Late 30s and just diagnosed with Stage 4 FL -

Hi Tomtom24 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your diagnosis.

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

I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (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.

When it comes to Staging in Lymphoma it is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not.

As I said, 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.

Many people with FL can be stage 4 and not need treatment…… Lymphoma is a funny type of cancer but the most important thing to get is it is very treatable……. 

As an encouragement when I was first diagnosed in 1999 I was 43 and our two daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years then in late 2013 a when my second rare more aggressive fast growing Peripheral T-Cell I had 2 years full on treatment …..

But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 69 in Nov past and as a family we celebrated 9 years since my last treatment in Oct past and I am living a great life and we continue to look forward to what else life has in store first us to enjoy.

Any specific questions just ask.

Hey Tomtom

I'm stage 4 and have completed 6 cycles of chemo and am now doing maintenance treatment. Good news, you're young so will be strong going into treatment which really helps. I'm 55 and in pretty decent shape other than FL. I found the chemo much easier than I'd expected and was surprised how much I could still do. Maintenance is easier still. You will get curve balls probably but keep your eye on the goal and you'll breeze through

Hello there. 

I understand is a hard and daunting time for yiu and that is absolutely normal. 

I was diagnosed also in my late 30s and tool me a year to get treated as I started with stage 3 and then evolved to stage 4. I was absolutely terrified during all that time. NHS and McMillan "support" nurse en East Sussex ese were useless and dismissed me all the time during my follow up appointments, as soon as I knew would probably need treatment I was lucky enough to move to private care due to my job insurance. My doctor and Macmillan nurses have been amazing and made the treatment smoother and felt supported and cared for. 

Now I finished my chemo and having treatment as maintenance every 2 months. It went much better and quicker than I imagined. Was able to work most of the time with flexibility from my company. Apart of pain and side effects days post treatment and general exhaustion I was able to do "normal" life, ear everything and even going to the cinema and walks. 

The most challenging was the anger due to a very long grieving process and just having my partner as close support network the relationship was affected in a very bad way, luckily we have been able to be together again and I really appreciate his support along the way even when I turned in to bitter b**ch

I had psychological therapy all along, however at the end of last year my mental health was really affected due to the cancer treatment, probably due to steroids as part of each cycle and other life events. With mental treatment and continued therapy I am in a better place. I am in remission and hope to have a family when the maintenance is finished. 

As I said is a very hard and awful time emotionally and sometimes physically. I wish you achieve remission after treatment and feel free to contact here if you need to chat or more info about my experience. 

Hi Flor and I see it's your first post on the community so a warm welcome.

Navigating the Lymphoma journey regardless the type of Lymphoma can be ever so challenging...... I know this well as I have been on this roller costs for over 25 years but I am still here living a great life.

From my experience it's good to unpack...... be it on here, but you may also want to check out Lymphoma Action.

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.

They run various very active Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

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.

Hi,I was diagnosed with stage 4 advanced to bone marrow basically everywhere in 2016 I was 42.

I had 6 cycles of Bendamustine & Rituximab then 2 years maintenance,Into remission.

I've had no relapse until now,small volume relapse,now watch & waiting..

It's not like staging of other cancers,FL is a slow growing cancer and although incurable its manageable for many years & will relapse at some point.

I'm just short of 9 years remission. 

Wishing you all the very best on your journey.

Take care of infections/ viruses, is my best advice whilst having treatment.