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Anyone ever had follicular lymphoma?

loria_46
Posts: 5
Joined: Jan 2012

I had a lump removed from the left side of my neck a few weeks ago and they diagnosed it as follicuar lymphoma. I am trying to sort out which doctor to go with in the Indianapolis,IN area. Wondering if I should have a bone marrow sample taken, I am very overwhelmed at this point. If anyone has some advice I would appreciate immensely. Thank you for responding.

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

I have was diagnosed with NHL in 04 and had surgery on the left side of my neck.
and inside my cheek.
Then I was home free till 09, at with time had surgery on the other side of my neck.
was diagnosed with follicular NHL stage 4. It was also in my bone marrow. Had 8 R-Chop chemo treatments. Had several bone marrow tests.
Then did a treatment called Zevalin . So been ok since Dec, 23, 09.
Have to do my Cat scan February 3.
I suggest you find a good Oncologist and go from there. Hope that helps.Hilde

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

I have Follicular NHL stage3>(no bone involvement)grade2-typeA>(non symptomatic)slow growth indolent- diagnosed in June 2010. I had a bone marrow biopsy to finish out staging of my cancer and with in a month of finishing all testing I started 6 rounds of chemo,
R-CVP. If you click on my picture it will take you to my "about me" page which tells in detail what my cancer journey has consisted of. You can also view pictures in my expression page by clicking on expressions while at my about me page. In time(after you get the initial cancer diagnosis shock period behind you) you might want to fill out the "about me" page to give people a better idea of what you are dealing with. I am so sorry you are here, but you will find this a great place to come for comfort and guidance. We have many people here with Follicular NHL who are more than happy to answer questions and be your friend. Many others with different sub types of Lymphoma are here to help also. It's just a wonderful group of caring loving people to reach out to.
Best wishes...Sue (age 61)

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

I had already started a piece,but i had search request and i think i lost it so it may show up twice..
It so nice to have folks like you to talk to and find out the problem your having is not so unusal after all..
The advice you give is so considerate and usually points us in the right direction..
hows your status on your cancer?? talk more later caregiver,,

shelbymae
Posts: 8
Joined: Feb 2012

Sue just checking to see how you are doing...haven't heard anything in awhile.
hope you are doing well.
Shelbymae

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi I was diagnosed in Jan 2009 with Follicular NHL stage 3 I had no bone marrow test which my second Onc wished I had had before Chemo. I changed Drs. midstream. I had chemo(6) CHOP and 2 years of Rituxin. I am feeling wonderful, and feel blessed every day. Every day is precious. I feel great and have been in remission since June 2009. I wish you great results. Having great faith, great family, great friends and a positive attitude have brought me this far.

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

Joanie, do you feel cold even though the temp is 70*?? my wife is constantly cold then hot,, but mostly cold on this round 3 of cancer.. and she s really getting tired of all of it.. but i think we will be able to convince her to keep up the battle with this new drug treanda.. but we both believe GOD wll only give you what you can handle.. Our faith is very much in GOD her spirits are high.. but she does get those down times. not being able to afford to go places doesnt help that any..
I have found family have a tendicy to forget you may be still sick even though you re in remission.. they manage to see you on you good days not the one were she s standing on her head in the b-room or totally wore out from trying to do a little work around the house..
stayin away from public places i really believe helps keeps you from getting nasty infections..
We ve found people with cancer really biulds bonds with each other, we built some good bonds with some patients at Jewish hospital.. have a good day caregiver..

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi caregiver.
I was freezing. I always watched T.V with a blanket over my nose and I could not get warm. I saw today that they are in the 3rd clinical trial of a vaccine for NHL and about to talk to the FDA. That is great news. If your wife wants my phone # I will be glad to help her by talking over how she feels. My work email address is pickensj@pcsb.org and I will send you my phone #. I started a support group in my church and would be glad to offer her support. I believe we get more than we can handle alone, but with God's strength anythibng is possible. Keep the faith joanie

miss maggie
Posts: 929
Joined: Mar 2010

Dear Joanie,

I am beyond happy to hear how wonderful you are feeling. There is light at the end
of the dark tunnel. I am in remission also, but I have to admit I do worry sometimes
if things might change. Not too often.

Our friend Sue will be starting her second year of Rituxan. She seems to be during very
well with the treatment. Hopefully her results will be positive also.

If you don't mind me asking? How did you get away with not having a BMB??? LOL
And how did the doctor's stage you without the BMB? Very interesting. I do agree, it
is not a pleasant procedure. My right hip has not been the same.

All my prayers for continued blessings. Love Maggie

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

HI Maggie,
I went to a doctor and he didn't even suggest it. I did not like him at all and switched Drs. The one I have had ever since could not believe I was not given the bone marrow test. By then I had already had chemo. I usually feel great but my regular Dr put me on Crestor 3x a week, smallest dose. I have taken many statins and I can't becasue I get really achy the third week on them. I am off them now and I have been really achy for 4 days. If it is not better by Monday I am calling the Dr. Thank you for you nice note. I have not been posting much. I am so busy with my fifth grade class and tired when I get home. Take care and God bless you Maggie. You are such a bright light on this site.

boy34
Posts: 20
Joined: Aug 2011

a

boy34
Posts: 20
Joined: Aug 2011

Hi, Im 42 years old and was diagnosed back in July with Follicular Non-Hodgkins Lymphoma Stage 3 Grade 1.5! I had a node removed from my groin and also had a pet scan and then Bone Marrow sample should be taken to find out if its in there. Its not in my blood and I was told most likely if nothing shows up in your blood its not in your marrow! My marrow was clean. Anyway my docs decided on the wait and watch after months of testing to pin point the actual diagnosis. I also had swollen nodes in my neck area too and it was also in my spleen. I had a hard time in dealing with no course of action "FIGHTING"!!! I changed my diet a bit and within two week my swollen nodes went back to normal. I had a pet scan 3 weeks ago and my doc declared me in clinical remission being thhis cancer never goes away. It no longer shows in my spleen and my nodes are normal again and no uptake (no activity) He was amazed in such a short time period that this happend because of my diet. No other explanation for it!!!

loria_46
Posts: 5
Joined: Jan 2012

How did you change your diet? What are you eating differently now? That is wonderful news for you. Praise God.

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

Lori faith n god and support from your friends is a very cridical part of your procedure and keeping a very high positive attitude is very important.. caregiver..

loria_46
Posts: 5
Joined: Jan 2012

How did you change your diet? What are you eating differently now? That is wonderful news for you. Praise God.

boy34
Posts: 20
Joined: Aug 2011

Hi, Im 42 years old and was diagnosed back in July with Follicular Non-Hodgkins Lymphoma Stage 3 Grade 1.5! I had a node removed from my groin and also had a pet scan and then Bone Marrow sample should be taken to find out if its in there. Its not in my blood and I was told most likely if nothing shows up in your blood its not in your marrow! My marrow was clean. Anyway my docs decided on the wait and watch after months of testing to pin point the actual diagnosis. I also had swollen nodes in my neck area too and it was also in my spleen. I had a hard time in dealing with no course of action "FIGHTING"!!! I changed my diet a bit and within two week my swollen nodes went back to normal. I had a pet scan 3 weeks ago and my doc declared me in clinical remission being thhis cancer never goes away. It no longer shows in my spleen and my nodes are normal again and no uptake (no activity) He was amazed in such a short time period that this happend because of my diet. No other explanation for it!!!

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Loria - I've had indolent, follicular NHL, stage 4 bone marrow involvement since August, 2009. Priimary site in an abdominal tumor - did watchful waiting for 9 months, then a year of CFP-R and Treanda-R chemos. IF you haven't seen a good Oncologist by now, that should be your first step. On my first visit, my wonderful Dr. ordered a bone marrow test to find the stage. My local office of 9 oncologists is affilated with a major cancer research hospital and center just two hours away. I've been there at his suggestion for second opinions 5 times.

You'll meet many wonderful people on this site - Joanie, Sue, John were all here to great me when I first began my journey and they, along with many others, will be here for you as well. Our cancer is never curable but hopefully it will go into remission between treatments and you'll get your life back again for months. That's where I am now as I do a 2 year Rituxan treatment every other month with no side effects thus far. Joanie's right - faith, friends and family will make this possible for you. Prayers for your getting the right answers soon - keep in touch. Fondly, Fran in Florida

loria_46
Posts: 5
Joined: Jan 2012

Did you have pain before treatment was given to you? I was told by 2 oncologists to watch and wait for a symptom before receiving any treatment. I do have a sore hip and leg. I was told to see if it gets any worse. I am a 2nd grade teacher and am going back to school tomorrow for the first time in 5 weeks. My 2nd opinion told me not to get a bone marrow test because it was more than likely already in my bones. I will go back in 3 months. It was nice hearing from you. I wish you the best is sunny Florida. I'm looking outside from Indiana and just seeing snow. Thanks for your prayers.

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

hi cookingirl; im new here and i look forward to conversing with you in the future as my wife goes thru round 3 of her battle of the cancers..
we all just got to keep the faith caregiver..

Dsgranni
Posts: 9
Joined: Aug 2012

I was trying to comment and lost my page ? ! Will try again . . . I was just diagnosed with stage 3, low grade follicular lymphoma with a clean bone marrow. Evidently, my course of treatment will be Rituxan exclusively, at least at this point. Research on this treatment has been frightening in itself. Any advice about this infusion drug?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Dsgranni,

Have not heard from you in some time. Are you doing OK ?

max
.

kim23
Posts: 5
Joined: Jan 2012

I have the same cancer and its scarey at first but with treatment you can get back to a normal life i was in stage 4 in 2007 and have had no return of the cancer sine i finished treatment in August 2007 good luck

trustinJesus
Posts: 49
Joined: Oct 2011

I am trying to convince my parents to change their diet. I feel this is key. A member of my church had non-hodgkin's lymphoma I believe 9 years ago and last year she got thyroid cancer. She made the choice not to go the conventional route with chemo and drastically changed her diet. By doing this there is no trace of the cancer. You can go to Ilanashope.com to read her story.

loria_46
Posts: 5
Joined: Jan 2012

Did you go through a watch and wait period or did you receive treatment right away? My cancer is also stage 4. It was in my neck gland and is still in my spleen. I am supposed to just watch and wait and in 3 months go back to the oncologists for a blood test. I believe it is B cell also.

CountryGal7557
Posts: 165
Joined: Feb 2011

I wish I understood what oncologists are watching for? and waiting for what? wait for a mass or tumor to get a certain size? Is there better/longer remission if a person waits for more cancer to appear?

mine was NHL Stage IV B-Cell indolent(slow growing). 3 small masses were pulling the skin down on my left jawline. all the lymph nodes were surgically removed which provided valuable data for the oncologist to decide how to treat my NHL. I was told it didn't matter if it was Stage III or IV (includes spleen) the treatment was the same. Rituxan and Treanda. Reached remission after 4 monthly treatments. I've been in remission for 1.5 years now and feeling good.

Keep us posted and let us know how you're doing.
Janelle

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

Im like you country girl,, why wait and watch.. my wife started out with fillicular nhl, took rchop n 09 put in remission then in 2010 it came back and brought friend too, big B cell(aggressive) we did rice and bean plus stem cell transplant, did retuxin n july 11 and again n jan 12 and here we are in feb and pet scan says somethings back, going for biopsy mar 1 to see what has showed up this time and how bad,, WE NOT DOING THE WAIT AND SEE PLAN..
countrygirl, what can you tell me about treanda, Bendamustine treatments,, It sounds like it has done the job for you.. we re not impressed with sct process.. we only got a 1.1 year out of it.. thanks caregiver..

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

whats the little symbol behind your name,, I see it on a lot peoples names..

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Janelle,

I was diagnosed with stage 3, grade 2 Follicular NHL in Aug 2008. I did watch & wait for approximately 9 months.

FNHL is very slow growing so sometimes watch & wait is used to monitor the pace and progression of the disease.

It is also said that early stages treated too soon are less responsive to treatment.

Personally I was thankful for that window of time to come to terms with my diagnosis and research my options for treatment.

I started two years of Rituxan in 2009, finished my last one in Nov and am currently NED (No Evidence of Disease). Waiting for my next scan in April to re-confirm.

This is definitely NOT an option if the NHL has turned aggressive or shows a marked increased in it's progression.

Wishing you continued good health!
Cat

trustinJesus
Posts: 49
Joined: Oct 2011

My dad has diffuse large b cell non hodgkins lymphoma. He is definetly not on a watch a wait . His lymphoma is very aggressive. He had 6 rounds of rchop. After the 3rd treatment he had a clean petscan but after 6 it had come back and spread. He has to start r dhap treatment sometime this week. It requires a 5 day hospitalization.

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