Hi All, I am new to this forum. My husband was diagnosed a few months ago with inoperable Kidney Cancer which has spread to his Renal and both Lungs.
He was started on 50mg Stutent immediately and has been taking the drug for 4 months now.
The side effects in the forth month were so severe that there was very little quality of life.
The dose has now been reduced for the next cycle. My husband has gone from being an active healthy person to having a morning, afternoon and early to bed person and lost over 12kg in weight.
I am trying to stay positive but there is no quality of life at present for either of us and I am struggling with the weight of being everthing to everyone.
Is anyone else in the community using this drug and managing the side effects?
Help Please, BrisbaneLass
Thanks for your response, I found several message boards for other countries but none for Australia until I went into the Online community forum I am so pleased I found the forum.
I am pushing "water" as much as possible as my husband has never been one to drink much water but he got blood in the urine a few days ago and I think it worried him so much that he is now drinking water. I feed him frequently in the good days but the bad days he just has a piece of raisin toast and nothing more which is not good. How long did you perserve with Sutent before moving on to another drug? You say to stay as long as possible, was it the most effective drug for you as well?
I am seeing a councillor at the moment onece a month as I was so angry all the time about the cancer, the changes in our lives. We are working through the anger issues. We used to enjoy things together such holidays, dancing, walking the dogs has all stopped now. Are you able to live a relatively normal life on the drug that you are taking now and how long have you been on this journey?
It has been a horrid two weeks but is settling down a bit now so I thought I would post while I had a minute.
Noel has been in pain when ever he slept or rolled over on his left side it would wake him. It got so bad that our local doctor sent him for more xrays and found that his lung was full of fluid so off to the hospital to have his lung drained and then it collapsed so it has been a challenging couple of weeks with the hospital and then getting the lung to gradually stay inflated.
The Oncologist is not sure whay the lung filled with fluid but said that the fluid was not cancer related but seemed to be from an irritation. We are not sure what that means but now have to watch in caes this happens again.
Noel also has blood in the urnine again which is a worry - as you said Sutent is brutal. it is so difficult to watch Noel lose more weight and getting weaker, his energy level is really low.
I hope we can have a couple of good weeks in the next month but he spent the "two off sutent weeks" in hospital so that is not a good sign.
I hope you are doing ok and getting out and about. It is hard to believe you have been living with this for over 5 years, it is only just over 4 months for us and is already a struggle.
thanks Brisbane Lass
We have had another set back today, the Sutent is no longer working on Noels kidney cancer and he now has a permanent catheter in his lung which I drain every two days.
they have stopped Sutent and Noel starts Opdivo injections every two weeks starting this Friday and has now been told instead of a possible 2 to 10 years he has 6 months to 2 years.
It is a huge shock and devasting to all the famiy. Noel is seeing a dietician now but has not yet put any weight back on due to being so sick with the fluid in his lungs and the Sutent so their has been no quality of life in the last three months.
Have you tried this new Opdivo treatment or do you know anyone who has tried it?
I'm very sorry to hear things aren't going well with Noel.
I have just started on Opdivo as well. I had my first treatment with it on the 17th Nov. So far, so good as I haven't had any side effects - yet. My oncologist has said that because the Opdivo seems to work so well, it will probably become the new first line treatment instead of Sutent. Having said that, I know that it doesn't work for everyone.
I had a port put into my chest on Tuesday so I can have all the treatments done through that instead of poking my veins every two weeks.
I hope Noel gets some progress with it so that his life quality improves.
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