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: 7
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: 1087
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: 7
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: 1087
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

dw010
Posts: 7
Joined: Mon Apr 22, 2019 8:20 pm

Re: Our story so far

Postby dw010 » Mon Oct 14, 2019 2:38 pm

An update on my Mum.

We had our 6 week review with the Professor today.

My Mum has had no chemo since the middle of July. She is feeling good, no symptoms from the PC at all. Her appetite remains good and she has gained 2kg in the last 6 weeks.

She is undergoing physio to regain her strength, her neuropathy is all gone and she is swimming and walking, at first she had a rollator then progressed to a walking stick and has been walking aid free for the last three weeks.

At her review her CA19 has remained stable at around 200 since the chemo stopped.

She has been enjoying life again, getting energy back and last week she cooked the whole family (all 16 of us) a roast dinner (this was a goal she'd set herself to achieve). She is no longer napping during the day either.

She has another appointment in 6 weeks or if she starts do feel ill earlier.

StPancreas
Posts: 11
Joined: Tue Aug 13, 2019 10:49 pm

Re: Our story so far

Postby StPancreas » Mon Oct 14, 2019 4:59 pm

Thank you for sharing you Mums story. How lovely to enjoy that roast dinner together. She must have been so chuffed. Its great to hear you have got some normality back. I hope it's long lasting for you all.

dw010
Posts: 7
Joined: Mon Apr 22, 2019 8:20 pm

Re: Our story so far

Postby dw010 » Mon Oct 14, 2019 8:53 pm

Thank you StPancreas we're making the most of every moment, so lucky to be at this point.

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Our story so far

Postby PCUK Nurse Jeni » Tue Oct 15, 2019 12:51 pm

Hello dw010,

Thanks so much for your encouraging post and update on your mum.

It really is fantastic to hear such good news, and that your mum is feeling so well, gaining weight, mobilising better and able to achieve her goal of cooking the roast dinner.

To have such stability of the cancer is also an excellent response to chemo - as I said previously, it will bring encouragement to others who are about to embark on chemo. It often conjures up very negative images, so having something which is positive is so helpful.

As StPancreas said, long may it last.

Kindest 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: 7
Joined: Mon Apr 22, 2019 8:20 pm

Re: Our story so far

Postby dw010 » Tue Oct 15, 2019 2:13 pm

Thank you Jeni, it really is amazing how well she is doing and feeling and getting stronger each day.

Theresa Upton
Posts: 64
Joined: Thu Oct 11, 2018 4:39 pm

Re: Our story so far

Postby Theresa Upton » Mon Oct 21, 2019 8:17 pm

Hi DW. I have just read the story about your mum, that is just amazing and I am so pleased that she is doing so well, it truly is an inspiration when you hear such good news. I had a great response to folfirinox and I am also on a chemo break, I haven't had any chemo since the end of August and my recent scan has suggested that my tumours are stable. I had a blood test today and will be seeing my oncologist tomorrow, hopefully I can stay chemo free for a long time. Check out Camille Mosses story, it really gives hope to us all. I hope your mum continues to remain well and that her tumours stay asleep for a long, long time.

Kind regards

Theresa

dw010
Posts: 7
Joined: Mon Apr 22, 2019 8:20 pm

Re: Our story so far

Postby dw010 » Thu Oct 31, 2019 1:11 pm

Hi Theresa

That's great news about your stability and long may it continue.

I have read and Camille Mosses her story gives so much hope.

Keep in touch.