How common is aggressive Follicular lymphoma?

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Beginning of June 2020 I was a healthy young man of 64 cycling and long-distance walking ... and three weeks later I was breathless after 50 steps ... and on my way to hospital under blue lights. With fluid on the lungs (pleural effusion), as it turned out. After a host of tests and scans, a biopsy confirmed follicular NH lymphoma: level 4 and aggressive. Within a week I began R-CHOP and am now coming up to my 4th cycle. There have been other complications for good measure, including shingles activation and blood clots.

To me, the decline has seemed astonishingly quick. The nice thing is that my lungs are now slowly, slowly clearing out of fluid, so breathing is getting much easier and I can walk for about an hour before pooping out.

The strange thing, from my perspective, is that I haven't experienced any of the common symptoms of follicular lymphoma: no night sweats, no high temperatures or sudden weight loss, no easy bruising or bleeding, and so on. And its onset has seemed so fast.

Anyone else out there with a similar experience of this? 

  • Thanks Londoner12. That seems exactly my situation. When I specifically asked whether I had DLBCL (while trying to drill down into online information), the consultant was obliged to say it was follicular -- because that's what the biopsy showed. Because of the seriousness of it (I was in hospital dealing with pleural effusion, shingles and blood clots on my lungs), luckily I went straight onto R-CHOP within 10 days. 

    I wish you the best of luck with its eradication.

    How do you feel about the watch and wait? 

  • I was pretty much the same as you as I had a collapsed lung and breathing got raspy quite quickly although I had felt off for sometime and had lost weight. Watch and wait is somewhat bothersome really, not eased by having so much time indoors due to this covid thing. Usually when my life is normal I don't have so much time to dwell on it. They say the first two years after chemo is important and I'm about six months short of that so hopeful of a long remission.

  • FormerMember
    FormerMember in reply to Lolie

    I also had no symptoms. I've never had symptoms. At stage 4. It's so crazy. 

  • It sure is crazy. I guess the whole notion of cells in your body suddenly going off-piste and replicating into mass strange forms is a bit mad too. I suppose this is at the heart of why cancer is so scary -- the weird and sudden randomness of it all. 

  • Well I spoke too soon. Seems it might be back already. Neutrophils have taken a dip. Redo bloods next week, then PET scan and bone marrow biopsy. Sigh!

  • Let’s hope not but as you know this was always a possibility but there are many tools in the box Fingers crossed

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Well, see how it goes, and keep us posted.

    Had my second CT Scan results back today -- just before my 5th chemo cycle begins. The consultant was fairly limited in his diagnosis: 'Reduction in more than 50% of the lymphoma cells. That's what we aim for. We're on track. Carry on with cycles 5 and 6.' Being quite reserved he'd say no more.

    I suppose I'd rather hear, 'Wow, 93% gone!'. But I guess we're going in the right direction with this R-CHOP routine. 

  • Good to hear from you, yes, an over 50% reduction is fantastic and it is going in the correct direction. The effects of treatment on your growth areas will accumulative and as your growth is more 50% reduced the rest will reduce quicker.

    You are doing great Thumbsup 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you Mike for that cheery note. It's sometimes difficult to gauge things.

    Most of my consultants at Reading are very positive and concise ... but there's one or two who are a bit understated and poker-faced. 

  • FormerMember
    FormerMember

    I have/had aggressive NHL started treatment back in 2018 had 8 sessions of R-CHOP had a PET Scan June 2019 which showed I was in remission I am now on RTUX maintenance treatment  Yes it was all very sudden 

    Like you I had fluid on the lungs, shingles, very sore mouth etc  but that has  all cleared now

    I was also fatigued and found that very frustrating being an active person, but now on maintenance treatment I am back to near normal just a day or so after treatment I am a little exhausted 

    No weight loss in fact the opposite, no night sweats no high temps or bruising and bleeding

    I had a scan a couple of weeks ago I should get the results today hopefully it will still show I am still in remission 

    I put my faith in my NHS health team who are fantastic and really helpful explaining any concerns I have

    Good luck and stay safe