Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

panicking - has anyone had immunotherapy success with Peritoneal mets

pugs2411
Posted by

Hi,

just read the Peritoneal mets are rare and have a poor prognosis.  Please tell me someone has had some success with Immunotherapy for this?

I'm in a real state thinking that my partner may only have months left.

Thank you!

Lisa

buttercup01
Posted by

Where did u read this ?;

Try looking in the Macmillan website or Kidney Cancer UK rather than Googling it. 

 You may  have been looking at out of date/ inaccurate info ?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hello ,

Hello Lisa,

I believe that I am quite similar to your husband.  I was diagnosed with metastases on my abdominal wall on December 10th 2014 which to date have been treated with a biological therapy.  I have not actually asked if these are classed as peritoneal mets but as they are on the wall I suspect that they must be.  I have another where the removed part of the kidney used to be and another attached to the fat between the two sites.  It is likely that these were started by cells left behind as the cancer was removed as the tumours follow the track of the instrument.  I now also have small mets in my lungs the largest of which reached (I think) 11mm before it was reduced again by my treatment.

I have had an oedema in my abdominal cavity which was first reported on my CT scans about 6 months ago.  My understanding is that if an oedema is in the abdominal cavity it is referred to as ascites.  They continue to monitor mine and at the moment have no treatment planned.  My understanding is that this is no more or less common than a fluid build up in other areas of the body and the main complication is that it can interfere with the digestive system by putting pressure on it.  My oncologist seems to be totally unconcerned about this at the moment.  The main difference is that my mets were not discovered until 18 months after my operation so it appears that my cancer is not as aggressive.

It is difficult to start with and it is understandable that your mind is racing but it will slow down a bit as you get more information.  The doctors will not give you all the information at once as most people hear the word cancer and don't hear much after that.  They will give you more information as you are able to understand it.  The terminology is technical and often very specific and the doctors have studied for many years to be able to interpret all the information that they receive.  I always ask for copies of all my reports and test results and after 5 years I think I understand what most of them say but I still have to ask the medical staff why that might be.  I once ordered a copy of the DVD of my CT scan and after looking at it on my computer screen for half an hour I finally worked out which was my chest and which was my back.  I don't think I got as far as working out which end my head was at and I couldn't identify any organs and certainly could not see any tumours.

I have googled information and discovered that I was dying only to realise much later that the reports I was reading were more than 15 years old and did not take into account the new treatments.  There are no long term studies on the medications that we are taking because they have not been about for long enough to gather the information to produce a long term study.  I believe that Nivolumab was approved for use in the NHS in 2016 so I would be surprised if the outcomes have been fully incorporated into any statistics yet.

 I would suggest that you try to contact your oncology team again and discuss your concerns with them.  They will have treated a number of people already and are probably the easiest source for you to contact who will be able to give you feedback about previous patients and outcomes.  They will have chosen this treatment as having the best chance of success but will have to give the treatment an opportunity to work before they can rescan and see any difference from his previous scan.

I would try and stay away from undertaking internet searches as the information is often out of date, difficult to understand without specialist knowledge and often out of context.  By all means sort out any practicalities if you feel you need to be more organised but try to make sure that something is special about every day.  If everything goes well it will help you to take your mind off waiting for the results to come through and if time is short then it will have given you some happy memories in a difficult time.

Plan for things in the future,  I know that you were concerned about Christmas but I would suggest you plan it as if everything is going to be great.  If it is you will have a lovely Christmas and if things are not so good then you can still have the best Christmas that you can manage and create another positive experience and enjoy the bits that you can.  I was told that I was terminal on December 10th and only saw my Oncologist on December 22nd when I was informed that there were treatments available which could extend my life possibly for significant periods of time.  I have a son who was 9 years old at the time and certainly did not want to ruin his Christmas especially if it was to be my last.  I wanted it to be as good for him as I could make it and in doing so I enjoyed quite a lot of it myself.  I have enjoyed the subsequent ones more and am now looking forward to my 5th Christmas post spread.  Organising things like this distract you, help you stay positive and give you a sense of satisfaction when you achieve them.

If you need to talk to someone you can try your GP or the Macmillan helpline.  Hopefully you and your partner are sharing your feelings and worries as this helped me.  I know that the tendency is not to want to put more worry on them as they are suffering from the disease but providing you don't overload them it can actually help to try to support someone else and talking about it certainly helped to clarify my worries which were mainly about how my wife and child would cope.  I needed to sort some practical matters out and it helped when my wife admitted that she was worried that there were some things where she would not know what needed doing or how to do it if I wasn't there.

Why not try thinking about something nice that you can do this weekend, we went to the St Nicholas Fayre in York tonight, it was lovely.

Love and hugs,

Gragon x

buttercup01
Posted by

Well said @gragon

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
pugs2411
Posted by

i love this reply, thank you so much. we’ve got the oncology appointment today at 10:00, dreading it, scared he’s going to be told he’s got 6 months left xx

buttercup01
Posted by

Hi ,

How,did today's oncology appointment go?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
pugs2411
Posted by

Was the best meeting we’ve had since diagnosis, as in the people were lovely and explained all the next steps. Mark was given morphine to help with back pain and breathlessness and his oxygen levels are good, he seems so wiped out and pale which does make me worry. We’ve also been referred to a Macmillan community nurse and spoke to the family counsellor about talking to the kids.

xx

pugs2411
Posted by

Oh and Mark starts nivo/ipi on Monday xx

irishrambling
Posted by

I've been waiting to hear how you got on all day. Thank you for telling us.

buttercup01
Posted by

For some reason my 'like'button's disappeared lol. .Wanted to like all the responses to your news re oncology appointment 

It's just come back lol

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

For some reason my 'like'button's disappeared lol. .Wanted to like all the responses to your news re oncology appointment

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
pugs2411
Posted by

thank you for thinking about us. it’s still so hard seeing Mark so uncomfortable, the treatment can’t come quick enough