New to this - Rare Kidney Cancer

Hi, I'm not sure what to say, but here goes.....

I'm 41 & have 2 daughters aged 3 & 1. I was diagnosed a year ago with a rare papillary kidney cancer which had already spread to my lung, there is no cure. I was put on an oral chemo called sunitinib, which recently stopped working & the cancer on the lung had spread. I'm now a week in to another oral chemo called axitinib, there is less chance of this one working at all, but I'm hoping it will help even if its just a couple of months, that's still a couple of months added onto my life.....right!

Taking the meds is a struggle, they make me feel so tired & ill, but I have to continue for my girls. In fact I only cry for my girls, they don't deserve this, but at the same time they are my saving grace. They make me get up in the morning & cherish every moment I have with them however much of a struggle life is I just have to look at their faces to cheer me up.

I'm currently taking each day as it comes & hoping the meds are working as the next line of attack doesn't sound very favourable, but that's another story.

I think I'll leave it there for now, thanks for listening, or reading ;-) 

  • Hi, I am so sorry to hear of the sad situation that you find yourself in.  I can only imagine how distraught you must feel.   Cancer is a rotten disease that leaves us helpless - but when you have children that are so small it must make your resolve to fight even more important.

    Please come and talk to us, let us know how your treatment is going and know that you are being thought of.  With my best wishes to you and your girls.

  • Hi there loop, welcome to the forum, but oh so sorry for why you are here. I can't even imagine how hard it must be for you when you think of leaving your two dear little children. Having cancer in and of itself is so hard, but leaving young kids behind goes beyond hard. Myheart goes out to you. I wish there was something I could say, but there isn't anything that can be said. I sincerely hope that your treatment gives you as much time as possible to be with your little ones for as long as possible. Since they are so little. would it be possible for you to make a video of you telling them about you and how much you so wished you wanted to get well to stay with them. I'm sure their father will tell them that, but how nice for them to see you and hear those words directly from you. Just a suggestion and perhaps you're not feeling up to that, but I thought I would mention it in case it would be a possibility. Again, I'm so sorry for what you are going through. Come back to the forum and tell us how you are getting along.

    Sending you hugs for you and your two little ones.

    Lorraine

  • Thank you Pauline, it has certainly helped writing my post & having a couple of very thoughtful responses. 

    I'll keep you postedvon how thingsgo x

  • Thank you Lorraine for your kind words, I certainly have thought about doing a video for my girls, but can't keep it together enough at the moment. Its definitely something I need to do for them & I hope I'll find the strength soon to do it for them.

    Thank you again for your support, it means a lot. I'll keep you posted on my treatment. x

  • Well today I have received some good news!! My new treatment is currently working, the cancer hasn't spread anymore & in parts it has shrunk, so fingers crossed it'll keep doing its thing for as long as possible.

    Lorraine, I have managed to do a few short video clips for the girls one each for their birthdays and one for Xmas, its a start & hopefully I can manage a longer more personal one soon. I think I need to write them a letter first & progress from there.

    I hope Lorraine & Pauline you managed to enjoy Xmas xx

  • This all feels like a dream! I have just been diagnosed with stage 4 kidney cancer that has spread to my lungs... I'm 43 have 2 boys (age 8 & 17) and is currently waiting for my appointment with the surgeon to have a kidney removed I've looked at your posts and appreciate any advice or help you have to offer. Tinx. X