Newly Diagnosed with Follicular Lymphoma stage 3 - 48 Years old

Hi Daniel646ba9 and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Follicular Lymphoma but for some context about me. I was officially diagnosed way back in 1999 at 44…… although I now realise I had most likely been living with with my rare (8 in a million) incurable but treatable stage 3. type of Skin (Cutaneous) T-Cell Lymphoma (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. for much longer.

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

My first type of Lymphoma is a slow growing Low-grade non-Hodgkin lymphoma like your FL and your FL like my first type is also seen as a life long condition.

but it one of the rather rare and unusual types of the 60 types and sub-types of Lymphoma

It was like having severe Psoriasis so I did have skin treatments but it took 14 years before things progressed…… exacerbated by me developing my second NHL before I needed full on treatment chemo etc.

Active Monitoring (Watch and Wait)  is a mind set.

Understanding that with low-grade NHLs like your FL there is not a limitless set of treatments. So only using treatment at the point they would be most effective us very important

I know people who have been stage 4 FL for many many years and as yet treatment was not needed…… and they continue to live a normal life.

Also important to get that the Staging in Lymphoma is rather different from solid tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies…..

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

I actually worked in a very demanding teaching job fir the first 12 years post my diagnosis.

As for treatment being less effective…… it’s not the case. My last treatment was in Oct 2015…… 10 years ago. I had an Allograft (donor) Stem Cell Transplant and I am still in remission. My first type of NHL is still classed as incurable but my team think that it is most likely been put to sleep……. But if it kicked off again there has been a few new treatments come on line over these 10 years……. They record my sr Ind type is cured.

I am 70 next week and living a great life.

Be careful where you look for information….. you will see that all the links I put up are taken from the Lymphoma Action website.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

I am sure you have questions, do ask them and I am sure that some of the group members will pick up on your post…….. but I am always around to chat.

Hi 

At the age of 53 last year I was diagnosed with FL and in three lymph nodes. Like you I wanted treatment and get it out but the team explained to me that treatment will not remove it for me but just help to reduce it. I will have FL forever as it is a non curable blood cancer. The stage etc is not like other cancers. I have had breast cancer and surgery etc for the removal. It took time for my head to get around this. 
I was on a wait and watch for a year where they closely monitored me and if anything changes or it is impacting me then treatment will be given to help reduce it. 

i believe from what they told me is that chemo is tough on the body and they don’t want to keep giving it. So if they can monitor and it is not impacting you then they would prefer that option. 
I would  recommend keep a note pad of any symptoms you may have and when you see them let them know 

I have symptoms that I did not relate to FL but it was. Therefore each appointment let them know how you are doing and if there is any issues you have been having everyone is different and for me it has spread to my sinus.   At the moment going through chemo but they have told me that this may not stop it spreading in years to come. It is clearly just doing what we can and keep a watch on it. 

here if you want to reach out with other questions etc. I am not an expert and everyone is different but I have a good listening ear. 

Louise 

1. Hi Daniel I'm 51 and in February was diagnosed with low grade follicular lymphoma I've just u dergone 7 cycles of chemotherapy and am now undergoing 2 years maintenance which is an antibody infusion every 2 months for the next 2 years. What you need to understand is that with our type of cancer it really isn't a death sentence my consultant assured me at the start of my journey this will not impact my life span expectancy! Also the grading is different from tumour related cancers a stage 4 isn't a game over situation it just relates to where 

Sorry it sent before I finished lol the staging just relates to where it is in one area or multiple sites.lg non hodgkins lymphoma isn't at this time curable but is soo treatable and they only give treatment if it's starting to impact on an organ (mine was impacting on tube from kidney to urethra) I was very lucky with chemo no side effects or hair loss just suffer from fatigue.try to remain positive and if you currently smoke try to cut down or stop as although smoking will not have caused this condition you will run a higher risk of secondary cancers,that being said try to remain active and keep positive! Throughout my treatment people have said they can't believe how well I look and if they didn't know I had cancer they would never had suspected it! Stay strong and as bonjovi said keep the faith here if you need to chat take care x

Hi Mike, 

Thank you so much for sharing your story, it is very much appreciated and glad to read you are doing well after coming through a journey like that. 

Hi Louise,  

Thank you very much for taking the time to respond and share, very much appreciated and helpful 

Hi Richie, 

I really appreciate you taking the time to respond, thank you.   Very glad to read you are looking and feeling mostly well other than the fatigue. 

No professional has yet advised that it will not impact my life expectancy and I have been fishing for those kinds of answers, seems they are reluctant to give them. 

The fatigue is the thing that scares me the most as I run my own construction business and apparently fatigue can last for some time after treatment but not always.

I guess I want to get to a place where I can go on holiday with my wife , enjoy a few beers and feel that life is worth living again.  Currently not feeling that way but it's only been three weeks since diagnosis

Thanks again 

Hi I was diagnosed at age 49  stage 3 Follicular Lymphoma I am 65 very soon.

There is another treatment option other than Chemo.

It will take a while to get your head round having Cancer.

Have you had any B symptoms Night sweats Fatigue etc.

Click on my name it will tell you what I had.

We are all different in terms of how much or how little treatment we will have or need and you can get other ailments.

Hi Doh,  

Thank you , that is very helpful for perspective,  that is very positive. 

I have note had any B Symptoms at all and my bloods were very good with high vitamin D. 

I have been starting to get my head around it slowly.  I too have chosen to stay on watch and wait surveillance. 

I have lost 10kg by diet and exercise in the last 10 weeks and plan on losing another 2 stone next year and getting super fit.   My idea is to keep the lymphoma at bay for as long as I can . 

My hope is that I never need Chemo and some other options become availabe to me. 

I don't want to down play what I or others have and believe me I have been through hell mentally over the last 3 months but it seems the message I am receiving from Doctors and others is that you can pretty much live a normal life ?   

Even if the Lymphoma progresses , you can have treatment and hopefully get in to remission for 8 to 10 years .... 

So if my assessment and understanding is correct, then things are not as bleak as I thought ....  

can you shed any light on this please ?  It would be appreciated. 

Totally understand your concern the fatigue for me isn't total can't do a thing I'm a postman and throughout it all I've worked walking delivering the mail now I can't do a full delivery I'm at about at 75% now and I do sleep when I get home which I never used to albeit an just an hour then key part is you must listen to your body if you are tired then rest just remember your body is fighting 24/7 it's fighting the cancer it will be fighting any treatment you have if you have to have a pic line or port fitted it will be fighting that too so it's key to be as rested as possible an exhausted body won't respond as well to treatment so take care