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Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Recently diagnosed!

Postby Sueba » Tue Oct 30, 2012 12:41 am

Hi Debs
He goes in a week on Thursday to have a central line fitted then the chemo starts the following day
Without going downstairs to have a look I can't tell you the drugs only that there are 3 of them and is an aggressive treatment.I'm sure once he starts those 3 drugs will be engrained on my brain! Ive come on the forum at this time of night (12:30am) because I can't sleep, my husband Is complaining of right sided pain and can't get comfy.He's taken paracetemol and has gone downstairs with a blanket to have a change of scene,again I'm worrying and wondering whether to contact our gp for painkillers.but he says it's only at night time and not to worry,which I do!!my husband is himself a GP and am sure doesn't always tell me everything!
So I'm going to try and get to sleep now so I have energy for tomorrow,we are hoping to go as a family to watch the new Bond film:-) My youngest son (12 years old) said that maybe this might be one of our last family days out for a while with dad starting chemo,it broke my heart!!

Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Recently diagnosed!

Postby Jool2504 » Tue Oct 30, 2012 12:13 pm

Hi Sue,

Bill has had a massive decrease in pain since he started Gabapentine, hes pain free most of the time now, he is also on Zomorph, Paracetamol & Ibuprofen.

If I am worried about anything I go over Bills head, much to his annoyance but he is always much happier once he has been sorted out.

Hope you got some sleep.

Regards

Jools

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: Recently diagnosed!

Postby louiepc » Tue Oct 30, 2012 2:28 pm

Hi Sue,

Firstly, I wanted to say how sorry I am to hear of your husband's diagnosis. PC is so unfair, at such a young age, you must be in complete shock.

My mum had PC last year, in the same place as your husband, but she had it in two lymph nodes too. She had 4 sessions of chemo, for her it was quite tough, she tired very easily, and on the first session was quite sick.

I would definately speak to hte oncologist or consultant re medication in pain relief and/or anti sickness drugs. I expect your husband knows what's going on being a GP, sometimes too much knowledge is frightening.

As with timescales, I know it's easier said that done, but you can't look at it like that. Every person is different, your husband has age and fitness on his side, with chemo it will hopefully shrink the tumour, and give him some quality of life. Life is going to be completely different now, you will be ruled by hospital visits, chemo and medication, what was "normal" goes out of the window and a different "normal" arrives. Take each day as it comes, don't expect too much, but when you have a good day, enjoy it and make it count. Great idea, going to a film and having a photo shoot. You will find doing simple family things like that are real memory makers, hold onto these memories for when times are rough, you have some special times of the year coming up, maybe do something that you've planned to do, but never got round to.

Take care, keep in touch.

love louie xxx

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Recently diagnosed!

Postby yorkypaul » Tue Oct 30, 2012 3:12 pm

Hi Sue. I am very sorry to read of your situation. Have you looked online at the"nanoknife" or "irreversible electroporation" procedure available at the hospital in London? Unfortunately, it is only available privately. If you Google it, you can read more about it.
My thoughts are with you. Hugs,
Paul

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Recently diagnosed!

Postby Sueba » Tue Oct 30, 2012 6:20 pm

Thanks Paul
It is something we've looked at in fact my husband has just emailed them!does anyone know of anyone who's had it or knows anything about it?
Thankyou for your kind wishes and thought!
Sue
X

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Recently diagnosed!

Postby DRAD3 » Tue Oct 30, 2012 7:48 pm

Hi Sue - you mention it is a combinatin of 3 chemos. Gary had the same and I wonder whether it is the following combo = Oxaliplatin/5FU/Irinotecan? You are right, it is an aggressive treatment and they will be offering this because he is young and they must be optimistic he will tolerate it OK. Gary found it tough but that was because he had already had six months of another type of chemo combination and radiotherapy and the cumulative effect was probably taking its toll. The main thing, as I've said before will be the fatigue but you will also be made aware of the lowering of the immune system and the resultant risk of infection but you will be given phone numbers to keep handy and you will need to contact the hospital if he feels unwell and/or has a temperature. I seem to recall diarrhoea being a possible side effect although Gary did not experience this - you will also be given antibiotics as a precaution if this becomes severe. You will also be given anti-sickness meds and he will probably be given steroids to take for the couple of days following treatment which Gary said was very effective and really helped. All in all, Sue, they really do do everything in their power to make it as painless as possible and monitor very, very closely so remain positive. I remember Gary finding evening and night-time the most difficult time to get comfortable and I think that is common among PC sufferers but hopefully if you can let the medical team know, they can review his pain medication - he needs to say though! I remember Gary admitting reluctantly that his pain had increased and said "but I can put up with that" and the doctor leant forward and said firmly but very gently "you do not have to put up with that and I won't let you". Gary was quite emotional - to be given permission to say he was in pain.
Love to you all.
Deb
x

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Recently diagnosed!

Postby DRAD3 » Tue Oct 30, 2012 7:49 pm

P.S. Good luck with researching the other treatments - you are one of the first to look into it so do let us know how you get on. xxx

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Recently diagnosed!

Postby yorkypaul » Tue Oct 30, 2012 10:11 pm

We are liaising with the hospital with regard to nanoknife procedure. Sadly, the NHS hospital are being totally incompetent as far as sending a dvd of my wife's most recent scan is concerned! We just wasted almost another week! No idea if the treatment will be offered. Wonder if we are clutching at straws. Got to try everything.Have not said anything about it, because I don't know if there is anything to offer. Will keep you posted.
Hugs,
Paul

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Recently diagnosed!

Postby Sueba » Tue Oct 30, 2012 10:40 pm

Hi Paul
Yes please keep us informed as we will you.Mick has emailed them and left a message on their answerphone and intends to ring in the morning.like you we don't know if we are clutching at straws but what else can we do!stay strong I have read some of your previous posts and my heart goes out to you,you have both been through so much already!we have had a normal day today,my sons are on half term so we went to watch James bond film!!
Sending big hugs!
Sue
X

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Recently diagnosed!

Postby Sueba » Tue Oct 30, 2012 10:44 pm

Hi debs
Thanks for the post,yes he's going to be on oxaliplatin,irinotecan,and fluoroouracil!! Your post has really helped,you sound to be a very strong person!
Big hugs
Sue
X

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Recently diagnosed!

Postby Sueba » Wed Oct 31, 2012 6:41 pm

Hi again Paul,
If you're still struggling with your hospital sending the DVD why not give the ...(edited-moderator) a ring and ask if they can download the scans from the radiologist data, mick has emailed the dr there his date of birth,gp,address of gp surgery and he is going to try and download it.weve not heard back from him yet so may still have to get the hospital to post it.Like you we don't know if mick will be suitable as the original surgeon said he didn't think it would ever be operable but we are prepared to try this avenue too!
Hope your days been ok,we've been to the hospital for a blood test (1 hour drive each way!)and are going back tomorrow for 7am for a biopsy as last weeks "sweepings"we're inconclusive.I am working on staying positive at the moment as it keeps me going!
Love
Sue x

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Recently diagnosed!

Postby susikus » Thu Nov 01, 2012 7:47 am

Hallo Sue, another Sue here. I will be very interested to hear how you get on with your nanoknife enquiries. We had started investigating but it was too late. One thing I did learn, that I now feel must be more widely known, is that nanoknife is incompatible with metal stents. And metal stents are the standard in this country as they work well with chemotherapy. And they are so much the norm that you are not even consulted. My husband had two stents, one in the duodenum that was inserted not long after diagnosis and another in his common bile duct. We had an appointment and wanted to ask about replacement with a view to nanoknife when he became very ill and died in the space of about 36 hours. So please be aware before any possibility of stenting being needed. I wish you both all the love and luck in the world.
Sue
xxx

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Recently diagnosed!

Postby PCUK Nurse Jeni » Thu Nov 01, 2012 10:09 am

Thanks Susikis and Sue.

It is very interesting hearing all the information on Nano-Knife. Sueba is right in that a lot of scans can be sent electronically now, provided the receiving end has the same equipment. It makes things a lot easier, and is safer in terms of data protection etc...

Just one comment on stents - metal stents are usually used when there is no possibility of surgery ie: with metastatic disease, whereas plastic stents are usually used as a stop gap before surgery. You may also find that plastic stents are used regardless, but may need changing at some point. Depends on the local practice. Metal stents are better if a person is having chemo as there is less chance of them getting blocked/infected. However, it can still happen.

Kind regards,

Jeni.

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Recently diagnosed!

Postby DRAD3 » Thu Nov 01, 2012 6:44 pm

Don't think metal stents standard everywhere - Gary had plastic stent in the bile duct with a view to fitting a metal one only if the plastic one became a problem, which never happened. It is definitely worth asking though, if the type of stent later effects decisions about treatment options. We are in the Birmingham area, so perhaps it depends where you are.
Deb
x

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Recently diagnosed!

Postby Sueba » Thu Nov 01, 2012 11:21 pm

Hi
Thanks for the discussion on nano knife.yes my husband has a metal stent in which was put in 2 weeks ago a week after diagnosis to relieve his jaundice and because he is classed as inoperable,which I think is the norm here. We have had an email back from the hospital to say they have looked at the scans(they downloaded them off the system) and he may need a further scan.Mick has emailed them back to say he is in hospital recovering from today's biopsy and that he is set to start chemo next thurs/Friday and that he has a metal stent fitted.So we shall wait for a reply........
Thanks sue for your reply my heart goes out to you,thankyou for having the compassion to try and help someone else!
Big hugs
Sue
Xxx