Hi Guys
Just wanted to drop a line on here just to keep in touch with the group.
I've now completed cycle 3 and just had my blood tests for cycle 4. So far the treatment has been smooth sailing. I had a very low heart rate on cycle 1 but got reassurance from a cardiologist that everything was okay with the heart and they've just put me on asprin and statins as a precaution.
So the message here is one of cautious optimism. Chemo and immunotherapy can be easier than predicted. My mid point PET CT was very encouraging with good reductions in the nodes. I'm getting the usual fatigue and chemo brain but it's manageable and you can tough through fatigue and still have fun when the sun's shining.
I'm optimistic about the next 3 cycles and am looking forward to completing the treatment in a couple of months and hopefully getting into a prolonged remission. I know it's a lifelong illness and that I'll always be looking over my shoulder for infections etc but today as I sit here preparing for cycle 4 the world is not as scary a place as it was 6 months ago. If you're embarking on this journey, keep your head up and enjoy the fun moments that come along the way!
Cheers, Cormac
Hi James….. yes “a few years out” = 8.5 years since my last treatment.
I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 at 43 years old with a rare (7 in a million), also incurable but treatable type of Low-grade non-Hodgkin lymphoma (CTCL)…… I also developed another rare and more aggressive type off NHL….. Peripheral T-Cell Lymphoma back in late 1999.
My CTCL and PTCL are rather different from FL but most of these low-grade NHLs do tend to follow a similar- ish journey….. just with some twists.
My story is rather long and complicated See my story as I had many treatments but, yes 8.5 years out from my last treatment, turned 68 in Nov and doing great.
Hi Jamed
Given the benefits if hydration I'd just accept getting up more often. I have the same issue in that I'm tired during the day but then sleeping isn't easy and toilet breaks regular. I find it eases off later in each cycle but then comes back with the next batch of chemo.
To be honest, those are pretty minor side effects so I'm happy to just deal with them.
The exercise would be my best suggestion. I find I recover quicker if I push myself a bit and get sane decent exercise. Helps with the sleep, fogginess and general well being. But sounds like you're definitely doing the right things.
Life expectancy, no one knows this. You could be knocked over by a bus tomorrow. I try to enjoy every day I have, take joy from kids and grandkids and hope for as many good years as possible. If I c get normal life span it will be a huge blessing which I'll be very grateful for
Regards, Cormac
Hi, Mike. What an epic journey you've had. Sounds like you went through a lot. 25 years since 1999. What a milestone. There is hope for newbies like myself.
I have stage 4 follicular lymphoma, with a leukemoid presentation (high levels of lymphocytes in the blood). I think this is also rare among FL patients.
I was very hopeful to get the treatment started. But what a shock on day 4 of chemo! It has not been an easy transition.
I can't say that I'm feeling well, but nor can I say that I'm feeling unwell. I can function mostly but it's not quite the same. I went out for a long walk today and that was very energising afterwards.
I'm also looking into things like mental techniques (eg focusing on positive thoughts) meditation to try to help me get through chemo. I also discovered a cancer support centre near me so hope to get involved.
James
Dear Cormac,
You're right about life expectancy. I came to the realisation today that it's not helpful to think much about this, because it's out of everyone's control and there's no point worrying about it.
So I think it's much better to focus on the now and be fully present. Enjoy the fresh air, sunshine, exercises, baths, spending time with family and children and be fully present in the joy of everyday living.
I believe this focusing on the good thoughts will make the chemo process much more manageable.
Regards, James
Hi highlander just to let you know after a small relapse in follicular lymphoma I had 2 small radiation rounds which hopefully have sorted things for now so back to work in 3 weeks onwards and upwards hope everyone on website is doing well bless us all on this journey take care everyone carl aka clecker
Good that you are getting out….. walking and fresh air is a healer.
Goof that you have a cancer support facility near you….. I have used our local Maggie’s Center a lot over my years….its good therapy to sit and chat.
Hi Carl…… if the little, but not too often treatment blasts does the job then great….. a bit like a good classic car
Hi, Mike. There's a Maggie's Centre in Bart's Hospital in London. It sounds like a great place to join a community to discover, share and support each other. I'll be sure to go there next week.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007