A forum for any other issues around pancreatic cancer

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Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Newbie just searching for something or answers or suppor

Postby Dandygal76 » Tue Aug 16, 2016 10:38 am

Have you had your tumour profiled? I would be very selfishly interested if you have... we are doing this for my dad now. There is also a blood profiling I saw online that was promising. You know I wish you the absolute best but I would not mind some more detail of your treatment... if you can manage it of course. I would take no offence if you could not. x

deafy
Posts: 12
Joined: Fri Jul 22, 2016 9:41 am

Re: Newbie just searching for something or answers or suppor

Postby deafy » Tue Aug 16, 2016 12:21 pm

Howdy DG

I fully understand your desire to gain as much information as possible to put you in the best position to help with decision making. I have not had my git (affection abusive term for PC) profiled.

Where I'm treated they can carry out profiling but also have experience of how tumour sub types react to treatments, they use this knowledge to determine the likely hood of effective treatments. I discussed getting a full profile done but my consultant (who himself carries out research) advised that in my case it would not be likely to add any useful information, it was a reasonably in depth conversation which let me have to confidence to agree.

I did contact the Glasgow research people as well so that I could understand their viewpoint and my potential suitability.

Sorry if this is not useful but as we all know each persons case is different. I wish you and your dad well, you so remind me of my daughter who has been so supportive to me and is even jumping out of a plane in September to raise funds for PCUK

If there is anything else I can help with don't be afraid to ask.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Newbie just searching for something or answers or suppor

Postby Wife&Mum » Tue Aug 16, 2016 4:48 pm

Hi Deafy

I'm another one who wants to know as much about PC as possible and I'm curious about how your tumour was sub-typed if you didn't have it profiled. I was under the impression that the sub-typing could only be done by molecular profiling. Would you mind sharing this with the forum? (No worries if you'd rather not.)

Thanks and I hope you have a super holiday.

W&M (ooo)

deafy
Posts: 12
Joined: Fri Jul 22, 2016 9:41 am

Re: Newbie just searching for something or answers or suppor

Postby deafy » Tue Aug 16, 2016 6:22 pm

HiW&M
As I wrote earlier I have not had molecular profiling done. Because of the work my consultant has done and my enquiry to him we had a discussion about profiling and sub types of tumour and the differences in the ability to react to treatment.

So to make it clear I do not know what sub type I have only that it is likely to be one which reacts positively to treatment.

Sorry if I gave any other impression, often it is difficult to get the whole story across without quoting the complete situation.

Keep asking the questions though as other answers may be more helpful

Many regards
D

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Newbie just searching for something or answers or suppor

Postby Wife&Mum » Tue Aug 16, 2016 6:56 pm

Absolutely no need to apologise D, I understand. In my hubby's case there was no way to tell how he would respond to treatment apart from 'wait and see'. Very fortunately he had an excellent response....chemo followed by chemoradiotherapy made him operable and he had a Whipple in Feb 2016.
I hope that you follow the same path and become operable too.

deafy
Posts: 12
Joined: Fri Jul 22, 2016 9:41 am

Re: Newbie just searching for something or answers or suppor

Postby deafy » Wed Aug 17, 2016 10:56 am

Thank you

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Newbie just searching for something or answers or suppor

Postby Dandygal76 » Wed Aug 17, 2016 12:04 pm

D, I really appreciate your reply and all that matters in this fight is knowledge and knowing what your consultant said is helpful. So many different perspectives and I want everyone of them!

Thank you for your kind words, I would be interested in sponsoring your daughter if she has a Just Giving page. Anything to help the good cause! I know it sounds silly but it meant the world to me when people from this forum sponsored my sister. Don't feel obliged to post the link though.

xxx

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Newbie just searching for something or answers or suppor

Postby Proud Wife » Wed Aug 17, 2016 12:06 pm

I too would sponsor x

deafy
Posts: 12
Joined: Fri Jul 22, 2016 9:41 am

Re: Newbie just searching for something or answers or suppor

Postby deafy » Wed Aug 17, 2016 6:44 pm

Hi
thank you ALL again for your support and kind words. My daughters just giving link follows there is some personal information on that page which I would ask you to respect although I'm sure you will

https://www.justgiving.com/fundraising/cnm

Once again kind regards and good fortune to all