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New Here with Follicular

boy34
Posts: 20
Joined: Aug 2011

Hello everyone,

Heres my story....I'm 42 married with 4 Children, they are my life. Everything I do revolves around all of them one way or another.
I was recently diagnosed with Follicular Non-Hodgkins Lymphoma (A) Stage (3) Grade 1.5.. this all started on Memorial Day Weeekend with a lump right above my left clavical. A doctor visit along with blood work showed nothing, but the only thing she could tell me was that it was a swollen lymphnode. She advised to wait another 3 months to see if there would be any changes. I wasn't happy with that and insisted on further testing. She then set me up with two CT Scans, which again showed nothing but a swollen lyphmnode. Again my Doctor wanted to wait another 3 months or so to see if there is anymore progression. Again I wasn't happy with that decision..I insisted on wanting to see a specialist. She set me up with an Oncologist...I had to wait 2 weeks before I can get into his office. After 3 days into waiting of the 2 weeks ..another lump appeared in my left groin area.. They immediately moved my appointment up.. Went to the Oncologist for an examine...again Blood work all normal. on the same day I recieved (3) Biopsies...2 of them were negative and 1 came back suspicious of lymphoma...Pathologist suggested removal of the node in the groin to be sure...The Oncologist wanted a PT Scan...a month and a half later we had some sort of road map in where we're going...Next a removal of the Node told us what I had. My Bone Marrow is clean for now... 2.5 Months later and a second opinion later...The Docs all agreed that we WAIT AND WATCH... MY question is ...Has anyone been in this mode and required treatment and what type of treatment you recieved?..How long after the wait and watch did you need treatment?
Stay Positive People and Thank You for letting me vent

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

Hi,
I did the watch and wait for a month. Diagnosed with FNHL-stage3-grade2-typeA-in June 2010...(age 60). I had swollen nodes in my groin, abdomen and neck. After 6 rounds of CVP-R (chemo) all of the tumors shrunk and my cancer is now considered stable. Currently I am doing 2 years of Rituxan maint..1 infusion every other month...just finished my 4th...(12 more to finish). Now I watch and wait between infusions and hope the Rituxan keeps me stable with no recurrance. I do try to stay as positive as possible, and so far I am doing good. I'm so sorry you have to be part of this group, but since you are here...you won't find a better group of caring supportive people to join up with. I'm sure others will tell you their "watch and wait" story, as many in our group have done it. Take care and let us know how you do. Sue

She514's picture
She514
Posts: 47
Joined: Mar 2011

Hi,
I had appendicitis in January 2011, CT scan in ER showed mass of "swollen" lymph nodes. ER doc called suspicious of lymphoma. Referred to oncologist after done healing from appendicitis. Had another CT scan, same results. April 2011 Core needle biopsy to retroperitoneal, results: probable B Cell Non Hodgkins lymphoma. Unable to determine subtype. PET scan shows activity in groin, retroperitoneal, axillary and neck. Onc wants to do axillary node biopsy to find out what subtype but states the "plan" would remain the same: Wait and Watch. I declined node biopsy for now since I see no reason to go through the biopsy because the plan remains the same. I have lab work and Oncologist visits every 3 to 4 months. I know it's hard doing nothing but I've done my best to not dwell on it. I have changed my lifestyle and eat more healthy, lots of organic. I was 56 when diagnosed.
If it's any consulation my Onc states he has a patient in his 12th year without any treatment...I'm shooting for 20 years! I'm glad you found this site, you will find comfort in the others experiences...I have!

Rosie

violinist1
Posts: 33
Joined: Aug 2011

Hello,
I'm so sorry that you have been goung through this. I was diagnosed with follicular nhl in mid april, and it wasn't until june 3 that we had a definate plan, after getting a second opinion from a well known lymphoma guy. Left groun node was enlarged and removed, only cancer found in whole body. I understand exactly what you describe. Maybe another opinion is called for? Although watch and waitcis state of the art in manyplaces, the have to take into account your desire todo something. However, i feel compelled to say that whatevereatments they may give you, it isn't easy, no matterhow much they downp,it. I had radiation, and i was very sick, and they still practically deny it every time they see me.
Ithink watch and wait isvery, very hard emotionally, but there is also the needto "save"certain really effective drugs for use in the future if needed, rather than use up some options right away. Iwanted to take rituxan, and i was advised to save for future and go with radiation. Now, i can't be radiated in the same place again, so that was a choice i made.
Sosorry for you to be right in it

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

Hi Boy34, I also have Follicular Lymphoma, Grade 2, Stage 3. I had the same lump over my left collar bone thought it was from carrying a heavy purse, then I had swelling under my arm in my armpit and realized this was more serious. I RAN to an oncologist and had the node removed under my arm which is how I was diagnosed. This was in August of 2009, I was 46 years old with a daughter and newborn granddaughter living with me. I was frantic when they told me to "watch & wait". I had a bone marrow biopsy which was clear and PET scan. I did watch and wait for 9 months. The next PET I had showed an increase in intensity of all my nodes, but especially a spot on my hip. My doctor decided that it was time to start treatment. I have been having "Rituxan only" treatments every 6 months for the last 2 years. My last one (hopefully) will be in October. Rituxan is mild compared to chemo and radiation! The side effects are minimum and as of my last scan in May I only have one TINY node under my arm showing on the PET! My experience is that "watch & wait" is OK as long as you are being closely monitored. Pay attention to your body especially for night sweats and fatigue and communicate with your doctors. Wish you the best on your journey and we are here for you when and if you should need us! Take Care! Cat

Keith1961
Posts: 10
Joined: Jun 2011

I have follicular lymphoma of the GI Tract. I am also on the "Watch and Wait" path. This is a very common approach for docs to take with this disease. Rituxan is a very good treatment, and my Stanford docs say wait until you absolutely need it. If you use it too early, it may not be as effective when you really need it.

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

Hi Keith! If you don't mind me asking, how were you diagnosed? I have FL in just my lymph nodes (that I know of!). I hadn't heard that Rituxan loses its effectiveness. My Onc and I definitely felt that the time had come to do something. The Lymphoma was increasing in intensity and if we waited any longer it might get out of hand, but I wasn't severe enough to start chemo. She did tell me it's not water and it can't be used like it is, but after these treatments I shouldn't need chemo until I'm 80! (I'm 47). I'm thinking there better be something better than chemo by then! Maybe like a cure?! Hope you have a long "watch & wait"(as hard as that is, treatment is even harder).
Cat

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

Hi Boy 34. I'm 68, NHL, Follicular, B cell, stage 4. Diagnosed two years ago. Just one large mass in my abdomen that showed up on a CT scan for something else! I did watchful waiting for 9 months for the same reasons Violinist's post so well explained. They didn't want to use treatments that couldn't be used a second time AND as long as my own good cells were fighting the cancer, they didn't want to destroy them with chemo. My mass is deep near the pancreas and entwined with many blood vessels, so it's inoperable. I was fine with WW since I had NO symptoms at all - no night sweats, fatigue, etc. - felt perfectly normal. But my 3 adult children in the northeast were not happy with being told I had cancer and doing nothing about it. My local Oncologist in FL asked if I'd like a second opinion at Moffitt, a top cancer research and teaching hospital in Tampa. My son flew down for our appt. with the Head of the Lymphoma Dept. He and 5 "fellows" explained so very well the reasons for using that option (believe they even call it a treatment) that son John went home and assured his sisters I was doing the right thing. That was Sept. - 9 months later, still with no symptoms but shown on a CT scan and blood work, the tumor was growing fast and had become the size of a large grapefruit and it was time to begin chemo which started as soon as my Port was installed. Please don't have any fear - if your Oncologist recommends your waiting, it's for good reasons. Let us know how you're doing and best of luck - Fran

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

This is my first time on the site. Received diagnosis, Grade 1, Indolent, follicular non-hodgkin lymphoma, 8/22/2011. Due to symptoms and narrowed large intestine- chemotherapy is to start very soon Bendamustine/Rituxan. My hematologist/oncologist--very straightforward about disease and treatment---symptoms to diagnosis in under a month, though NHL was an unexpected diagnosis! I appreciate the information here and will appreciate any info/insights re: chemo--- and certainly appreciate prayers--

violinist1
Posts: 33
Joined: Aug 2011

Dear gigi,
Wow, that sounds like really fasr work up and decision making! Wht do you mean by oncologist was straightforward about disease? Hope your time with chemo starts out ok
It must be a lot of info in an exteremlyshort time for you.

boy34
Posts: 20
Joined: Aug 2011

Thank you everyone in the responses! Its nice to know your not the only one with this crazy disease. I wish we all didn't have it, but its not the case and we have to stay positive! GiGi that does sound pretty quick...but my doc did tell me that could be my cource of treatment if I ever needed it!

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

Hi Fran ,

My name is Hilde and also have Follicular Non-Hodgkins lymphoma, stage 4. But with bone marrow involvement. I had this since 04 at that time I did antibiotics and tried to see if I only had a swelling in my neck due to an infection. So messed around with it for three month. Did the biobsy and blood work and nothing shows up. So they finally said lets take it out. Well it came back Non Hodgkins lymphoma. It was in my submandibular gland and in my cheek. Well did 22 radiation treatments and was home free for one week away from 5 years.Then it came back with a vengence. Also in my bone marrow. Then had a port put in and did 8 treatments of R-Chop and then several bone marrow tests. YUCK , Then on December 23,09 did Zevalin. So have been in remission since then, just wanted to tell you sometimes
you just do not know which is the best way to go. I wish you well.
Hilde

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

Hi Hilde - thanks for writing. So you've been in remission two years from Zevalin? I talked with my Oncologist yesterday about that - also called RIT? We're waiting to see if my PET scan a few days ago shows my tumor is small enough for Zevalin or Becaar (?). I was told at Moffitt it can't be any larger than 2.2 cm to do RIT or the meds can't get into the tumor far enough to be effective. After a year of Treanda/Bendamustine/R it's down from 15 cm to 3.9. But still not small enough! I'm assuming your tumor/tumors were smaller than that or do you know? My bone marrow involvement was 25% when I was diagnosed two years ago but Dr. says it will be lower with chemo.

I wish you well too! What a tough disease we have, but hopefully prayers and faith will see us through - Fran

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