Having Follicular lymphoma was a game changer

[Merrymary]

I've become way more happier to live everyday and feel lucky to gotten off so easily when I hear of other stories. The constant scan anxiety though is eating a hole in my immune system. Little things like constant cold sore breakouts eat a hole at my positivity. How can I stay on track?

[Shar0n Volunteer]

Hi Merrymary, I think we all go through this when coming up to a check up. I just had my latest check up last week and found I was quite anxious because there had been a slight increase in the size of a node in my neck. However, a chat with my doctor reassured me and we have decided to wait until next time before any decision on action is taken because I am otherwise well.

I think the key to reducing anxiety for me will be to focus on wellness strategies because when I know I am making a positive effort to improve my overall health, I can only be helping the situation. Good nutritious food and sensible exercise that we enjoy, builds our immunity and strengthens us to cope with whatever comes along. Adequate sleep is also vital. It's a very common anxiety so maybe others will chime in with their own coping strategies?

[Josie2rulrs in reply to Shar0n]

coming up on my appointment 3 month..

and there is always anxiety.....

doing the best to stay positive...

[wmay13241]

Consider trying relaxation techniques, imaging and prayer.

[Josie2rulrs]

do you best to stay positive. keep your mind focused that what we have is very treatable. At least that is what Ive been reading and in the end we will be fine.

When were you diagnosed and what stage and did you have any treatment.

[Merrymary in reply to Josie2rulrs]

I was diagnosed in March of this year with Stage One Follicular Lymphoma and went through 13 treatments of radiation which I tolerated without any problems. It's the wait and see and I'm set up for regular scans. I definitely need to be more positive and thankful.

[Josie2rulrs in reply to Merrymary]

wishing you the best...

what was your grade?

[Janekite2015 in reply to Merrymary]

As you have scans they'll become more familiar and routine. I had mantle cell lymphoma, but I'm three years out from treatment and still have some anxiety before scans. Remember that anxiety is just uncomfortable not dangerous and use distractions. The more you stay busy the easier it is.

[Shelley73 in reply to Merrymary]

Hi merryMary - I too was diagnosed with a fairly early stage 2 low grade FNHL in may 2016, underwent 13 radiotherapy sessions and am now on regular check ups with no bloods or scans undertaken....i think it's a little blind in terms of follow up but the doctors know what they are doing I guess and they rely on feedback for b cell symptoms from me. Feel very fortunate to not have undergone more severe treatment as yet and wish everyone well on their journey...xxx

[Merrymary]

Low grade

[Familye31]

Hiya im new on here.. I too have low grade stage 1a follicular NHL and on watch and wait diagnosed in November and im still very worried about the whole thing as my mum had NHL 11 yrs ago and died 6mths after diagnosis ... I feel at 52 my life is over and am very worried...

[Robin-Newman in reply to Familye31]

One thing I learned about any cancer. Every case is different. Each person is different. My father died a year after he was diagnosed with stomach cancer. When I was diagnosed with NHL Stage 4 for some strange reason not once did I think I would die. I focused on treatment. Is there a dark cloud following me around? You know it is.

Every six months I go for my check up. Each time I think to myself I can't believe I'm sitting in an oncologist waiting room... It's a part me now. My life will never be the same. But! I still have a life.

I have seen my son's grow up. Have familys. I've enjoyed having been here for my granddaughter and....My loving husband whom loves me to the moon and back. And my LOYAL friends who stayed .

Keep in mind not all cases are the same.

There are many types of Lymphomas

New treatments are available " chemo drugs".

Attitude. Get one...😊 You are a tuff little bird and will kick cancers butt! Talk to your doctors. Ask questions. Research. Speak up. Getting answers to your questions will help with stress. You won't be wondering what about this or that.

I will be thinking about you friend.

[BelindaTupper in reply to Robin-Newman]

Love your attitude Robin.

[Merrymary in reply to Familye31]

I have the same diagnosis and I'm also 53. Worry has not helped. I feel lucky to have caught so quickly. Both of my parents died of cancer. I wake up everyday grateful, pretend I don't have cancer and stay on the moment. I repeat Now to myself. I'll try to send you healing healthy vibes and stay positive for you. You are not alone

[Josie2rulrs in reply to Familye31]

please do not feel that way. I ve been 1 1/2 on watch and wait...it seems that what we have is very treatable and my oncologist told me that what is going on now with immunotherapy will be a game changer and possible cure it once and for all.

[Mblumb in reply to Josie2rulrs]

What kind of immunotherapy are you receiving?

[Josie2rulrs in reply to Mblumb]

no she does said that there are many coming up.

I am not on any treatment

[Merrymary in reply to Mblumb]

I had a short round of radiation and now I'm just in the wait and see category.

[Trevor93 in reply to Familye31]

Hello, I am new on here also. My Follicular Lymphoma was diagnosed in 2013 after prostate cancer op. Since had a Squamish cell carcinoma removed from my forehead. Have not had any treatment for the Lymphoma only regular 6 monthly blood test and chat with Haematologist. Please don't let the diagnosis get you down, it's a slow growing cancer so carry on with your life as you did before. Have good fresh food and exercise a bit. I was told red meat and dark greens. Plenty of rest also as it can make you tired, that's my only grumble now, but retired last year, moved to a new house and relaxing. God bless, read lots and ask lots.

[darlatoth in reply to Trevor93]

Hello, Trevor 93 Tell me more about the red meat and greens... I am 55... have FNHL, diagnosed in 2010-no treatment as of yet! My site is in a bad spot in the gut, so no radiation for me(radio onc. did not want to chance it as it is so close to many other vital organs)... I am tired and have issues with legs aching, some night sweats, but I am in Menopause and hot flashing like mad, so??? Other than that, just the constant anxiety is an issue. Diet is something that I am so curious about. I have read that meat is a catalyst for this disease and some have kept healthy eating mostly veggies and then, on the flip side, I have heard that some docs advise a lower carb and meat rich diet for us. Who told you about the red meat and greens and how is it all working for you?

[Trevor93 in reply to darlatoth]

Hi Darlatoth, my Follicular Lymphoma was discovered when I had my prostate removed, cancer, the surgeon noticed my lymph nodes were enlarged in the groin. One was removed, sent for examination, came back as FL. This all happened in May 2013. After seeing a Haematologist I was told I had probably had it for about 3years. To date I have not had any treatment , have had numerous scans and a bone marrow biopsy, which came back clear. Now on four monthly checks with Haematologist with blood test. I have swollen nodes in both groins , under both arms and in the neck. My next appointment is in March. The red meat and green veg was an advisory from the Haematologist a couple of years ago. What does it do, I'm not really sure! Guess it helps keep the blood count up and restore red blood cells? I do get the occasional night sweat , most uncomfortable, sometimes during the day if sitting relaxing. It's a strange disease, the only cancer you want to grow, until it starts doing that no treatment is given. I live my life to the full now, try not to think about the Lymphoma. I will be 70 this year, not going to spend my retirement worrying. Good luck to you in the future.

[darlatoth in reply to Trevor93]

Thanks so much!!! I am going to discuss the diet with my own Hematologist, in March, now Good luck to you, too!

[1976budhha]

GOOD COMMENT,,...1976budhha

[Josie2rulrs]

I just had my 3 month checkup and my blood work is also stable...

I like to pretend I have nothing and go on with my life....

but what is not stable is the 5 lbs I gained from holiday season...

keep positive...what we have is treatable from what I can see....

[BelindaTupper]

I find as I get further along in my recovery I hate the remaining maintenance treatments more and more. I cannot let myself go too far down that road though. I have to tell myself that it's the "thinking" that's the worst of it. I just h

I just have to walk through it and not "think" too much, then I'm okay.