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follicular cancer

corinnet
Posts: 3
Joined: Sep 2011

Hi,

My name is Corinne and I am a 51 yr old woman who was diagnosed a year ago with Non-hodgins lymphoma. After 6 months of chemo ( with no change ) my oncologist took a wait and see approach. In the past month I have been finding swollen lymphs in my cheek, shoulder neck, and being very concerned was catscanned again.

NOW I am told I have follicular cancer, that there is no cure, with old medicine survival rate was 7- 10 yrs, maybe more with new meds. Well, that is NOT enough time for me and i was given 3 options, wait and see ( since i am otherwise in fine health with no isssues, start chemo again with a newer stronger med ( whose name i forget because i was in a fog ) or stemcell treatment. Can anyone give me any thoughts on any of what I have written. I have always been a very positive person, hope to remain so, but feel like i was hit on the back of the head with a pan today finding out all these things a year after being diagnosed.

The most upsetting part was just finding out there is no cure chemo can only prolong life, please any thoughts on personal experiences will be so appreciated. oxox

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Sorry you have to be on this site but you will find a wealth of support here.

Personally, I'm not very knowledgeable of follicular lymphoma but know of three
people who post regularly here and expect you will hear from them soon as
well as others.

What I might offer is a lot can happen in a few years and there is some very
promising research going on. Being a positive person will help you a lot
as well as the fact you are otherwise healthy. Humor helps me and I try to
laugh often (at least more than I cry or whine anyway).

I had no idea how much treatment and research had advanced with cancer
until my recent "(((WAPANG)))" on the head with a pan myself :).

I'm sorry I couldn't give you some specific answers you were looking for
but I wanted you to know I was listening and there will be others too.

[Added later: There's a recent post about follicular lymphoma:
http://csn.cancer.org/node/226167 ]

Big hugs,

Jim

corinnet
Posts: 3
Joined: Sep 2011

Cannot thank you and all the others enough for the kind words. I am going to Dana Farber on Monday for a second opinion and more information. Will keep updating, thanks again:)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

First of all welcome to the site you never thought you would be on. You will find the people here are very knowledgeable and can answer most of your questions. i have NHFL and was diagnosed in April 2010. First of all please stay away from the websites. They are fine for statistics,but we are not statistics,we are are individuals. Most are outdated. They have come a long way in treatment for Lymphoma and making strides all the time with newer treatments. It is not cureable at this time ,but hopefully it will be soon. There are always other options when one doesn't work. I have read the same thing as you about the average life expectancy. I have heard it is a lot longer now,but I do not know by how much. Someone on here will be able to tell us. They will be here answering your questions. Thats why I say you have found a wonderful site. Try to be as calm as you can till you find out more info.What type of NHL do you have and what stage and grade would help to know. Take care and keep checking back,you will get answers ,I promise. John

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Some quotes I found about "statistics":

The average human has one breast and one testicle.
~Des McHale

Statistics are like bikinis. What they reveal is suggestive,
but what they conceal is vital.
~Aaron Levenstein

Do not put your faith in what statistics say until you have carefully
considered what they do not say.
~William W. Watt

I could prove God statistically. Take the human body alone
- the chances that all the functions of an individual would
just happen is a statistical monstrosity.
~George Gallup

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

I love the first one! I had to think about it. Ha Ha! Thanks Jim! Those are great.

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi Corrine, I also have Follicular NHL. I was told the same thing that there is no cure for Follicular, but that it is VERY treatable and slow growing. I don't understand why you had 6 months of chemo with no change and NOW they want to do Watch & Wait? If it was advanced enough for chemo a year ago and there was no change it doesn't make sense to do Watch & Wait. I would STRONGLY recommend you get a second opinion immediately! There are many many survivors that have lived 20 and more years with proper treatment. Don't despair! There are new treatments! Please please get another opinion! Best of luck to you!
Cat

CountryGal7557
Posts: 165
Joined: Feb 2011

Hi Corrine, With the latest advances for Follicular NHL, the new term is "Living with Lymphoma" it's not curable, but HIGHLY treatable, thus the new term/phrase, so everyone on this site are living examples of how we handle "living with lymphoma" of any type of cancer.

I have the same questions as Cat. and have you had a bone-marrow-biopsy and there is no signs of cancer? could that be the reason for watch-n-wait? what size nodes are they?

I had Follicular Indolent Non-Hodgkins Stage IV. My treatment was 4-monthly Bendamustine (Treanda) and Rituxan. I had 'suspicious' cell in BMB, so my stage was IV. but treatment is the same for Stage 3 and 4.
Keep us updated and come back often for support, as everyone here is wonderful!
Hugs
Janelle =)

corinnet
Posts: 3
Joined: Sep 2011

I have no idea what size my lymnodes are, whether i am a or b cell,was told i have no stage?? its all crazy and this is a top doctor at a top hospital! But I am going monday to Dana Farber in Boston for a second opinion and some answers, will update, ty again so much:)))

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi,
I also was diagnosed with Follicular NHL a year ago June. I did the watch and wait for one month, but when new swollen nodes showed up along my jaw line, my Onc decided to stop waiting and start chemo. I did 6 rounds of CVP-R (cyclophospimide-vincristine-prednisone-Rituxan). Finished CVP-R in Dec 2010 and started Rituxan Maint in Feb 2011. I go in once every 2 months for my Rituxan infusion and will get it for 2 years. If memory serves me right, my Onc said after the 2 years of Rituxan is finished, we will then watch and wait, doing blood work every 2 months along with yearly CT scans. This of course would change if new tumors developed while doing the watch and wait. He told me I have many treatment options to work with if a recurrance happens, but said a stem cell transplant would be one of the last treatments he would use, due to my age. I had multiple tumors in my groin, stomach and neck. My diagnosis after having a groin tumor biopsied and a bone marrow biopsy showed..Follicular NHL(indolent, slow growing)-stage3-grade2-type A(non-symtomatic). When I found the first tumor in my groin I was feeling great..no weight loss, night swets, fatigue etc. I agree with others that you need to get a second opinion. Staging needs to be done and your type, A or B should be in your diagnosis by now. I would also think you should have had a bone biopsy done by now. It is scary to know that FNHL is not curable, but it IS treatable and can be treated for many, many years. We each are different in some respects as how we handle treatment and how well our treatments work for us, but one thing we all share, no matter what sub type of NHL we have is the fact we have cancer which is a very emotional thing to handle. This is a great group to communicate with and I hope you will keep coming back for support. Please let us know how things go for you. It's hard to do, but try to keep stress as minimal as possible.
Best wishes...Sue (age 60)

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Hi-
I am relatively new diagnosis; August 22, 2011. NHL, Follicular, Grade 1, stage 4--with enlarged abdominal nodes, lymphoma, causing stricture in my large intestine-- Oncologist also with "very treatable, not curable" (at this time)--because of the intestinal issue, chemo was recommended and started right away-- 8/31-9/1. 4-6 cycles, 3 weeks apart is the recommendation with PET to be done after every other cycle.
I certainly can't speak from long term experience--but I agree--if you have questions with what your oncologist suggested--get another opinion--look for the docs/specialty cancer clinics that have alot of experience/knowledge dealing with NHL--
Praying for you that you will find right doctor, right treatment for you and healthy response and long life!!
Certainly will find hope, friends, support, encouragement and laughter here--
All the best, keep us informed-- Susan

PS: Jim I love your humor and the statistical post!!!

rclaxb's picture
rclaxb
Posts: 13
Joined: Sep 2010

I was in the fog with my March 26, 2009 diagnosis. I was on Watch and Wait for several months until a second swollen node in my neck. So my doctor started R-CHOP, 6 treatments. I am now doing Rituxan for two years, every three months. I have 2 treatments left. My oncologist is a lymphoma specialist at Siteman Cancer Center in St. Louis. She has never said I have x number of years. She said my cancer is treated like a on going illness and can be managed, not cured. My last CT scans showed no cancer and have my next in Nov. 2011. It was shocked with my diagnosis but I have faith in my doctor. Be sure you are going to a lymphoma specialist if you can. I am fortunate to live within travel distance of a renown cancer center. She was not my first oncologist, but I was referred for a second opinion and possible clinical trial, but my insurance will not permit participation in trials, but I stayed with Dr. Barlett at Siteman. Keep you chin up, seek information, know as much as you can about follicular lymphoma and be pro-active. Keep a copy of all test results and have them with you at every doctor appt. and hospital trip, it can helpout. Good Luck and God Bless.

cabinlife's picture
cabinlife
Posts: 6
Joined: Jul 2011

Corinne, I was dx in June 2011 with fNHL; stage III; grade 1. I had a bone marrow test that showed no involvement yet. I am doing watch and wait. I recently read a book written by Betsy de Parry called The Roller Coaster Chronicles. I ordered in on Amazon for around $7. including freight. It was sooooo helpful to me. The author had fNHL and went through some failed treatments before using Zevalin. She has been in remission for many years now. She also has a website called lymphomabook.com. It has great info about lynmphoma. You may want to get that second opinion with an onc that specializes in lymphoma. Remember we are all in this together. I plan on dancing at my two year old grandson's wedding someday.
Donna

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I agree, get a second opinion. When I was first diagnosed in April 2006 I had Stage 1 B cell Lymphoplasmacytic lymphoma/MALT. After a couple of relapses it's now Follicular stage 3. Mine did transform, but it's still slow growing.

Please get a second opinion and you may want to get copies of your biopsy for confirmation of the sub-type.

Take care,
Beth

mgreen75
Posts: 1
Joined: Sep 2011

First time here. This is a great site. My husband has Stage IV NHL B cell indolent and we just were told by an onc optho that it is follicular. When he was first diagnosed they really did not know because his cancer goes from nonagressive to agressive back and forth. After the R CHOP did not shrink the tumors enough he is now on Bendamustine/Ritixan and interthecal Metho/Cytlanbex (spelling). They told us if this works then an allo stem cell transplant. My husband is only 54 and soon the short term disability will end. He has to go back to work with a full release in order to renew the disability. Praying his doctor will give him that release, if she doesnt we have lost his insurance. So much to think about and so pushed for time. I was wondering if anyone knew anything about Bexxar.
God Bless to All!
Melody Green

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

Hi ,
I am sorry you have to seek us out but having said that, there is always hope. I have
Follicular Non Hodgkins lymphoma. I started out with lymp nodes in my left cheek and then my left neck ,in 04 and had surgery and 22 radiation treatments.
Then went 5 years and it started on my right side.
This time it came back in my bone marrow also. So did 8 rounds chemo and then did a radioimmuntherapy called zevalin. Yes I was told also it is incurable. I am stage 4.
So I hope you get more information. And go from there. Keep your chin up . They do not have the last word. Hope you are doing ok. And hope I helped a bit.
Hilde

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