Waking in a hurricane

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I went to the Doctor with a cold and wheezing that would not go away.  Two months later I've had my lungs aspirated eight times and have had chemo and immunotherapy over two days this week.  I'm sleepy but have few other symptoms - however being a bloke I'm not really in touch with the more 'subtle' effects.  I've appointments for two more two day sessions and have been told that I can look forward to eight rounds in all.  On the consent form the 'cure' line was struck through and the remission line was underlined.  I'll take that rather than the alternative, 

  • Hi  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 I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable ‘other’ type of 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.

    Yes Low Grade Lymphomas are at the moment seen as incurable….. but very treatable when required.

    Over my first 15+ years the longest partial remission I had was about 9 months before I had to go onto more treatment but my type of Lymphoma is very rare…..  but I am now over 8 years out from my last treatment and discharged. I turned 68 last Nov and I am getting on with life.

    Always around to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hey Mr Blott

    Sorry you've joined the crew here but glad of the fellow traveller. I was diagnosed with FL about 7 months ago. It was already advanced (stage 4) and the only symptoms I had was a lump in my groin that I put down to a pulled muscle. I went for an ultrasound with another issue and they saw my enlarged spleen and several other nodes around the abdomen. After a bone marrow biopsy (yuck) and then a node biopsy (easy) FL was confirmed. My platelette count is low which triggered my move to active treatment. Just completed cycle 1 of chemo and immunotherapy with a target of 6 cycles. Have to say, it wasn't as bad as I'd been expecting. Still able to do most things but do feel tired and foggy pretty often. I'm aware I'm immunocompromised so have to risk manane my life a bit. But that doesn't stop me walking the dog on the beach and generally enjoying the outdoors.

    All in all, this hasn't been the catastrophic experience that you'd expect of a stage 4 cancer. I get a lot of comfort from this group and reading some of the positive messages. As Mike (Highlander) said, plan for the best, deal with the rest.

    Always around if you need an ear to bend.


  • Still feeling sh1t and off my food the Saturday after my tuesday/wednesday treatment .  I am flaked out in the armchair with a fluffy blanket.  Don't know if that is to be expected.

  • Hi Mr. Blott, yes, this time round I have been the same. I was diagnosed 3 years ago with Folliculat Lymphoma and sailed through the treatment. We'd hoped that the remission would have lasted longer, so now I am being prepared for a bone marrow stem cell trandplant so it may have something to do with the type of chemo you are on. The first 2 rounds I reacted badly. Now they give me the anti-sick intravenously which has made all of the difference. I have also make two juices using a hand blender in the morning which really help. - Kale with a sprinkle of ginger, cinnamon, cacoa flaxseeds, chia seeds, 4 slIces of banana to sweeten and ususally eat a handful of blueberris. This next one has been a life saver as I couldn't drink water to keep hydrated. Natural recipe to keep your electrolyes balanced. 1/2 Fresh lemon and lime, ginger slices which you can get in a jar called very lazy ginger,  spoonful of good honey and sprinkle of hymalayan salt. My current chemo is  Bendamustine & Rituximab. I hope this helps and you start to feel better soon, keep the fluid up and movement as much as you can. All the best. (Helen)