Peritoneal mets. Please help

[Vasil]

Hello. Can anyone please share some experience with peritoneal mets? Is it more dangerous than spread to the liver? My father had multiple nodules in the peritoneum upon diagnosis. He had 12 rounds of Folfirinox and tumour shrank a little bit but the peritoneal mets have increased. This is the lining of the abdominal cavity. I guess these mets are not very common. Please someone?

[Canvip]

Peritoneal mets is unfortunately common, along with spread to the liver and lungs. If there is ascites present, then there is a good chance that cancer has spread to the lining. The oncologist we worked with said that testing the abdominal fluid is not definitive though i.e. negative for cancer does not necessarily rule it out. He also said that it is tumours in the lining that can produce the fluid accumulation. If your father has discernible nodules, I would look into targeted chemotherapy that can be injected right into the lining. Systemic chemo would have a hard time reaching the lining I have heard. I hope this is helpful.

[Vasil]

Hi Canvip and thanks for your reply. You are right, chemo does not work on the peritoneal lining so we are opting for the PIPAC procedure, pressurized intraperitoneal aerosol chemo injected straight into the peritoneum. Many thanks and best wishes to you.

[taoofpooh]

Hi Vasil.

Can you tell me please is the PIPAC procedure being carried out in the UK, if so NHS or privately?

Kind Regards.

Paul.

[Vasil]

Dear Paul, unfortunately I am living in a small Eastern European country, Bulgaria. Pressurized intraperitoneal chemotherapy gives very good results and it is a standard procedure in Germany for example (the equipment is manufactured in Germany so I learn). It is also offered in Denmark. A chemotherapeutical agent is being applied laparoscopically so it is basically enhanced laparoscopy and not a surgery. It is repeated every 4 to 6 weeks but usually it is better to be combined with systemic chemo like Folfirinox or Gemcitabine. I presume the nurses would be able to inform you about opportunities in the United Kingdom. I did read lots of oncology articles about this procedure. Initially it was used in ovarian cancer but for the last few years there are brilliant results for pancreatic cancer as well. It is a novel approach. But not a clinical trial. It is widely used in certain countries like Germany and Denmark for example. My father is being treated in Istanbul now and since Turkish physicians have graduated or specialised in Germany they offer it here as well.

Otherwise how are you feeling Paul? Have you had a recent scan? With kindest wishes Vasil

[Canvip]

Hi Vasil, That is so good to hear that the treatment is available for your father. Combined with standard chemotherapy, there is good hope it will work. I have been following your story, and also Paul’s story and I wish everyone the very best. My mother had a similar presentation of disease but sadly passed away earlier this week before treatment could be started.

[Vasil]

I am so sorry. Please accept my deepest condolences. If you need to talk to someone I will be there.

[Canvip]

Thank you, Vasil, I appreciate it.

I see the dedication, love and effort you are putting in to your father’s care and well-being. I hope that he responds well to all of the treatment he is receiving. Please post an update after the PIPAC procedure. We unfortunately did not have that much time for my mother after diagnosis. But I find comfort and and hope in reading about treatment success stories so that I know that people can fight this terrible disease.

[PCUK Nurse Dianne]

Dear Canvip,

I am sorry to hear of your sad loss, I am sure these are sad and overwhelming days for you at present. I hope that Mum was comfortable and at peace in her last days and that you were able to be with her.

Thank you also for supporting other 'forum family' on this forum. Take care of yourselves in the days ahead.

Thinking of you.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

[Canvip]

Thank you for your kind words. This board is incredible, and actually the only forum that I could find specific to pancreatic cancer. When going through this with my mother, it was helpful to read about other people’s similar situations.

Best wishes and thank you for doing what you do.

[lucyjev]

Hi all

My brothers has stage 4 (metastatic) as it has spread to the omental and peritoneal areas. Are there any updates on treatments available in the UK on this (private or NHS?) or how we go about getting treatment abroad - specifically the PIPAC procedure? Thanks

[Nicolamc]

On 3/14/2021 at 10:56 AM, lucyjev said:

Hi all

 

My brothers has stage 4 (metastatic) as it has spread to the omental and peritoneal areas. Are there any updates on treatments available in the UK on this (private or NHS?) or how we go about getting treatment abroad - specifically the PIPAC procedure? Thanks

 

I'm really interested in this area too. My husband has just received the sane diagnosis. He had a distal pamcreadectomy in April with planned adjvunt chemo due to start this week, change of plan when CT showed spread. After any help. He's just 51 and we have 4 children. Can't bare that there isn't more that can be done. 

[Nicolamc]

On 3/1/2021 at 4:10 PM, PCUK Nurse Dianne said:

Dear Canvip,

 

I am sorry to hear of your sad loss, I am sure these are sad and overwhelming days for you at present. I hope that Mum was comfortable and at peace in her last days and that you were able to be with her.

 

Thank you also for supporting other 'forum family' on this forum. Take care of yourselves in the days ahead.

 

Thinking of you.

 

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Hello Dianne,

Are you aware of any progress to offer the pipac procedure in the UK? My husband has just been informed his planned adjvunt chemo would change to palliative due to peritoneal spread. Desperately seeking options. Thank you. 

[PCUK Nurse Dianne]

Hi Nicolamc,

Thank you for your post, I am so sorry to hear of your Husband's change in condition and treatment plan. I am sure this must be such an overwhelming time for you all at present in dealing with new information and treatment changes.

Nicolamc I have a link below that may be of interest to you and others. I believe there is currently a trial running in both Wales and Imperial Hospital, London for people with colorectal cancer who may be considered for PIPAC. 

https://www.bowelcanceruk.org.uk/news-and-blogs/research-blog/pipac-a-clinical-trial-looking-into-a-new-type-of-treatment-for-advanced-bowel-cancer/

At present, I am unaware of any service provision for PIPAC treatment for those people with pancreatic cancer.

Nicolamc, if you wish to send an email with a little information to the support line, I am able to give you some further suggestions outside of this forum.  Email: nurse@pancreaticcancer.org.uk.

With kind regards,

Dianne

Pancreatic Cancer Specialist Nurse                                                                                                                                      Pancreatic Cancer UK                                                                                                                                                          Support line: 0808 801 0707                                                                                                                                                Email: nurse@pancreaticcancer.org.uk

 

 

[Vasil]

Okay, we didn't have PIPAC. doctors said it would made things worse and bring about even more spread. Unfortunately chemo doesn't seem to have any effect whatsoever on these peritoneal mets. My dad has "multiple peritoneal tumours" some of them as large as 2 cm. He is also in much pain.

[Vasil]

Hi Nicola. How is your husband? Is he on chemo? Can you relate? Is chemo effective for these peritoneal spreads? In my dad's case they don't change and even new lesions appear although the pancreas seems stable. I just need to talk to someone in a similar position