Recent diagnosis of stage 4

Hi Cormac and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have  Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, other type of incurable but treatable Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

It took a good 14 years before I needed full on treatment but when it was required I was given no option as I was on a Stem Cell Trandplant pathway.

Although I had about 600hrs of Rituximab as part of my 6 cycles of R-EPOCH and on the whole I had no real problems .

Rituximab on it’s own is often used as a less toxic ‘maintenance’ that can keep your FL asleep but fir how long?…… full on chemo may give you a longer remission before further treatment is required.

I always asked my consultant “If you were in my shoes what would you do?” and I did.

Lets look for some of the group members who have been in this position to pick up on your post. 

Always around to help more or just to chat.

Hi Mike

Thanks for the response and appreciate your help here.

I tried the "what would you do" approach but didn't get any clear steer from my hemotologist. He just said both were reasonable pathways. He did say Ritux didn't show any signs of offering any greater longevity but it did seem that if it could slow it down and delay the need for chemo that should increase longevity.

All very confusing so was hoping someone on here could give me their advice.

Regards

Cormac 

Hi again Cormac sorry for the delay in not getting back to you but I have been on a Lymphoma Action zoom for 90 mins

It is confusing, I often talk with folks who have the chemo first then have 2 years Rituximab maintenance.

I don’t know your age but some folks do find chemo challenging and like any of these treatments there are side effects and some folks develop ‘other’ health conditions…… I had no heart problems until had my final chemo ……. although I have had a lot of chemo,

Let’s see if any group member can help you out.

To widen your support base you may want to check out the Lymphoma Action.

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

They run regular Support Platforms..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

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

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Hi Mike

Again, thanks. Really appreciate the additional resources. I'll take a run through and see what's out there. The idea of a buddy service sounds incredibly helpful. I have no clue what's coming down the track and what I need to be doing/thinking about. Having someone who has walked the path would be a huge help.

Regards

Cormac

I am a Lymphoma Action (LA) Buddy covering my type of rare NHL. LA take great care in matching people up with buddies to get the best match and support so do talk with them.

FL is the most common type of Low Grade NHL so the various Online Support Groups will have more people with FL than the other types of Lymphoma……. there are 60 types and sub-types of Lymphoma!!!!!!

Always around to chat.

Which chemo are they offering? I don't think I'd voluntarily opt for R-CHOP but R-Bendamustine I would. Otherwise I'd try ritux and if it doesn't work, then go for the big guns.

Hi Londoner12, I checked and it's Obinutuzumab and Bendamustine. So sounds like Chemo it is then ;-)

I had a chat to my cancer nurse and she was also of the view that chemo was the right way forward.  Immuno therapy was looking like a bit of a sticking plaster.

My concern was that if we go straight to chemo then I'd lose the alternate option. That sounds like it's not a problem as it could be offered at a later stage if it would be helpful.

Hi Cormac yes there are various levels of chemos and other treatments for FL  so you are still on step one and let’s look for the O&B to do it’s job.

Thanks. All very scary at the minute. Just getting used to the idea that I have cancer and still trying to get my head around that fact that this is not curable. Doctors have been giving me worst case scenario (I hope) but reading through material online it seems that there are a number of options for treatment that should give me a good number of years. I'm 54 now and would dearly love to get some pension out of the government given the amount of tax I've paid into the system :-D

Yes lots of option available. Do be carful what you read….,, stick to the Lymphoma Action website as all the information is up to date and overseen by some of the top UK Lymphoma experts.

I started my incurable journey with my very rare and hard to treat type a ver 24 years ago….. I turn 68 in a few weeks and I intend to be around for a lot longer