Hello again

Chat about anything you like... Fed up with the state of the world today? Tell us!
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Bob1955
Posts: 320
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Hello again

Post by Bob1955 » Mon Jun 29, 2020 5:59 pm

Hi everyone, just popped in to give a brief update to those who remember me, I got refused the whipple as they said I would not survive 30 days, this is because I also have cystic fibrosis. I had a recent scan and the tumors have not changed much at all, but still a 80% chance of being cancerous. The good news is that I now qualify for the new CF drug Kalydeco, I started it last Wednesday and I can feel the difference already, truly amazing, my lung function has increased by 14% already.
Hope everyone is keeping well and safe in these strange times, I am still shielded and bored stupid, as we all are.

paul...m
Posts: 102
Joined: Thu Jan 30, 2020 6:53 am

Re: Hello again

Post by paul...m » Tue Jun 30, 2020 6:32 am

Good to hear from you again Bob
Pleased that they have found a drug that is helping you .How is everything else going .

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maz
Posts: 7603
Joined: Fri Jan 01, 2010 11:29 am
Location: Harrogate, UK.

Re: Hello again

Post by maz » Tue Jun 30, 2020 9:07 am

Great to hear from you Bob, and about your being able to have the new CF drug. I have heard great things of these new drugs from some CF sufferers the USA so I hope you continue to benefit.
Marilyn

Bob1955
Posts: 320
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Re: Hello again

Post by Bob1955 » Tue Jun 30, 2020 5:21 pm

Thanks, on the panc situation there is no change, I still have two pre cancerous tumors that have a 80% chance of turning cancerous, I have no pain and I am only on CF drugs ( a lot ). The CF was the cause of my panc problems, I didn't know that until about two years ago, the older you get with CF the more it affects other organs, I have not had a drink since I developed the panc problems...but that was just to try and help it recover, now I just can't be bothered drinking anyway.
Hope you are all well and managing ok in these crazy times, I still don't know anyone who had the virus or who died from it...do you ??, I have been shielded since the outbreak started in March, it is getting to me a bit now tbh, I am allowed out for a walk locally but must social distance.
I have not done so yet coz I cannot be bothered walking round the block...although I should really.
Anyway, stay safe and well and look forward to the end of this virus situation.

paul...m
Posts: 102
Joined: Thu Jan 30, 2020 6:53 am

Re: Hello again

Post by paul...m » Wed Jul 01, 2020 6:08 am

Don't know of anyone personally who has had it but was working at one property when owner told me house next door and house behind have both had it .Suddenly I felt I didn't want to be there .Also have a customer who is a manager of a care home and seeing as all care homes in area have had it I am giving her a miss for as long as possible .

Bob1955
Posts: 320
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Re: Hello again

Post by Bob1955 » Thu Jul 02, 2020 10:38 pm

It is the strangest pandemic I have heard of, normally children would be very prone to infection, but this one seems to be rare In children.
Onto another piece of good news... The NHS England has came to a agreement with Vertex Pharmaceuticals to supply Kaftrio, the latest Cystic Fibrosis drug. This is really big news for all connected with CF, this drug will treat 90% of patients, the one I am on is only suitable for like 20% of patients right now, the only reason I got on it is they opened it up to another couple of genetic mutations, one of which was R117H of which I have, probably more will be added as the work continues, tho with this new one it may make the other two drugs obsolete as the new one is a triple combo of Orkambi, ivacaftor and the new one which I forget the name of :(.
It would be fantastic if more could be done for the panc, it is so difficult to treat, and the op is very very invasive and major surgery. As we all know, a lot of the time the damage is done before symptoms arise, the medical world has came so far tho...there is always something round the corner.

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Janey Dal
Posts: 9844
Joined: Mon Jul 26, 2010 10:34 am
Location: Stockton on Tees, NE UK.

Re: Hello again

Post by Janey Dal » Sat Jul 04, 2020 12:24 pm

Hi Bob

Great to see you again and I’m delighted with your good news on the CF drug. That will help so many people!

I can’t imagine how you have managed shielding to be honest. I would have gone stir crazy by now! Only another month to go and you can cautiously go out and about a bit. Let’s hope we get the return of the better weather for then!

Hugs and take care

Regards

Jane xx

Bob1955
Posts: 320
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Re: Hello again

Post by Bob1955 » Sun Jul 05, 2020 1:19 am

It has been boringly difficult, but just getting your head into a thought where you know it will pass gets you there, there are no choices really...lol
The forum seems quieter now. Did Tam from Edinburgh I think...ever return after his OP, I fear the worst for him.

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