A forum to focus on treatment related issues and side effects from treatment

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
jamescotterell
Posts: 10
Joined: Tue Dec 18, 2012 1:58 am

A different approach

Postby jamescotterell » Tue Dec 25, 2012 9:32 am

Hi all

just wanted to let you know about a different approach to PC. I recently lost my step dad melvyn to this evil disease (RIP melv). We was 58 and should have had at least another 20 years. I`d like to help people not to go through what we`ve gone through.

I am a geneticist/biochemist and I did everything in my power to give him the best chance. Through this process i realised that there are powerful tools out there that we use in biological research to give people a better chance but they are simply at too much of an early stage for the NHS to have picked them up. We used them...

We sequenced part of the genome of his cancer and normal tissue in order to identify exactly which mutations are driving the cancer. Using this information we suggested a drug/trial to his oncologist which was more suited to his specific cancer. Cancer shouldn`t really be consdiered one disease and the best therapy depends exactly on what type of cancer that person has (i.e. which combination of mutations).

Unfortunately we were thwarted in the end by a mixture of red tape and ignorance of the oncologist to basic cell biology and couldn`t get the treatment we wanted even though they weren`t offering him anything else! We should have switched to a more experimental hospital earlier, lesson learnt.

Anyway if you want to contact me i can give you more information on what we did and how this can be done. It`s another option. Just ask the moderators to pass you my email.

Merry christmas all! Don`t give up!
James

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

Re: A different approach

Postby Sueba » Wed Dec 26, 2012 2:52 pm

Hi james
I would be very interested in hearing about your research.
My husband was diagnosed with advanced pancreatic cancer on oct 12 th,it is inoperable as the tumour is covering all the main arteries etc
He is a very fit 42 year old who has never smoked, only drank rarely and used to do about 6 hours of exercise a week!
At the moment he is receiving treatment in the north weas(not sure if we've to name places on here) aggressive chemotherapy Folfrinox (which includes oxiplatin,Irinotecan and fluorouracil) every 2 weeks,he has just had his 4 th treatment out of a 6 week cycle.Obviously he is very weary but is tolerating it well.
My husband is a GP and we have obviously been looking into anything that may possibly help him ( the best outcome would to be make him operable) and have been in touch with the Princess Grace hospital regarding the Nanoknife.
Obviously we are still reeling from this devastating news,he is far to young and fit we thought!
Any info would be appreciated
Sue

jamescotterell
Posts: 10
Joined: Tue Dec 18, 2012 1:58 am

Re: A different approach

Postby jamescotterell » Wed Dec 26, 2012 4:11 pm

Hi sue

Sorry to hear about your husband. That is very young to develop cancer! I know the feeling of frustration as my step dad was also very healthy….barely drank, didn’t smoke and was very fit.

Surgery has to be the priority so definitely keep going with the folforinix with the aim of reduction.

However it may be worth trying something else as a backup option as there’s no guarantee the reduction and surgery will work. Given the young onset of the cancer, it suggests that he may be a carrier of a germline mutation in a DNA repair gene such as BRCA1 or 2. People with defected versions of these genes are more likely to develop cancer in general since they are less effective in repairing DNA damage when it occurs. If he is a carrier he is more likely to respond to a recently developed class of drugs called PARP inhibitors (olaparib for example). The Royal marsden in london ran a promising phase I trial of this drug a couple of years ago.

Here’s the royal marsden page

http://www.royalmarsden.nhs.uk/research ... itors.aspx

The original article can be downloaded for free here:

http://www.nejm.org/doi/full/10.1056/NE ... #t=article

It works using a concept called synthetic lethality. There’s a good layman description of this idea here

http://www.cancer.gov/ncicancerbulletin/101910/page7

If I were in your shoes I would do 2 other things on top of continuing with the folfirinox. 1) Check the germline BRCA1/2 status’s and 2) do a full cancer/normal tissue genome sequencing incase that doesn’t show anything up. These tests take time so best to start ASAP.

Which hospital is he at? And did they get much tissue from his biopsy?

Get my contact details from the moderators and send me an email.
All the best
james

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

Re: A different approach

Postby Sueba » Sun Dec 30, 2012 1:53 pm

Hi again
I've been trying to contact a moderator but don't seem able to on my iPad and I currently don't have a computer,would you be able to get my details off the moderator as I am giving my permission?
Thanks
Sue

jamescotterell
Posts: 10
Joined: Tue Dec 18, 2012 1:58 am

Re: A different approach

Postby jamescotterell » Sun Dec 30, 2012 2:09 pm

ok sue...i'll contact them from my end

jamescotterell
Posts: 10
Joined: Tue Dec 18, 2012 1:58 am

Re: A different approach

Postby jamescotterell » Wed Jan 02, 2013 8:29 am

Also if anyone else out there is interested in finding out more about this option then ask the moderators and they will give you my email address.

all the best!