A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Mon Jul 22, 2013 10:08 am

J_T wrote :
> Great to hear treatment is imminent, very best of luck Mike x

Thanks JT - can't say I'm really looking forward to it but in a way will be glad to get it underway and assess the impact!

Best wishes

Mike

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Sat Jul 27, 2013 11:25 am

Hi All

Finally confirmed that the results of all the scans, tests and screening, are within the required parameters so all systems go to start on the Clinical Trial on Wednesday. During the CT scan a blood clot on my lung was revealed so I am now having to inject myself with Tinzaparin blood thinner each day. No problem and luckily I am not at all squeamish and it is far more convenient doing it myseelf than having to wait for a nurse to do so.

Many thanks to the dedicated health professionals who are looking after me so magnificently I cannot really find the right words to express how grateful I am to have such a fantastic team.

Love and Peace

Mike

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Welcome to this new sub forum

Postby KATB » Sat Jul 27, 2013 11:52 am

Good luck with it Mike. I think you're really lucky to be able to go onto a trial. I hope the MEK inhibitor makes a positive difference when added to the gem!

Onwards and upwards!

K
x

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Welcome to this new sub forum

Postby karen17 » Sat Jul 27, 2013 12:12 pm

Brilliant news Mike. Wishing you all the best xx

Bee
Posts: 219
Joined: Fri May 03, 2013 8:39 pm

Re: Welcome to this new sub forum

Postby Bee » Sat Jul 27, 2013 10:06 pm

Good luck, let battle commence!
bee x

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Wed Jul 31, 2013 11:45 am

Hi All

At hospital for first day of the trial. I've been given both the chemo and the trial tablets (though these may just be smarties). Not sure how long it takes for any nasties to come out of the woodwork but feeling fine. Diligent team doing observations regularly and I've just polished off a few ginger nuts and cups of tea.

Here till early evening today so they can monitor me and back tomorrow for more bloods ECG and observations.

Nothing but praise for my nameless specialist team here. I count my blessings every day and thanks to the District Nurse now even have a chemist who'll deliver my medicines for me. As a bonus there is WiFi on this ward so I have email and internet while lying here. Such is my renewed optimism that I've just renewed my season ticket for Chester FC. At worst it's a legacy for the club but hopefully I may see them win their 4th successive promotion since reforming in 2010!!

Love and Peace

Mike

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Welcome to this new sub forum

Postby LindaH » Wed Jul 31, 2013 1:57 pm

Good luck with everything Mike, will be following your progress with interest and keeping fingers crossed for you.

Erm....Chester....won't it be lonely stood on your own? :-)

Linda

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Welcome to this new sub forum

Postby Cathy » Wed Jul 31, 2013 4:40 pm

Linda!!

LOL!!!!!

Mike, great news and best of luck with the next few days and your football team. :)
Last edited by Cathy on Wed Jul 31, 2013 4:41 pm, edited 1 time in total.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Welcome to this new sub forum

Postby J_T » Wed Jul 31, 2013 4:41 pm

Yes, what Linda said! lol at standing on your own.

Seems to be going well so far. Good luck.

L & P

Julia

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Wed Jul 31, 2013 8:17 pm

Hi All

Very drole Linda and really made me laugh! Fact is we have attendances in the top half dozen or so in Non-League football. Still a part-time set up but as an ex-league club that is entirely owned by its fans run very professionally.Can't wait for the season to start and just hope I get value for my money from my season ticket.

Early night after a long day and back at hospital at 9.00 tomorrow morning for tests.

Love and Peace (I think on here I'll even have to extend this to fans of our deadly rivals Wrexham!)

Mine

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Welcome to this new sub forum

Postby LindaH » Thu Aug 01, 2013 7:41 am

cestrian wrote :
> Hi All
>
> Very drole Linda and really made me laugh! Fact is we have attendances in
> the top half dozen or so in Non-League football. Still a part-time set up
> but as an ex-league club that is entirely owned by its fans run very
> professionally.Can't wait for the season to start and just hope I get value
> for my money from my season ticket.
>
> Early night after a long day and back at hospital at 9.00 tomorrow morning
> for tests.
>
> Love and Peace (I think on here I'll even have to extend this to fans of
> our deadly rivals Wrexham!)
>
> Mine


Now you really will laugh Mike.....we support Blackpool FC.....tee hee. Can't add to that really...can I ? Good Luck Mike

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Sat Sep 28, 2013 9:00 am

Hi All

Recently completed first cycle of clinical trial and very encouraged to hear my tumour has stabilised. Whilst I'd rather hoped that it may have shrunk my excellent consultant tells me that only 10% of those treated would see that happen. Also it's only because I'm on the trial that I've had another scan at such an early stage.

I'm not really into the science and my team say the best indicator is how I feel and look and mercifully I've been feeling much better, getting out more and being more active as well as eating better. No side effects from Henderson's or the Mek inhibitor trial drug I'm taking alongside it (though as it's a blind trial I could be on the placebo).

Counting my blessings every day and thank God for the love and support from family and friends who are truly amazing. Since diagnosis in late May my son and his fiancee have travelled up from London virtually every weekend but I've finally persuaded him to have the odd weekend off as it seems that I'm not about to snuff it just yet. Alas he doesn't share my and my darling daughter's sense of humour and found this a tad upsetting though he is having a weekend at home this week!

I do feel guilty when I read some of the experiences of others suffering this could scourge and just pray they will receive better care and feel better as treatment takes effect.

Love and Peace

Mike

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Sat Sep 28, 2013 9:03 am

For "Hendersons" read Gemcetabine and for "could" read "foul" - ruddy predictive text!!

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Welcome to this new sub forum

Postby Cathy » Sat Sep 28, 2013 9:27 am

Lol Mike!

Stabilising is very positive indeed and the fact that you are also feeling well is a very good sign.

Also, bear in mind that just because there wasn't a shrinkage this time, doesn't mean that that might not happen in future.

Keep on keeping on

Cathy xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Welcome to this new sub forum

Postby Slewis7313 » Sat Sep 28, 2013 9:46 am

Hi Mike, I'd also like to blame predictive text for my mistakes here, but it is in reality a problem somewhere between by brain and fingers.
I went through four cycles of GemCap and was initially disappointed to be told the tumour had not shrunk, but on reflection I felt much better and the tumour had stabilised which everyone assured me was a really good result.... Something I now appreciate after the many discussions here on the subject. I have since had chemo radiotherapy which has shrunk the thing, though the CT scan was only 7 weeks after completing my treatment. It remains inoperable and I have another scan sometime in October where it may have shrunk further..... we shall see. I too have a Daughter who lives over an hour away and wants to be at every Hospital visit, though as you say if things are OK at the moment there is not really a need. They do worry about us don't they, but it is obviously a measure of how much we are loved.

It has indeed been a truly awful few weeks for some of our friends on this forum....... This thing is relentless

Take care

Steve