A forum for advanced pancreatic cancer issues

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marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Hi..from a newbie

Postby marie souter » Thu Jan 23, 2014 2:45 am

Cathy,

Hugz to you, it was interesting reading your side of things from the other perspective I guess as my mom was always quite sickly to the point of vomitting I think perhaps from the outside looking in she probably would've had an awful time of it .. I think for her maybe she made the right choice .. I am so pleased you and your lovely Jonathan managed to have that wonderful summer break away, all those lovely memories .. those amazing pics to look back on .. you did him proud honey xxx


Love and hugz
Marie

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Hi..from a newbie

Postby MSH » Thu Jan 23, 2014 9:07 am

Hello Lesley,

I don't think it's selfish at all, I think Lincoln had it right with his "In the end, it's not the years in your life that count. It's the life in your years."

I'm a big believer in keeping options open. I'd see what the scan shows, recover a bit more from the chemo, and discuss options with your oncologist.

I hope it's good news.

Mark

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Hi..from a newbie

Postby cestrian » Thu Jan 23, 2014 10:01 am

Hi Lesley

Very much your own decision and absolutely clear that you need to balance the benefits of any treatment against adverse effects on your own quality of life. I discussed this quite extensively with my GP when first diagnosed and made the decision to give chemo a whirl but only to the point where life was still of an acceptable quality. My thinking was 4 months decent quality was worth far more than say 6 or 7 months of miserable existence. Luckily for me side effects have varied from non-existent to minimal so I've had no decision to make so far and I'm now 8 months on from initial prognosis and, touch my bald head, still pretty well.

Wilko Johnson, the rock guitarist, apparently declined chemo because of his perception of the side effects and is still going strong so we are all different and choose our own path.

Very best wishes that you'll remain on an even keel and get all the support you need in taking what is the right path for you.

Love and Peace

Mike

Lels
Posts: 13
Joined: Tue Sep 24, 2013 4:10 pm

Re: Hi..from a newbie

Postby Lels » Fri Jan 24, 2014 10:17 am

Hi everyone, many thanks for all the sound replies. I have an appointment on Monday for my scan results and will talk to my oncologist then.

It seems really odd making a decision purely for myself, everything usually revolves round the family and what is best for them, parents are just not used to putting themselves first !!

I will let you know how I get on, meanwhile I hope you all have a lovely weekend.

Love
Lesley

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Hi..from a newbie

Postby marie souter » Mon Jan 27, 2014 6:01 am

Good luck today Lesley

xx

Lels
Posts: 13
Joined: Tue Sep 24, 2013 4:10 pm

Re: Hi..from a newbie

Postby Lels » Tue Jan 28, 2014 11:27 am

Hi everyone

Well, I had realy good news at the hospital yesterday. No change in the tumor in my pancreas and only a slight thickening of the peritoneum one, which they didn't seem too bothered about. I mentioned that I did not want to continue with chemo, and they said tat they would prefer it if I did, but that it was up to me and they would keep an eye on me with scans etc. Next one in 2 months, so fingers crossed. Its 10 months now since I was diagnosed with stage 4, I feel blessed to have come this far.

Take care

Love
Lesley x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Hi..from a newbie

Postby nikkis » Tue Jan 28, 2014 2:08 pm

fabulous, fabulous new Lesley,
Best wishes,
Nikki

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Hi..from a newbie

Postby nikkis » Tue Jan 28, 2014 2:09 pm

fabulous, fabulous new Lesley,
Best wishes,
Nikki

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Hi..from a newbie

Postby marie souter » Tue Jan 28, 2014 2:31 pm

Brill news .. keep on keeping on xxxx

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

Re: Hi..from a newbie

Postby J_T » Tue Jan 28, 2014 4:05 pm

Great stuff Lesley. Making that decision must have been extremely hard but I'm sure you're happier now you have made it.

Good luck on the rest of your journey.

Julia x

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Hi..from a newbie

Postby belgrade » Tue Jan 28, 2014 7:00 pm

Good news Lesley and long may it continue. Wishing you all the very best for 2014.

Hilary x

PCUK Nurse Dianne
Posts: 284
Joined: Tue Aug 14, 2012 3:29 pm

Re: Hi..from a newbie

Postby PCUK Nurse Dianne » Thu Jan 30, 2014 2:45 pm

Hi Lesley,

Great that you have had so much support form the forum. I hear everything you say, and it is great that there are no huge changes on your CT scan, well done. I will offer one piece of information, only for you to read and consider. Often people will feel that the chemotherapy has been very difficult and after a break with some lovely quality time, it is very difficult to contemplate ever going back on treatment. You could have a treatment break, ie another month or so without chemo and enjoy some quality time doing things with your family, and then at your next scan reconsider treatment if there is any evidence of changes. The other alternative is to consider a varied form of chemotherapy. If patients who have had Folfirinox and not coped well with the side effects could have Gemcitabine +/- any of its combination drugs. Gemcitabine is usually well tolerated and is often tolerated very well in the older age group, or those who may not be able to tolerate Folfirinox. Has anything like this been mentioned or discussed with you? That way you have the reassuring factor that you are having chemotherapy, at the same time also able to continue on and enjoy doing what you want.
If you want to chat about this, please feel free to be in contact and we can chat through any scenario if you wish.
Best wishes,

Dianne
Specialist Pancreatic cancer nurse,
Support line