A forum for advanced pancreatic cancer issues

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
dw010
Posts: 4
Joined: Mon Apr 22, 2019 8:20 pm

Our story so far

Postby dw010 » Mon Aug 19, 2019 5:20 pm

Hi, this is my first post here.

My Mum (diagnosed Mar 29 age 69)had her 4th cycle review of her gem/abrax treatment, good news is her liver mets and lung nodules are completely gone. Her main tumour has shrunk 64% and the professor said all signs /scans point to it being dormant, in that what remains is not active.

Bad news is she developed pneumitis a rare reaction to gem/abrax which means she can't have it anymore. The Professor recommended a chemo break but will be monitoring her with bloods/scans every 2-4 weeks. Folfox will be her 2nd line treatment once needed. He also testing genetics as suspects she may be brca due to family history and good results from gem abrax, which would also open up new options for treatments. He said he views the gem abrax as being highly successful but was lucky they caught the pneumitis before it caused permanent damage or worse, so I guess for now it's fingers crossed the dormant period is a long one, what a roller-coaster. He will also molecular profile the tumour before next treatment but doesn't want to disturb it at the moment.

Any advice welcome.

PCUK Nurse Jeni
Posts: 1075
Joined: Mon Jun 14, 2010 1:30 pm

Re: Our story so far

Postby PCUK Nurse Jeni » Thu Aug 22, 2019 11:45 am

Hi DW,

Thank you for your post.

So sorry to hear that your family has been affected by pancreatic cancer with your mum's diagnosis.

However, this is a fantastic response to the Gemcitabine and Abraxane. Thanks for sharing this positive news, as I am sure it will give inspiration to many.

This is unfortunate that your mum developed pneumonitis - this is likely from the gemcitabine. I wonder if there is any scope to ask whether the abraxane can be given on its own? I have not heard if it being given on its own, but might be worth asking the question?

It looks as though she is being well monitored and followed up, with all the necessary scans/bloods etc....It does sound like there is a good plan of care in place.

As you say, hopefully the cancer will remain inactive for some time.

Feel free to contact us on the support line - details in the signature below - should you need further help.

Kind regards,

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

dw010
Posts: 4
Joined: Mon Apr 22, 2019 8:20 pm

Re: Our story so far

Postby dw010 » Fri Aug 23, 2019 2:03 pm

Thanks for your kind words Jeni, I will mention the abraxane and ask about the possibility.

Do you know anything about Y90 radiation treatments? Is it something that is available in the UK for pancreatic cancer at my Mum's stage?

best regards

DW

PCUK Nurse Jeni
Posts: 1075
Joined: Mon Jun 14, 2010 1:30 pm

Re: Our story so far

Postby PCUK Nurse Jeni » Fri Aug 23, 2019 3:46 pm

Hi DW,

Thanks for this.

Y90 is radioembolization. I have not heard of anywhere in the UK which is doing this in terms of pancreatic cancer.

It might be worth a conversation with the oncologist also given that the metastases in the liver and lung have disappeared, whether radiotherapy might be an option to the pancreatic primary tumour. However, possibly not likely, as radiotherapy is localised treatment. So not used in metastatic disease.

Technically there is no sign of the metastases now - so its worth asking?

Please do email us on the support line if you need to DW.

Kind regards,

Jeni.

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