Newly diagnosed

[Treehugger123]

Hello. Just diagnosed with grade 2 follicular lymphoma with no symptoms. Doctor says wait for treatment. Not sure what to do.

[jmcobb50]

I too am a watch & wait with stage 3 Follicular Lymphoma. Read, read read about is disease. I also got a 2nd opinion to validate W&W. I have stopped red meat and eat a lot more green vegetables and fruit. I drink alkaline water. I dramatically decreased my sugar intake. Cancer likes sugar and a acidic environment. Try to avoid stress and get adequate sleep. My oncologist said he has had patients on W&W for 20 years.

[wmay13241 in reply to jmcobb50]

Excellent advice! My wife has stage 4 fNHL. The sites I regularly use for fNHL research are lymphomation.org/#what-is-new and lymphoma.org

[Josie2rulrs in reply to jmcobb50]

yes that is true....fingers crossed

[BillieJean7 in reply to jmcobb50]

I was just diagnosed with fallicular lymphoma don't know the stage because I won't let them do another biopsy. What is W&W?

[jmcobb50 in reply to BillieJean7]

W&W: watch & wait. Treatment is based on symptoms and lab work and Pet scans. Typically I would think you would have a PET scan that will show if nodules show up in various parts of your body for staging.

[TezzM]

I am in the same boat as you. Am on "watch and wait" for the present with a 3 month check up in March. Dr explained to me that this is a very slow growing lymphoma and research has shown no benefit in using chemo at this early stage. Best to wait until it is neccessary. In other words keep your powder dry until you can see the enemy. Listen to your Dr and look to diet and exercise to improve your health, particularly your immune system.

[Shar0n Volunteer]

Hi Treehugger 123, welcome to NHL Friends. There is a lot of information here and useful experience from members. I can't add much to what the other two members have said - both excellent. Don't let the diagnosis get you down. Think of it as a (hopefully) long term chronic illness, rather than an immediate cause for alarm and action.

Many of us here are on watch and wait and are using the time to actively improve our health status every day. The hope is that we can keep it in remission for as long as possible. That also applies to people who have already needed treatment. There is as yet no scientific proof that what we do for ourselves is effective or how effective it is but it has a huge physical and psychological benefit when we rally our resources and work on our own behalf , while being closely monitored by our doctors.

[Josie2rulrs in reply to Shar0n]

well said

[Josie2rulrs in reply to Shar0n]

I spoke to a doctor who is one of the head of the country on LGFL and he told in the next five years they are coming out with drugs that will knock this out of the water!!!!!

he said to me to feel confident that I will not die of this.

[alicata1943]

I have to agree with all the above replies. I was on Watch and Wait for 4 years. I was on every 6 months check ups and then when my blood counts numbers started to increase I was on 3 month W & W. After being on the 3 months W & W for a while then my blood counts got to a point that it was time to start the infusions. I got 4 Rituxan infusions and I am now in remission. I was told the first 4 years to wait for the treatments as they would be needed later. The doctor was right. I have been back on W & W since August of 2016. I see my oncologist every 3 months. I have had CT Scans since I was first diagnosed and monitored with those too. Continue eating well and doing what your doctor says. The hardest part is the tiredness and worry. Try to put aside the worry as much as you can as it will wear you down more.

[Smileyman]

Some people cannot accept this watch & wait approach, but if you can it has many merits. There is no clarity for the best treatment, my gut feeling is to delay active treatment until you need it as this keeps all the medicines at bay and availabile for use a later time if your symptoms become more severe. Also with new drugs being introduced the treatment experience may be less difficult to bear, or lesser long term side effects.

Remember FL is slow growing, unlike some other cancers the long term prognosis is good and getting better.

[Smileyman in reply to Smileyman]

I will add that I am 57, was diagnosed in December 16 with stage Ii, the lump under my chin had been growing for over 2 years before diagnosis so in some respects I have been on "not watch & wait" for this period!

[R-16728]

This sounds very much like my original diagnosis. I think I waited three months, with regular weekly blood tests before the symptoms (night sweats) began to bother me. There's always a chance your body can keep the NHL contained just as it does after chemo. Sometimes remission lasts many years. I got five before it came the second time.

[Janekite2015]

Just relax. They'll monitor you, and as soon as it becomes more active, they'll start treatment. So get healthy. Eat clean, exercise. You have an excellent outlook!

[Mynhl1948]

Hi Treehugger. Cute name! My name is Ruth. This is the first time I've replied to this great site, although I have followed and read many comments. I was diagnosed with Stage 1 Diffuse Large B Cell NHL with an MRI on December, 2011. In my case, I had a very aggressive tumour on the inside wall (iliac wing) of my pelvis. It grew rapidly from September 2011. Even though it had only been 3 months, it was 9.5 cm by the time the MRI was taken. It's a bit of a long story how I was finally diagnosed, but i'll save it for another time. By the time I had a biopsy to determine what it was and other tests to determine my treatment plan, it was March, 2012 when I started chemo and radiation. (At this point, the tumour had grown much larger.)

I'm a "need to know" kind of person, so was happy to read all about NHL. When I went to meet my oncologist, I was given an excellent book called "Lymphoma Patient Resource". I explains in simple terms the different types of lymphoma with great illustrations to answer your questions. I live in Ontario, Canada. It is published by the "Lymphoma Foundation of Canada, lymphoma.ca If you live in the US, I'm sure there is a similar publication. What I understand from my "need to know" and questions like yours, I can understand when some people think as soon as we are diagnosed with "cancer", no matter what kind, it would be important to start treatment right away to 'nip it in the bud' so to speak. However, the way it was explained to me is that chemotherapy loves to attack active (aggressive) cancer cells, like mine, which was obviously considered "aggressive". The slower growing tumours are called "indolent". In that case, chemotherapy wouldn't be effective at this point, so they "watch & wait", and keep a close eye on the progression. Your oncologist will then determine when treatment will be effective.

I'm happy to say that I'm getting close to the 5 year mark and I feel very lucky that NHL is very 'treatable' and we have a good prognosis. How can someone with cancer say "I'm lucky"? Well, I was born a twin in 1948. My twin sister was diagnosed with a very aggressive type of breast cancer in 1998. She only lived for 2 more years and passed away at the age of 52, 16 years ago. I miss her so much. I am so lucky I get to work on my bucket list and watch my grandkids grow up. I also have an awesome husband.

So, Treehugger, keep asking questions and find your answers. Live every day with as much joy as you can muster. All the best! Ruth

[Hidden]

Hi Tree hugger, I was diagnosed with grade 2 fnhl in June 2016. I had symptoms and a large mass in my abdomen. I needed treatment immediately. I'd rather be in your shoes because I now have to hope that when I relapse, the next treatment will be equally as effective. Watch and wait gives you more time and more treatment options as time passes. I know it feels like limbo but because of the nature of the disease, you don't get anymore certainty post treatment. Take heart...

[R-16728]

In the early stages it's sometimes difficult to get an exact diagnosis ie. the specific type of cancer cell. In my case the first chemos were unsuccessful and I had changes made twice before remission won out. On my return bout, five years later, the same chemo wasn't effective... correction, the chemo worked but my body couldn't recover quickly enough to accept a second hit. Stalemate! No solution until they put me on Zydelig.

[Josie2rulrs]

I have the same except grade 1...there is not much to do....just try to live life to the fullest....and put it on the back of your mind...eat healthy, rest, exercise....you can be on W&W for many many years................

[Josie2rulrs]

that is correct. I am the same, stage 1 grade 1..

went to other doctors with same treatment W & W every 3 months

I guess we are "lucky"

[Cjjn3]

When I was diagnosed in August 2011, I had been dealing with unbearable burning and itching since February. Dr. Treated me with meds for everything associated with skin. Took lots of tears and determination till I found an internist that diagnosed the cancer. Was given 2-20 years to live because they said its so rare there is not much info to go with. Tried 3 different chemo before last one that cleared my skin. Now waiting for transplant. Also did alternative medicine and treatments. Lot of people had me in their prayers. Still alive and enjoying my family and friends! All the positive feedback I received definitely got me back into living! The best to all that are in this same trying time of life! We're going to make it " one day at a time"!!!!!