Pancreatic and liver metastases

Hello, I am about a year ahead of your Mum having received a similar diagnosis in December 2022.My initial symptom was inability to swallow. After diagnosis, my condition deteriorated relatively quickly and deeply with inability to eat. I started chemo in Jan 2023 and in the first quarter I lost weight and continued to be unable to taste or eat any substantial food, living mainly on home made soup, custards etc. All heavily laden with butter and cream. Progressively my swallowing issue (Barrett Oesophagus) went away allowing eating of solids to return albeit with slower return of appetite and taste. I lost about 10kg during this time. I can recommend this diet and the judicious use of the Fortijuice and the yogurt drink from the same supplier. As my taste and appetite re-emerged my digestive system did not return to its' normal function and it wasn't until I had to present to my local A&E did I get advised to take Creon (a multi- enzyme) each time I ate. For me this was transformational in improving digestion efficacy and returning to more normal bowel movements. I continue to take these now.

Since the end of Q2 2023, my physical condition improved and recently I returned to my starting weight (around 77kg from a low of 65kg). I need to say at this point that the Marsden has been excellent on my treatment. Q3 and Q4 of 2023 have seen a steady improvement in my physical condition. I have had around 18+ cycles of chemo with changes in Q2 to seek to minimise CIPN (chemotherapy induced peripheral neuropathy) by removal of the worse offenders i.e. the platinum containing chemistries.Unfortunately, for me, this has not avoided the severity of these side effects.

While, surprisingly to me, I enter 2024 on a relatively optimistic note and on an extended pause from chemo (not sure why?) and somewhat inconclusive set of tests that sought to clarify my status. Without solid evidence and / or data, it's hard to underpin this optimism with a solid foundation. I want to credit my family and friends with their help and encouragement during this horrible period and I encourage you to cast that support network as broadly as you can as it will be needed. I would recommend avoiding internet searches  or keep them to a minimum. I wish you well and be prepared for low points as they appear unavoidable and are the points that you will need that support.

Sorry thought I had replied, thanks so much for your advice very much appreciated. Ordered some fortifjuice with her GP, she has been on Creon for a week or so now. Just waiting on biopsy to see if chemo can be matched. Wishing you all the best for your journey. 

No problem and thanks for getting back to me. There are some related yogurt style drinks that have a higher protein content which are OK too. Please reach out to the Marsden nutritionists too.

Will do thanks so much. 

Thank you. Is that The Royal Marsden NHS Foundation Trust?

Apologies I was referring to Royal Marsden Hospital in Chelsea.

Ok perfect thank you. 

Hi, I am just wondering if you can provide any more information about the Royal Marsden? We have just had the diagnosis through for my dad (Stage 4 PC) but we wanted to get a second opinion and I have read the Royal Marsden is good? Any advice would be most welcome. TY

Hi there, sorry to be slow in responding. After 15 months, I continue to rate this hospital highly. Imperfections are overcome by the quality, attitude and general demeanour of the staff. The weaknesses (I'm not sure that is the right term to use) in my experience was around diagnosis. Talking to other outpatients, a theme arises that suggests that a) everyone's experience is somewhat unique and b) few cancer presentations seem not to definitively point to a definite primary. I was in the same category as your dad and after probably 3-4 weeks of dithering between my local hospital and RMH, the latter decided that pancreas was the primary and started chemo promptly thereafter.

Endoscopies and biopsies were in my case not definitive (and in fact repeats post chemo have been indeterminate). My local hospital is linked at the foundation level to the Marsden such that once the suspicions started pointing to pancreatic cancer, my case was discussed at their joint multi-disciplinary meetings. I hope that same opportunity works for you too as the Marsden has earned the reputation as being a centre of excellence for oncology. I will limit my comments to your central question on second opinion and recommend (if you haven't done so already) to push for that,

All the bes to you and your dad.

Sorry to hear about your mother. My brother is going through chemo right now 08/08/24 with the same diagnosis. He looks healthy eats and walks around and has pain which is controlled. His main problem is he is constipated and has had no bowel movement for 6 days. Doctors gave him mylax, suppository, and enema with no luck. By chance if you or anyone in this forum has any suggestions, please advise. He is my big brother 11 months and 5 days older than me. We went to school together played sports on the same team and now this. I hate it, my chest hurts me, I can’t eat I have to try to stay busy to keep my mind at ease. I feel your pain but with faith and strength we will make it through.