg in early June and hopefully by now, you have learned more about your diagnosis. I just wanted you to know that my husband was diagnosed with follicular lymphoma (stage 4) last July and completed treatment for it in December. He is back to work, feeling great and going about his life in a very normal way. Stay positive and keep us posted! Best Wishes.

LittleDonna
Posts: 3
Joined: Jul 2007

Lilly: I know its been a while since you posted your reply, but I'm terribly interested in your husbband's case. It seems like he's the only other person on the planet with stage 4 follicular lymphoma. I'm really interested in knowing what his cancer was like... how did his symptoms start? did he have pain? did his lymphoma attack his bone marrow? does he still have pain now that he's in remission? I'm mid-way through my chemo and I'm still experiencing a lot of pain. My oncologist says that I've sustained bone damage due to the cancer. Has your husband experienced anything like this? I think it's wonderful that he's gone back to work. I don't know that I can go back to work... the pain keeps me from sitting or standing... Sorry to ramble on so much, but I'm desperate to meet people with similar symptoms and problems. Thanks

nikkismom's picture
nikkismom
Posts: 18
Joined: Dec 2003

hi there. my name is Charlene, I also had stage 4 non hodgkins lymphoma. In remission now almost 4 yrs.

chacha88
Posts: 1
Joined: Jul 2008

Hi. I have stage III Follicular lymphoma. I have been told to have stem cell transplantation. has anyone had that?

alihamilton's picture
alihamilton
Posts: 344
Joined: Jan 2004

I see this was posted nearly two months ago so you may be in treatment now or doing "watch and wait" I was dx a year ago with stage 1V (in my bone marrow) grade 1 follicular lymphoma. My enlarged lymph nodes were in the mesentery. Had six months of treatment and now feeling good again! I never had pain but I think it all depends where the lymphoma is located as to whether one gets pain or not. The worst part is that we are told it will come back and that is not a good feeling. The best way is to live for the day and not to think too much about the future.

I wish you well.

LittleDonna
Posts: 3
Joined: Jul 2007

Thank you, ali. I'm in the middle of my chemo, and the doctor just got back the results of a new PET scan which show "marked improvemement" and I am feeling better... and, I have less pain... but you're right, the worst part is KNOWING that it's going to come back and that's not a good feeling... but it's difficult to live for the day and not think too much about the future... currently, I'm in therapy and in a cancer support group... both are helping... and, it helps to have positive people like you on line... again, thanks for your input. Donna

aussiedeb's picture
aussiedeb
Posts: 5
Joined: Aug 2007

i was diagnosed with follecular lymphoma in may 2006,i have gone through 8 lots of chop chemo with rituxan and mabthera, it mutated right at the end of treatment and went into my bones,"collar bone shoulder bone an hip bone all on left side, i had 2 lots of eshap chemo then, thats 5 days straight chemo 24/7 which mutated at again, as since then i have no wheite cells or platletts,, been zero, for past 8 weeks, they collected my stem cells 3 months ago, but cannot use them untill i have some of my own cells in body, the doctors say they can do no more, and they said they will try an see i make it to xmas,they have given up,,i havent, i am going for a bone marrow test in 2 days time, as every week my platletts have dropped at least 5 points,every week, i am down to 20 at moment,but in 2 days i will be having a blood transfusion also, to help, they are pretty sure the cancer has gotten into my bone marrow,and thats why i am neutropenic now all the time,as its killing off any new cells be4 they can mature,this test is just to confirm it legally,the doctors here in australia, have told me that theer is nothing else they can do for me,no new trials,or treatments, they said sorry, but that is not good enough,i want to fight this cancer,not quit,i have had a positive attitude all along,and wont stop now,the cancer i have is a very rare type, no on in australia, or the world has had it be4,threre have been similar cases , 200 since 1920, but they have all been benine, mine is malignant, and now an agressive type,it was a slow growing cancer untill i had all the chemo,s and treatments,,it mutated into a severly agressive type in december 2006, thats when they found it in the bones, and now the marrow, to be told you only have a few months of life left is devistating, if any one knows of any new treatments that they have under gone please let me know asap, and i will let my doctors know of them also,i have read about taking high levels of ph? not sure what that is but if anyone knows id be very interested to find out more,"",what have i got to loose,""good luck hun with your treatments, just dony=t over do it,,as it may mutate your also, aussiedeb,

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