Pazopanib

I had my kidney out 5 years ago and have been fine.  October last year I had a fall and broke my hip so was taken into hospital.  Whilst they were operating they noticed a mass in my other hip, I was sent for scans over Xmas and early Jan they called me in to tell me that there was cancer in my left hip and my right pelvis.  Apparently these areas has shown up on my scans for the last few years but nothing was mentioned to me.   I was taken into hospital within 2 weeks for a hip replacement, which confirmed that It was cancer.  They have now passed me over to the Oncologist who phoned me last week to start me on Pazopanib this was a phone consultation and just told it was cancer in my pelvis and this is the treatment I needed .  My head is all over the place at the moment as the side effects sounds really bad, and living alone I feel really afraid.  I have not signed the paperwork yet as had a lot going on the past week, I just dont know what I am doing.  If this virus were not around and in lockdown my daughter would have come home and gone to see the consultant with me.  Sorry for the long post 

  • Sue, yes I’d been told about that and if that was the case surgery would be out of the question. Strangely I had already said that but Surgeon still wants to see me, so I will have to go. I don’t know if you have heard of Wilko Johnson, he was the guitarist in Dr. Feelgood. He had a massive tumour, most of everything else removed about 7 years ago, and he is still here, and still performing. He also played Ser ilyn Payne, in Game of Thrones. If you google him his kidney cancer journey is unreal. None of the medical people I have spoken to have heard of him which I find weird.

    Ian

    Ian436
  • Obviously not Games of Thrones fans, nor of Dr Feelgood

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Good morning ,

    I read you post yesterday but did not respond as I was not sure what I would do in your situation and wanted to think about it.  One thing that happened to me when I was diagnosed with spread two years after my operation was that my urologist told me that I had terminal cancer.  When my oncologist heard this he was really angry as so far as he was concerned I was only terminal once all the treatments had been used and failed.  Whilst this was bad on the part of my urologist the medications were comparatively new and he was not up to date in his knowledge of treatment outcomes.

    My point is that it is impossible for any specialist to be fully up to date with the advances made in the various treatments.  I agree it would be best if the oncologist and the surgeon got together and worked out which would be the best but failing this you might have to try to get the information to decide for yourself.  Even if they did come up with a recommendation you would have to weigh up which of the outcomes was the one which you could live with, not necessarily just the one which helped you live.

    Whilst the doctors try to be positive one of the things I try to think about is what if it doesn't work.  If I take one lot of tablets I can stop and try another, if I have an operation it is not reversible but given the potential complications would I still be able to try the tablets.  I would also be asking how long would I be able to wait in practical terms before an operation was not possible?  By this I mean that if treatment was not working and the mets were continuing to grow is there a point where they would become too big to make an operation feasible.

    I would certainly be asking both the surgeon and the oncologist about best and worst case scenarios.

    I hope that my musings have been of some benefit but I didn't want to go without answering your post in some way.  I hope that your meetings go well and good luck with your decision.

    All the best,

    Gragon 

  • 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.
  • Gragon, hi, that is good advice, certainly anything I’ve been told or read makes it look like an operation is a pretty drastic measure. The op takes about 9 hours and the likely side effects look terrible. With tablets I just keep taking them, there are side effects but hopefully not too bad. Then there is the possibility of something new coming along which would be better and without side effects. I will listen to what a Surgeon says, but to be truthful at this point I don’t think I would want surgery. I will let everyone know what happens at consultation.

    Ian

    Ian436
  • I’ve just returned from seeing Pancreatic Surgeon. I should not have been to see him at all. A but of a muddle, if oncology team said to remove my pancreas, he would, but it would be a last resort when all other options had failed. So the upshot is I will have to wait for the result of my next CT scan to see whether it’s watch and wait, or targeted therapy with Pazopanib, or whatever. I have been to 3 different hospitals, and it appears communication is a bit hit and miss. Hopefully things go smoother in the future.

    Ian

    Ian436
  • Sorry youve had the runaround. Glad the pancreatic surgeon said removing your pancreas would be a last resort - sensible fella.

    Good luck with your next CT scan, whenever that is.

    Sue

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Thanks Sue, I pretty much knew it was a non starter, from everything I’ve read online, and been told by other departments at other hospitals. He was a really nice guy, he even checked my endoscopy and confirmed I had 3 times the normal amount of fentanyl, he says it sometimes doesn’t work for everyone.

    Ian

    Ian436
  • Good morning Ian,

    It's good to hear that you have had a bit of clarity from someone and are not going to have to undergo surgery.  I'm glad to hear that the mix up resulted in you being able to get a consultation but it is a reminder that it is important for you to push for your appointments, especially if several hospitals are involved.  You are obviously aware that they often fail to talk to each other to advise what they think should happen next and you might need to make sure that you don't slip between the cracks.

    I only deal with one hospital but still have to contact them fairly regularly.  Their favourite one is to send me a date for my CT scan after my appointment with my oncologist.  As I am on a trial my treatment is determined by my CT scan results so this can't happen but still it does.

    I can't remember if you said how soon your next CT scan is?  Sorry if you have said already but please let us know how you get on.

     Gragon

  • Hi Gragon, no date for my next CT scan yet, my appointment with oncologist is 23rd July. If I don’t get word today or tomorrow I will phone and try and gee them up.

    Ian

    Ian436