A forum for any other issues around pancreatic cancer

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pshirley6
Posts: 3
Joined: Sat Feb 16, 2019 9:41 pm

New to this

Postby pshirley6 » Mon Feb 18, 2019 12:46 pm

My husband was diagnosed with pancreatic cancer metastasised to liver on Jan 2 nd. Ca 19.9 came back negative. He had been admitted with blood clots which led them to find the cancer. Since then all they have done is arrange an mri for this week. Oncologist told us he has 4 mths with no treatment and 6-12 with.... Should they not be moving faster? No treatment and we are over 6 weeks in...

PCUK Nurse Jeni
Posts: 1076
Joined: Mon Jun 14, 2010 1:30 pm

Re: New to this

Postby PCUK Nurse Jeni » Tue Feb 19, 2019 4:14 pm

Hi there,

Thank you for your post, and you are welcome to the forums, although understandably, not a place of your choosing.

I am so sorry to hear that your life has been affected by pancreatic cancer and that your husband has been diagnosed.

Has your husband had a biopsy yet in order to find out the type of cancer? This might be done from his liver? Or is this in the pipeline?

And do you know if his case has been discussed at the specialist centre at all?

Hopefully, you will have the contact details of his Clinical Nurse Specialist at the hospital - perhaps you could have a phone conversation with them to see what the next steps are and when this will take place, highlighting your concerns about the time frames which have elapsed?

If you don't have the contact details, you could access your husbands consultants secretary and ask them to assist you?

Please do email us - contact details below - or call us and we can help you further individually.

Kindest regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

pshirley6
Posts: 3
Joined: Sat Feb 16, 2019 9:41 pm

Re: New to this

Postby pshirley6 » Thu Feb 21, 2019 10:59 am

Hi Jeni.
Thankyou for your reply.
He hasn't had a biopsy yet. He had an mri yesterday, the results of which are due next wed. We will not be leaving there until we get some answers and appointments in place. We are hoping the biopsy will follow on from yesterday's mri.
Thankyou for your time.

pshirley6
Posts: 3
Joined: Sat Feb 16, 2019 9:41 pm

Re: New to this

Postby pshirley6 » Wed Aug 07, 2019 11:00 am

Since my first (and only post) things have got much worse. After forcing the issue with the consultant (we refused to leave without organising a biopsy, a care plan and chemo dates). The biopsy confirmed the worst and chemo started the week after. He was given gemcitabine only. He had no side effects. A l after scan showed that the pancreatic and liver cancer had reduced in size but there was a new lesion.. tho, as there was over 2 mths between first scan and start of chemo it was decided that the "new" lesion may have already been there. Gem continued (we even had a week away in Spain) but weight loss is very apparent. They introduced abraxane but he had a bad reaction and went back to gem only. Due to weight loss and continual visits to both gp and hospital with lower stomach pain a scsn was ordered. Finally, after weeks of visits, it was announced that the cancer has spread to bowel altho the pancreas and liver stable so now chemo stopped
They are trying him on capecetabine from next week.....
The biggest problem is the constant bowel pain.. It never goes... The zomorph has been almost doubled but still the pain is there... This stops him eating, which is obviously adding to weight loss....
Is there anything anyone can suggest to help?

PCUK Nurse Dianne
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

Re: New to this

Postby PCUK Nurse Dianne » Thu Aug 08, 2019 12:56 pm

Good morning Pshirley6,

Thank you for posting again with concerns. I am sorry to hear of your struggles and the difficult time you have been managing alongside your husband.

I wondered if you have had any support around managing nutrition, and if anyone has given you information about the use of pancreatic enzymes? There may also be some guidance we could give you about pain management.

I will make contact with you separately.

with kind regards,
Dianne
Pancreatic Cancer specialist nurse
Pancreatic Cancer UK
Support line: 0808 801 0707
email: nurse@pancreaticcancer.org.uk