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Well done on your daily drinking BedrockFred, one of the hardest, but most important things we all can do to keep the body systems working well.
Once you are looking in the wing mirror to look back at this part of life you will appreciate even more not having to go to the toilet at silly-o’clock.
During my Stem Cell Transplants I was retaining water so I was given stuff to make me go and it was always during the night....... next morning with no sleep my record of pee pots lined up on the floor was 11
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Peter, not drank any alcohol since my diagnosis and not missing it at all
I was told by my haematologist it would be best to leave alcohol alone
I drink lots of water, caffeine free tea and coffee, sugar free squashes, caffeine free diet Pepsi, horlicks so plenty of variety
Got a couple of drinking bottles one is always by my side
Together we are stronger
Well into Chemo week as we now call it at home, hospital visit pre chemo appointment on Wednesday them cycle 5 on Friday
Feeling good right now and dog walks have got longer up to three and a half miles, no doubt after Friday they will come down again, as fatigue seems to affect me a lot, I still feel tired later in the evening and bedtime is always before 9pm but do rise early around 6am although never been a "lay in" person
Seems a long while since my treatment started but then I think cycle 5 already and then hopefully only 1 to go
Still drinking plenty ( no alcohol or caffeine) at least 3ltrs a day and am certain that it really helps along with the walks and exercise.
Hope everyone else is getting along well thinking of you all every day, many many thanks for your support too, really does help so much
Those in front of me on their treatment what happens after cycle 6, all I know is that I will have a scan about a month later then if all is ok I will be put on a 2 year maintenance programme, what does that 2 year plan consist of?
Glad you are feeling good still and managing decent walks each day, my mileage is increasing now and today we are off out for a few hours walking (a couple of breaks thrown in). My plain water drinking has dropped a bit but having a lot more tea as I find it eqsier to deal with at the moment (think it could be just boredom of plain water) I mentioned it to my specialist nurse and she said it doesn't matter as long as we get a decent amount of fluid into us. So for me its Earl Grey, peppermint, green tea, and ginger.
I haven't a date yet for my 1st maintenance but have been told I will hear this week and will also be having a meeting with my team about what to expect.
Good luck Friday
In the end, it's not the years in your life that count. It's the life in your years. Abraham Lincoln
Good luck Peter please keep us informed on your maintenance programme, I have no idea what it entails all they say to me we will discus nearer the time
Good luck to everybody and thanks for the support means a lot, hope everyone is getting through their treatment as best that can be expected
Special mention to Mike (Highlander) with what he's having to deal with not sure I could handle all his problems and keep positive, good luck
Hi Fred the 2 year maintenance is normally a subcutaneous injection of rituximab, but if you are on something different like some of the others, then it will be that. You get the injection once every 2 months though some are on 3 monthly cycles but research has shown it makes little difference (2 or 3 months option). It means treatment takes minutes rather than hours.
hope this helps and here is a link to info for nurses about the injection
I will Fred, all I know so far is that the 2 monthly immunotherapy cycles last 2-3 hours. Which is a lot better than every 3 weeks for about 4-5 hours lol.
Hello John, wish mine was a subcutaneous injection, sadly its not, it lasts 2-3 hours every 2 months for 2 years. But will know more when I see the doctors.
Just back from hospital been a long day but 5th cycle done and dusted, now sit back and wait for side effects to kick in lol
Only 1 left with any luck
Great care as usual from all at PCH special mention to my nurse Eve who goes the extra mile
Thank God for the NHS
Don't know about you but I gave my nurse a hug after it was all over, I think she was a bit surprised but she knew how much she meant to me in support.
I hope you don't have any lazy moments like I did
Nice work Fred, 5 down 1 to go. Nearly there buddy.
Well done Fred. I more to go ..........
I am now slightly behind you as I don’t have my 5th cycle until the beginning of April. My treatment still seems to be more in line with Pauls.
Paul you must be having your scan soon or did you have it last week? I also know that you are going to be celebrating a ‘big’ birthday so I hope that you have a fab party and celebrate in style.
I am keeping my fingers crossed that your results will be what you are looking for and you can now start moving forwards towards the next stage of treatment.
Life here in Vidnna is good. The sun is shinning and the birds are singing. Last week and this coming week are my ‘good’ weeks so I am making the most of things. School is crazy. The teacher I work with has been in and out for the last couple of months so my workload has increased while having treatment and not decreased!!! However bedtime is now 8.30pm - lol. I am looking forwards to less nausea ( which has been my biggest problem since cycle 3 ) and more energy ........ Sometimes I forget what ‘normal’ actually is these days.
Hope that you all have a great weekend.
yes, scan was last week and just about to leave to go and see the consultant in oxford at 2pm to get the results!
had an amazing party on Saturday thanks, but drank far too many tequilas and sambucas at the end of it.
PET scan results showed a complete response (Deauville score 2), which basically means I’m in remission.
im so happy right now and I hope this gives hope to all of you going through the same treatment currently.
ive loved the support I’ve had from forum members over the last 6 months too! Thanks.
that's good Paul, pleased for you, are you now doing 2 years maintenance ? did they show you the before and after scan, its good to see to gone and can have a positive impact on mental attitude moving forward. sounds like another celebration is on the cards now
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