Chemo failed - Now a clinical trial is being offerred

[polly239]

New to this site, but all the posts Ive read have been very helpful and there are a lot of strong and wonderful people out there.

My husband who just turned 40 last year was diagnosed with PC with spread to liver in March last year.

He had 8 sessions of chemo, streptozocin, 5FU and dacarzabine and doxorubicin, tumours were shrinking when he had CT scan in August, just had another CT scan a few weeks ago and tumours are now bigger, his cancer is inoperable.

They wont offer anything else, but is being offered to take part in a clinical trial, I find the consultants and drs difficult to communicate with. They keep saying that they have people who have been on clinical trials for 3 years etc, but wont commit to how my husband will be.

He is very weak, can hardly eat anything when he does he feels sick and sometimes is sick, has hot flushes and sweats, to me he is just poorly, He was admitted to A&E after xmas, but they couldnt pin point anything serious, and referred him back to his consultant.

I just feel that we cant get any proper answers, and they are reluctant to say anything, I want him to get better,but being offerred a clinical trial, with the chance of being put on a placebo, I dont find this very positive news.

anyone had this experience, id be greatful for your support?

[DRAD3]

Hi Polly - so sorry to hear about your husband's diagnosis. You have obviously had an extremely difficult year and having been there, I understand how you feel. So glad that you have come onto the forum and I do hope we can help and support you. You don't say what clinical trial your husband has been offered - or is it that they have been equally vague about that? I remember the frustration of not knowing what was happening - my husband's oncology team were also very vague once the chemo didn't seem to be having an effect. Whenever I was not getting the answers from GP/doctors etc, I emailed Jeni, on the support team here who was very helpful and gave me frank and detailed answers to my (many) questions - my husband had lots of symptoms that I wanted an explanation of so that I could understand what might be going on and what might happen in the future - it armed me and allowed me to help him. If you are not getting the answers you need, do contact the team - they will help in any way they can.

Will think of you and hope that things improve. We are here for you and send love and strength.

Deb

x

[PCUK Nurse Jeni]

Hi Polly,

Does your husband have a Neuro-Endocrine pancreatic tumour?

The chemo he has been on suggests so?

Let me know, and I can point you in the right direction. Email at: support@pancreaticcancer.org.uk.

KR,

Jeni.

[polly239]

Hi deb

thank you for your message, Its just awful, and I know the drs deal with this day in day out, but this is a whole new world to us, and its the not knowing what to expect.

We have been to the consultant today, they want to try BEZ235, its not got a proper name, but feel slightly better at the fact he wont get a placebo and will be monitored throughout. You just feel so alone at times, so ive finally plucked up the courage to get on here and see what help and advise I can get, and I thank you.

Jeni - yes it is Pancreatic NET....which has spread to his liver, so any advice would be greatly appreciated.

polly

[DRAD3]

Hi Polly

You are right - you do feel very alone and I, like you, was so glad that I plucked up the courage to post onto the forum - just knowing that someone would have some understanding what I was going through and be willing to listen. Sometimes just putting our thoughts down on "paper" relieves the weight of them - you have enough on your plate without carrying all those worries and concerns too! The support team are fantastic for all those technical questions and no doubt Jeni will come back to you with some info about the specifics you mention.

I do hope your husband is feeling better - keep us posted won't you and don't hesitate to use this space in any way that is helpful.

Much love

Deb

x

[PCUK Nurse Jeni]

Hi Polly,

Thanks for the information.

There is a very useful resource and website you can access regarding Neuroendocrine Tumours. These are a very specific type of tumour, and although can be found in the pancreas, the drug treatment for these is very different to the most common type of pancreatic cancer.

If you contact the NET Foundation here: http://www.netpatientfoundation.org/

They also have a helpline to contact: 0800 434 6476

Catherine is the name of the nurse, and if you can say that you got the contacts from PCUK.

Hope this helps,

KR,

Jeni.