Wishing everyone strength for the coming months.

[gibbleking]

teamaker and i are pretty much the same way as far as people go,we are lucky as we live in the countryside so we dont bump into many walkers...if we see them coming we try to hind in hedges or abandoned mole hills..as for hobbies aside from the usual i took up archery over the summer again and got me a nice compound bow..sadly due to the folicular non hodkins lymphoma/chemo(also not curable either ...neithers aging so i get a two for one deal of suck) i have no oomph to ride(maybe next year as they say) so i tended to lurch and shiver/throw up around the house for 6 months..i too have just had the email suggesting i stay home for a month..as i need to eat now and then i descend upon tesco to panic buy cheap tomato soup and stale crust to mix with me cold cup of tea(with no tea or hot water)..ps we havent noticed any uptick on "walkers" in burgh castle admiring the sights yet so theres some thanks for all the rain we have had...

 

[SirLurkalot]

Follicular Lymphoma here too, had it for nine years now. Doc told me I'm more likely to die with it rather than because of it. I was offered three treatment choices, Chemo (had that didn't like it) Rituximab and a course of tablets (side effect not too bad they said, still sounded nasty) or take part in a trail of a new drug which is an immuno therapy combined with Rituximab. Half way through now and so far so good no nasty side effects except feeling knackered afterwards and walking around bumping into furniture for a day after. Only downside is more trips up to the hospital than normal and I've had three biopsies and CT scans.

If successful it should knock it on the head, no guarantees it will kill the little git but it may supress it so it doesn't keep coming back.

Good luck with your treatment

 

[Pipmeister]

Re:

Well I guess we are like the three somethings…. Musketeers, Amigos.

Anyway, just plain old Stage 4 Bowel Cancer here – Metastasized to Liver and Abdomen. I was also offered one of the “Mabs” to be included in my last course of FOLFIRI Chemo from Jan to July this year. Cetuximab was the gear in my case. The section of my Bowel that was removed in November 2017 and kept on ice needed to be tested for KRAS to see if anti-eGFR therapy would be effective, which it was, so I went for it.

I was told about the side effects, which sounded grim at best, but that it would give me a few more weeks’ survival - hurrah. Sadly the side effects for me were horrendous. Influenza type symptoms with a constant cough – and I mean constant. A skin rash – more like a mutation, that made me look like I had Leprosy. My Stoma Reversal popped out like a Hiatus Hernia with all the coughing, but the sensation of the Flu like symptoms was too much to cope with for 6 months, so it was pulled from my Chemo Protocol.

Any road up, currently my C.E.A. is rising (as expected I guess), but I do feel pretty good at the moment, so overall nothing to complain really. I can walk a distance, ride a bicycle and a motorbike, do the garden…. all that sort of stuff. I went for a Jolly on Friday up to the Ridgeway at West Ilsley on the Kawasaki. I was just eating my sandwich admiring the view, when the Police turned up. The stopped to ask walkers what was the purpose of their trip. Luckily they didn’t approach me, which is probably just as well. The full story from me of why some days I’m just not bothered about lockdown may not have been the best response.

Pip

 

[gibbleking]

Follicular Lymphoma here too, had it for nine years now. Doc told me I'm more likely to die with it rather than because of it. I was offered three treatment choices, Chemo (had that didn't like it) Rituximab and a course of tablets (side effect not too bad they said, still sounded nasty) or take part in a trail of a new drug which is an immuno therapy combined with Rituximab. Half way through now and so far so good no nasty side effects except feeling knackered afterwards and walking around bumping into furniture for a day after. Only downside is more trips up to the hospital than normal and I've had three biopsies and CT scans.

If successful it should knock it on the head, no guarantees it will kill the little git but it may supress it so it doesn't keep coming back.

Good luck with your treatment

i reacted quite badly to the rituximab...my first session of bendamustine/ritux started off ok but after an hour or so my heart rate shot up,i had violent chest pains,palpatations with irregular heart beating..i had this lovely red head stare at me like i was breakfast all day..the first session lasted 8 hours to get the flow rates sorted..but by the end of the day my doc was so concerned that the ritux was sidelined..any hoos now at the end of the course of six months my pet ct was done..i then got the phone call to tell me he didnt think the chemo worked well enough as i had tumours on my spine and kidney still(he thinks)..im waiting on the last scan update now which will be december 7th to either confirm or deny the signs of more...it started btw with a small peas sized lump under my chin which grew real quick in under a month to a walnut size...i named it doug(as you do) and when it was removed i called it doug less...go figure....my largest tumour was 6 to 7cm and wrapped around my kidneys which explains the back aches i had for aa long time..worst session was number 5 off 6 ...i still have no ooompf..im tired all the damn time and just walking round the field with the doggies wears me out...my breathing sucks too but at least the orrid sweat sessions have calmed down ...my indigestion is spotty at working and ive grown to hate the laxido powder with a new found passion soley reserved for huffys and people who live in denial playing golf..if ou read a post i made some months ago it details how mine kicked off..its a bit of an epic but fun to read...any way...DEATH TO FNHL AND ALL IT STANDS FOR!!!!!...edit..im on the fnhl group on face book..if you ever want to join a group this bunch are great.....

 

[gibbleking]

Re: Re:

Well I guess we are like the three somethings…. Musketeers, Amigos.

Anyway, just plain old Stage 4 Bowel Cancer here – Metastasized to Liver and Abdomen. I was also offered one of the “Mabs” to be included in my last course of FOLFIRI Chemo from Jan to July this year. Cetuximab was the gear in my case. The section of my Bowel that was removed in November 2017 and kept on ice needed to be tested for KRAS to see if anti-eGFR therapy would be effective, which it was, so I went for it.

I was told about the side effects, which sounded grim at best, but that it would give me a few more weeks’ survival - hurrah. Sadly the side effects for me were horrendous. Influenza type symptoms with a constant cough – and I mean constant. A skin rash – more like a mutation, that made me look like I had Leprosy. My Stoma Reversal popped out like a Hiatus Hernia with all the coughing, but the sensation of the Flu like symptoms was too much to cope with for 6 months, so it was pulled from my Chemo Protocol.

Any road up, currently my C.E.A. is rising (as expected I guess), but I do feel pretty good at the moment, so overall nothing to complain really. I can walk a distance, ride a bicycle and a motorbike, do the garden…. all that sort of stuff. I went for a Jolly on Friday up to the Ridgeway at West Ilsley on the Kawasaki. I was just eating my sandwich admiring the view, when the Police turned up. The stopped to ask walkers what was the purpose of their trip. Luckily they didn’t approach me, which is probably just as well. The full story from me of why some days I’m just not bothered about lockdown may not have been the best response.

Pip

during my chemo i couldnt even sit in the sun as it burned me quickly,i spent my days shivering,sleeping,trying to eat,trying not to throw up...the last of which i did quite well at by drinking a lot of ginger beer...the anti sickness tabs wrecked havoc on my tummy so much so i stopped taking them...so far in 6 months ive spent nearly a month in hospital for suspected covid(iso ward by myself for 9 days),sepsis,fevers,infections de to the canular needles..reacting badly to the meds they gave me for the cancer.reactions to anti histamenes...i get asked how the covid has affected me...i sort of smile and think...what covid to be fair...i came real close to being dead last december so this really doesnt worry me ...(my tumours were impairing the functionality of my kidneys so much)...the chemo fuzzy brain does irritate me tho...stay strong brother and ride on! edit...forgot to mention the damned rash issue ive had since month 3...watched that mother spread all over and itch like a madmen for months...i still get it round the head and chest now but no where near as bad as before...

 

[legrandefromage]

You lot are just stealing our thunder with yer fancy pants medication and diseases! <hides hand with minor graze behind back>

I cant even say all the best to any of you as its just an empty phrase, maybe better to offer hope whatever happens that its all as pain free as possible.

A few days of furlough coming up so its back to the sanding and decorating

*if theres anything any of you need, please, dont hesitate to ask!*

 

[gibbleking]

You lot are just stealing our thunder with yer fancy pants medication and diseases! <hides hand with minor graze behind back>

I cant even say all the best to any of you as its just an empty phrase, maybe better to offer hope whatever happens that its all as pain free as possible.

A few days of furlough coming up so its back to the sanding and decorating

*if theres anything any of you need, please, dont hesitate to ask!*

my biggest issue is trying to stop her indoors from getting more frikkin puppies......the two we already have are taking over the bed with paws and licks already..

 

[legrandefromage]

death by puppies!

 

[Pipmeister]

You lot are just stealing our thunder with yer fancy pants medication and diseases! <hides hand with minor graze behind back>

I cant even say all the best to any of you as its just an empty phrase, maybe better to offer hope whatever happens that its all as pain free as possible.

A few days of furlough coming up so its back to the sanding and decorating

*if theres anything any of you need, please, dont hesitate to ask!*

Cheers LGF - I did think that the three of us had somewhat steered the thread away from MTS's original intention. That's why I mentioned my close encounter with the COVID Police on Friday :roll: .

Mind you LGF, you have had your own dealings with a near fatal situation :shock: .

Anyway, let's just try to support each other on here.

Pip

 

[legrandefromage]

Cheers LGF - I did think that the three of us had somewhat steered the thread away from MTS's original intention. That's why I mentioned my close encounter with the COVID Police on Friday :roll: .

Mind you LGF, you have had your own dealings with a near fatal situation :shock: .

Anyway, let's just try to support each other on here.

Pip

:mrgreen:

All I can report on that is that I remember the clunk as my head hit the hotel room door frame, the (rather disappointingly) oblivion inbetween and then coming round in the medics' chair as they brought me down a rickety fire escape - the fact that I had puked and shit myself at the point of death not unnoticed - my first words being something like 'by Thor's trousers! I've fuckin shit meself!' - not realizing that the medics could have been carrying a corpse down the stairs

Took about 3 months to get over the physical effects but at least I was cycling after about 4 weeks if a little slowly. Mentally a lot longer! I would burst into tears at any given moment, still to this day totally floored by the kindnesses of strangers.

And NEVER going back to that brothel again... (it was a wedding reecpetion, brothel sounds more adventurous)