Kidney cancer

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

ZOMBIE AFTER TREATMENT STOPPED

Jaguar41
Posted by

My husband has cancer in both kidneys. He was diagnosed in 2014 and 5 months later put on votrient (Paz?) never could spell or pronounce it.  It slightly shrank the cancerand stopped it from spreading.  He had side effects but the main one was loss of appetite.  He was not as fit as he was before the treatment but he was still able to participate in some forms of work and socialising.  After 3 years and experiencing more side effects especially diarrhoea he was told the treatment wasn’t working anymore.  They then put him on immunotherapy in November 2017 which picked his appetite up a bit but after 5 months he had very bad health problems for a solid month and after 4 visits to A & E and being told nothing was wrong I refused to take him home and I asked a doctor to get him to A &E at the hospital where he was treated for cancer.  As it happened there was an acute oncology ward there especially for cancer patients with serious health problems. It turned out his cortisol hormone had stopped working that was believed to be a result of the immunotherapy treatment. Hence he now has to take steroids every day. By November 2018 he was having serious diarrhoea problems and it was thought it was the treatment so suggested he had a break from it.  After a couple of months of no treatment he became very shaky on his legs, sleeping most of the day and absolutely no energy. Also diarrhoea problems still.  He also experienced urine retention a couple of times over the last few years and so has had a catheter for some time culminating in urine infection after infection.  Anyway he had a meeting with his cancer doctor in August 19 and was told that they weren’t putting him on any more treatment as he wasn’t fit enough. He was also referred to the local palliative team and his GP. He has gradually got worse and For the last 2 weeks he has slept nearly 24/7 hardly eaten or drinking and gets confused sometimes.  He is always saying that something else must be wrong and they’ve given up on him as he’s now 75.  So we have talked with the doctor that came to see him today and my husband and I both agreed that he was far better on the treatment and that the side effects that the doctor thought was caused by the treatment are still present. Because of this  we have asked the duty doctor who called today to see if we can have another referral back to a cancer specialist to resume treatment.  

I’m sorry I have nearly written a book about my husbands health problems but I feel so helpless and hate seeing my once very fit healthy hubby reduced to what is now a terrible quality of life. 

What I would like to know from this community is:

1. Has anyone else had this prolonged ill health and non quality of life or is it the cancer taking its course?

2. Has anyone stopped treatment and then resumed it again?

3. Any suggestions of anything I am missing or should be doing would be very much appreciated as I getting near emotional melt down. 

If you got this far thank you x

buttercup01
Posted by

Hi thanks for reposting your post originally in Cancer treatments 

I will do the same 

Sue

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

Hi

I'm from the Kidney cancer group and suggest u join us, as I'm sure you'll get more responses that way. Please repost there so we can all see it. Thanks.


Personally I can only answer question 2:
I had a treatment break from Pazopanib for 3.5 years.
I have only just gone back on it, as I had some growth on an existing lung met and a new met in my omentum. No symptoms as yet but oncologist thought it best to restart treatment before I had any. Sensible fella!


The lack of appetite affects me as in every 3 months or so everything tastes like cardboard so I have to have a break off the meds of about a week or so.( Have already booked Xmas off.)


I also take daily steroids tho only 0.5mg. I started on them after I had a brain met in 2013 n now can't get off then, presumably coz I'm not producing enough of my own.


I definitely feel referral back to a cancer specialist is the way forward but post in the group n see what other replies you get as well.
Good luck with it all

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

Hi Jaguar41

I think the first thing I'd be asking for is a full MRI / CT scan. If the cancer is taking its course then you need to know that.

I'm on Paz and currently taking a break to rest my stomach / bowel. Paz can cause colitis and my team are concerned that I could be heading this way. If your husband is suffering extensively with diarrhoea it could be that his bowel has been damaged too - again something that you really need to know.

I almost feel as though you're falling through the gaps. A referral back is critical so that you know what you are dealing with, then you can make a decision on how to proceed. Age is not an excuse for a lack of care or treatment.

Lots of luck to you both

Jo
x
buttercup01
Posted by

Well said

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jaguar41
Posted by

Jo300

thank you so much for your comments. We too feel as though we have fallen through the gaps and my husband has just been left to the care of his GP and palliative care team.  We did talk about it and felt that he needs to be referred back to a cancer specialist.  It could be that they feel they can’t do anything more for my husband,which is more or less what his specialist told us, but there has been no truths told and he has never been told he has a certain amount of time left.  If that had been the case we would at least know what was going on with my husbands cancer. In all the 5 years he was under the cancer team I repeatedly asked for us to see his scan results but they never showed us and my husband always felt like he was a test case.  

Gragon
Posted by

Hi ,

I'm sorry to hear that you feel like you have been abandoned and not given the information you require.  You can request copies of the scan direct from the radiology dept although they cost about £10 each and to be honest I can never understand what I am looking at.

The Oncology team should be able to provide you with copies of the reports of these scans and these are a bit easier to understand although some of the terms might take a bit of research.  I am not sure how you get these retrospectively from the team.  However, copies of all these reports should have been sent to your GP at the time so should be available on the GP's records.  Whilst the hospital normally provides these free of charge most surgeries have a charge for providing you with copies of information.  I'm sure if you ask your GP they would be able to advise you what is the easies way to get hold of your husbands records.

Wishing you all the best,

Gragon xx

buttercup01
Posted by

I've just got copies of my last 2 scan reports,going back 6 months,  by simply asking the oncologist. She printed them off while I was there at my clinic appointment.

I also always get copies sent to me of the oncologist's letters to my GP, which summarise what was discussed at the appointments..

Hope that helps,

Sue x

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jaguar41
Posted by

Hi Sue

Thank you for your info, it makes me realise that my husbands team have never been very forthcoming with my requests to see the scan or reports, all we have ever been told is firstly the pazo had slightly shrank the tumours and stopped it spreading and further many scans just saying it was stable!! 

I think we were asked if we wanted copies of letters from his cancer specialist to his doctor and we said yes as I recall receiving one but no further ones!! 

It makes my husband feel, and has done for the last 5 years, that they aren’t telling him everything or they are using him as a guinea pig.

I think the next step is to talk to his GP, find out what the last report disclosed and go from there. 

Thank you for your help xx 

Ann

Jaguar41
Posted by

Thank you for taking the time to respond and your comments. I think the next step is to see his Doctor and find out what the reports have said and possibly buy copies and go from there.

Hoping you have many more years to spend with your family x

buttercup01
Posted by

Hi

  • I thought hospital consultants were obliged to give patients a copy of letter to the GP- I've always had them, whichever surgeon's done an op ( urology and gynae)  and the oncologist has done the same for the past 10 years+
  • You definitely need to get onto your GP
  • Sorry I can't get rid of bullet points !
Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.