I would like to know who here has NHL with no treatment and have been on Watch and Wait and for how many years....until it pops its ugly head again.
Since April 2015 I have been on Watch and wait with no treatment. one node taken out on my neck....nothing else...stage 1 grade 1...
I was diagnosed in 2014 with one node removed for biopsy and confirmed positive for follicular Lymphoma. I was offered extensive radiotherapy to my neck and lower face (to cover salivary glands). I turned it down due to the potential for collateral damage to surrounding tissue. I also had two bone marrow biopsies which came back negative. Within six weeks of the surgery, I developed several small nodes on the same side of my neck and one small one under my chin. So far these have not grown. Still on w&w.
I went to hospital 10 years ago with lump in my groin to be told it was nothing, I went back and fourth a few times about it but still told it was nothing, a year ago it got bigger so went to hospital to have CT scan and biopsy that’s when they told me it was lymphoma low grade, I’ve got them in my groin armpit chest neck and under my chin, I’ve been on wait and watch for 2 years, they have now all got bigger so going back in 2 weeks to talk about what treatment to have...
I was diagnosed December 2016 after removal on swollen lymph node under chin. This swelling had been detected pea size in 2014 but was dismissed by the GP. Two years later and having grown to 2cm in size I went back to the GP and matters progressed (frustratingly slowly) from there. A potential issue with my thyroid was also identified, I had double surgery, fortunately the thyroid issue was benign but I now take thyroxine for the rest of my life. The chin surgery bruised a nerve to the mouth, for several months I had a pawlsy however over time it has greatly (not fully) recovered. I did expect this to occur having noted comments on discussion forums for submandular salivary glands.
Ten + months on, I have several mesenteric swellings, last review consultation was at 4 months, next will be 6 months, unless my situation changes I will be discharged to GP care after 2 years of consultant visits. If I have my way this won't happen, would prefer annual check ups as an alternative.
My bloods are good, not yet had a bone marrow test, living life to the full, only suffer fatigue in hot weather, and am able to purchase travel insurance with ease, albeit with a surcharge after medical screening.
What's next - dunno! I go to the lymphoma association support meetings, one chap I meet has been on W&W for over 10 years and lives a full and normal life, so there is much to be hopeful about.
I will add I have had the winter flu jab ... never considered this before but because of the lymphoma things have changed .. for NHL patients it's free (NHS pays) and can be done at local chemists as well as doctors and hospitals etc
I was diagnosed with Stage 3A NH Follicular Lymphoma in August 2015 and on W&W. I had a biopsy, CT & Pet. Getting CT every 6 months and blood work every 3 months. So far so good. The nodes are decreasing in size.
Hi, jmcobb50... frannylmn again. I suppose the difference in our diagnoses (and isn't it grade 3A, not stage 3A? Such a complex disease!)... anyway, I think the difference is that my PET showed SUVs beyond what they should've been for FL... indicating there might be transformation going on. As I said, I'm doing Retuximab now and have my 4th treatment this Monday, then another PET a month later... Glad to hear that your nodes are decreasing in size, even without treatment. I'm hoping against hope that this disease doesn't affect my life expectancy...I'm feeling totally fine, no symptoms at all.
There are stages and grades. Since I have nodes above and below the diaphragm but no organ involvement I am Stage 3A (without symptoms). On biopsy I believe they graded me 1-2. I had no be symptoms. My SUV was not >13. I believe it was 7 but I am not at home to look. Did you get a 2nd opinion?
Diagnose a month ago with Splenic marginal zone lymphoma. Based on blood work had it at least 3 years. WW I have my next appointment in january and they will keep going every 3 months. My current Doc lymphoma experts has assure me this is very treatable and it should not affect my life expentancy I am going to MD Anderson in two weeks for a second opinion thou. May you all stay on WW as long as possible and then they can find a cure for this pesky indolent lymphomas
Hi I had splenic marginal zone also, 2014 I had my spleen out so far no further treatment required looking forward to many more years 😊
Hi, I have been on the 'watch and wait' regime for nearly 10 years. I had previously had a large cell lymphoma for which I had chemo. This time, no treatment and although I never feel particularly well,I am grateful for the health that I do have. I get good reports at the cancer clinic ie "your blood work is perfect" but I feel far from perfect. Could this be due to the natural progression of aging, or, an immune system that is sub par and struggles to do what it is meant to do. Since my diagnosis all those years ago, I seem to get every infection that comes along, and never really recover completely. ( I had very few infections prior to my diagnosis) Logically, could a cancer that affects the immune system, possibly cause the immune system to under function or over function ? I think it stands to reason that this could happen. I have tried many pharmaceuticals as well as holistic products and treatments. I have no confirmed diagnosis for my ailments and consequently no treatment. Although the chemo I endured the first time around was brutal, I did feel improved following. Not quite the case this time however.
I hope you feel better and better as time goes on...
I was diagnosed with MCL stage 4 summer, 2017. After having malignant tumor removed from my lung, no treatment, I am on w/w. Feeling great but somewhat worried about First checkup in 2018. Eating well, working out but at 79, I don’t think this is what will take me out.
I believe that we are fortunate to have a watch and wait protocol for our type of cancer. Not the case for those with a more aggressive cancer. What I did not know however, is that even though we are well enough to not be in treatment , by the very nature of our diagnosis we are susceptible to numerous infections, especially those affecting the sinuses and/or lungs. Apparently chronic sinusitis is very often the result of a below par immune defense, which might be the result of either the cancer itself, or the treatment which one may have had for the cancer. (Sort of like 'which came first the chicken or the egg?' I did not know this interesting little fact, and have wondered for years why I now get so many respiratory infections. I think that keeping our immune system as healthy as possible is the best thing we survivors can do.
I suffer from sinus infections about twice a year but have my whole life...
I too feel we are "lucky"......and yes keeping our immune system strong is the most important.
Scared for the future 
Follicular non Hodgkings lymphoma stage 2
New member here my name is Alan and I've just been diagnosed with FNHL
Relapsed Mantle Cell Lymphoma--I'm new here! 
