January 8, 2020 at 12:28 pm #23564
Unfortunately, I have relapsed with a mass at the tail of my pancreas. On 30th December I had an EUS with bioposy and this Monday it was confirmed as melanoma.
I had started to feel unwell in October with vague symptoms of nausea, indigestion, stomach pain and started to monitor the occurence. I already had a review CT scan booked for 9th November which I saw as a safety net. Certain foods caused more problem so by cutting out and being unable to face coffee, tea and my occasion wine…drat! I felt a little better.
A PET scan is now imminent and by next week we will know whether it has travelled. I am still under the Oncology consultant in Cambridge, whom I eventually found in 2013 and has been wonderful. By the time I reached her tumours were top and tail pancreas, lung, bone and brain plus mets. I was given one dose of ipilimumab before brain surgery in April 2013, followed by three further doses. I have had no other treatment, apart from previous surgery leg, buttock.
So the one dose of ipi has served me well for the past 6 years.
Obviously I am very concerned but more hopeful than all those years ago when most of us on this forum were facing a certain death. The support of this forum during those times will never be forgotten.
I will keep you updated and your valued advise will again be greatly received.
Best wishes to all for 2020
Diana Norfolk.January 8, 2020 at 12:57 pm #71061
so sorry to hear about your recurrence. I would be optimistic about your response to the PD1 drugs since it took little IPI to clear you up before. It sounds like you have you a very good immune system! Please let us know how you are doing and your next treatment will be. Take good careFebruary 3, 2020 at 8:48 am #71062
Well the treatment ‘might’ not be the same as US. However, I am currently imminently awaiting surgery.
Following the CT, then EUS biopsy I had a PET scan to see if the cancer had traveled. It would appear at that stage it was expected to have in view of the time period. In October 2012 I had tumours in the pancreas and by January 2013 it was found in lung, lymph, bone and if the PET had been read correctly! brain. Exactly same time frame.
Anyway to their surprise it is a solitary tumour at the tail of the pancreas. However it is felt to be too big to wait for drugs to work and surgery should give a better survival rate. I have had further MRI for the Pancreatic team to agree to surgery and the only disappointment (bit of an understatement) last week is instead of a distal pancreatectomy they need to carry out a subtotal plus spleen.
It would appear it is ‘unusual’ for this situation to occur. I presume due to it being ‘solitary’ for some period of time and also that it is consider resectable. I have read an article in the Journal of the Pancreas dated March 2019 ‘Surgical Treatment of Solitary Malignant Melanoma Metastasis to the Pancreas’ (I know sad life
but I moved on quickly to better things!) and part of the conclusion was ‘there is sufficient encouraging experience that it should be considered in selected patients, as it may provide significant survival benefits.
So I waffle on but for the moment that is where I am at. All pre assessed for surgery and now just need a slot.
Obviously I would be interested to hear if there would have been a different approach in the US?
I did read Thomas Marron’s piece on the forum in December 2019 about when to stop treatment with immunotherapy and shortening treatment. It would seem in the US they keep people on treatment for long periods whereas as you know I only had one course (four infusions). What’s the happy medium….?
Anyway, I will keep you updated as I progress.
DianaFebruary 4, 2020 at 12:33 pm #71063
Surgery is often an excellent remedy to get rid of a tumor because if it remains, it can continue to seed its offshoots in the rest of your body. I think it is often forgotten in the U.S. because we are so focused on pharmaceutical remedies. Don’t worry about losing your spleen, plenty of people do without significant harm to their quality of life. I know you are courageous and will get through this fine. Your attitude is quite commendable. As always, we will wait to hear of your progress and be here to wish you well.February 6, 2020 at 6:06 pm #71064
Thanks for your positive comments Catherine.
They will be operating on Monday 10th February.
As you say it is difficult to find the balance between surgery, all the new drugs, how often they are administered, the toxicity to people and ensuring a healthy and well balanced life style.
But hey hopefully we will all find a pathway that works well for each of us.
I will be in touch again as I progress,
DianaFebruary 7, 2020 at 1:00 am #71065
Fingers and toes crossed on the 10th! I hope all goes well and please let us know how you are feeling. Surgery is definitely a good option! Take good care and we look forward to hearing from you.March 4, 2020 at 11:35 am #71133
Well I have been home a couple of weeks recovering with the help of my husband, two lovely springer spaniels, countryside and the sea. So an ideal place to recoup.
The plan is to scan again in April and continue three monthly. The last PET scan in February showed no other tumours except at the tail of pancreas which has now been removed. Drugs that have been mentioned are nivolumab and the Keytruda one Pem…..? if any new tumours show when scanning. As you say ippi worked so well for me I do worry about change. However, I am being told these two drugs give far better results.
I assume in America Stage IV people are giving ongoing immunotherapy and never actually come off to see if their own immune systems are taking over, as such. Does this seem to stop any relapses? as I haven’t seen many posts regarding relapses. Yet in the UK I do see people who have one course of infusions and last 10 years without any drug maintenance. Finding that balance and ensuring a quality of life isn’t easy. However, for the past nearly seven years I had no health issues but as you said I do live a very well balanced and healthy lifestyle since moving to Norfolk shortly after the brain surgery and ippi.
We now live 90 minutes from family and friends, a fourth grandchild was born on Monday 2nd March – my birthday, what a surprise! However, even this was done on purpose and we wouldn’t change it. It is very easy to get low when trying to appease everyone.
So all is well for now and I will keep in touch.
With thanks and best wishes
DianaMarch 4, 2020 at 11:41 am #71135
Moving 90 minutes away was done on purpose…. not having a fourth grandchild on my birthday LOL
Couldn’t see how to amend. xMarch 6, 2020 at 12:46 pm #71137
Sounds like you are doing well. so happy to hear from you as you’ve been in my thoughts. Sounds like a lot happening in your family as well. Life goes on! Please stay in touch. Will you start immunotherapy now? (the PD1)March 13, 2020 at 12:20 pm #71157
The answer to immunotherapy is ‘no’. Its a concern that I toss around most days at present …….this decision was based on the tumour at the base of the pancreas having not spread. It was there since at least October 2019 when I first felt unwell, and highly likely it began a few months before. The PET scan at the end of January 2020 showed no other signs of cancer and another scan for the surgery in February also fine. So I am having an MRI and CT in April, and 3 monthly thereafter.
A watch and wait game. First signs of spread then immunotherapy.
Personally, I feel it will come back, but hopefully I might go a few more years without another flare up. So it was a case of do I have immunotherapy now and it won’t be ippi ,which I tolerated so well, but a newer drug (due to better % rates) with possible side effects, when I have no other measurable tumours or instead play the watch and wait game.
Only time will tell if the right decision was made!…..
I added a picture to my account as I think it is a great idea to put faces to people on the forum. It hasn’t been uploaded was there a problem?May 22, 2020 at 2:03 pm #71220
Would love to say I have good news but regrettably the first scans carried out 21st May (decision made by all to delay one month due to coronavirus) have immediately shown further tumours. The liver being the organ involved with other deposits. Am I disappointed….well obviously as it spread so quickly after surgery yet had stayed in the one area for many months. However, I always felt it would be a case of when not ‘if’. So not great but within 10 days I will be on pembrolizumb 6 weekly. As you know this will be my only my second immuntherapy in 7 years. Previous April 2013 one course of ippi.
When do you usually see people starting to respond on this drug? All appointments are by telephone call and it was only Wednesday this week I received the news and really just focused on the next plan of action.
Well apart from that we continue in semi lockdown in the UK. At the stage you can exercise where you want in the UK (except Scotland and Wales) using social distancing but no family contact. Not even gardens. I am fine about going through this on my own. I usually attend scans appointments on my own and just hot foot it back to my home asap.
I hope you are fairing well in these current circumstances and all your animals are helping keep you sane.
Diana – NorfolkJune 16, 2020 at 1:03 pm #71252
I hope you respond to the pembro! It can be amazing in the response for some people. I must tell you this forum will shut down permanently soon as the spam and related changes have made it too difficult. I am ALWAYS available by email: firstname.lastname@example.org. please keep in touch! Our foundation is smaller now but mighty in our mission. Hoping to continue to hear from all.
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