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Votrient failing, what next?

Greglk
Posts: 1
Joined: Jun 2014

Hello, I don't think I've posted here before.  Have been at stage 4 at least a year and a half.  mets and lesions are mostly in my spleen, spine, pelvis, and lungs.  Votrient was great for 6 month, now its effectiveness is waning.  Last scan showed worse spleen and lung activity.  My doctor thinks it's time to switch meds, as I am moving to another state, it will be with a new doctor.  What is next?  This is so discouraging, is it time for Ilk-2 or a clinical trial?  I know I won't live forever, but a couple more years would be nice.  Even with my lower back pain, which is intolerable.  I send a big F You to this accursed disease.  I'm 48 for God's sake.

Sorry but I have to rant somewhere.  Interested in what others have done after first line failure.  Reading this board has revealed truly strong, compassionate, people. I marvel at you all.  Thanks,

Greg

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Greg, 

Sorry to hear that Votrient has failed you after just six months, no time at all really. It's odd how it works for years for some people and so much less for others. I have been on Votrient for a year now, last month was the first time with no growth at all. I am lined up for Afinitor next but I am hoping my next months scan shows Votrient is still doing a good job.

I have no information about any trials but just wanted to wish you all the best. I am sure being in the US you will have no problem finding the right treatment for you. It is so tough particularly at a young age, but strength comes with youth, never give up hope and just keep fighting. We all have to have a rant from time to time it helps:)

 

Djinnie x

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

Hello Greg~! Sorry for what you are going through. Although I have no information on these treatments, others will I am sure.

But I want to offer you my care and compassions during this challenging time.

Do you already have a good support system now?

Keep us informed. We'll walk this journey along side you, if you choose.

Warmly, Jan

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

As my Mrs is always telling me if this drug doesnt work - try another one. Ask about Il 2 you seem young enough, but its no picnic and doesnt always work.  Its seems the only thing predicatable about stage 4 is its unpredictability. Which is a bit of a bugger. Actually cancer is a bit of a bugger really isnt it?

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Greg,

 

Welcome!

This disease is horrible, no doubt. What state are you moving to? Perhaps one of our members will be able to recommend a team for you in your new state.

All the best to you, and now that you have introduced yourself, please feel free to keep in touch....either to vent, question, celebrate, or anything at all.

Hugs

Jojo

 

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Greg,

     If you only come to this sight to rant it is ok.  You are with great company, and a fantastic support group! I am also stage 4, a bit older than you, and have had right kidney, right lower lung, and tumor in brain removed and I am still here! Started this God awful journey in 2011 and just at the point now to have scans every 4 months.  Please don't be a stranger, let us know what is going on with you, if nothing else we are here to listen and offer strength to you!

                                                    Prayers for good health!

                                                    Brenda

angelsnls
Posts: 67
Joined: Nov 2014

Hi Greg I to have been on votrient for six months and my latest scan showed lung mets growing slightly and a couple of new ones appeared, my oncologist has advised to stay on it till next scan to see what happens as I had shrinkage at first scan. I have found out that my stomach medication (omeprazole) alters the stomach lining and therefore hinders the votrient working, (i clarified this with local pharmacist) needless to say I have now stopped the omeprazole so I am hoping next set of scans show shrinkage. If it doesn't then my oncologist did mention everolimus as next treatment to try. Oh I live in the Shetland Islands in northern Scotland. 

Lots of love x

mrou50
Posts: 389
Joined: Mar 2013

Greg sorry to hear Votrient is not working, I have been on it for a week so I have no idea if it is working or not.  What I do know is I feel sick all the time and I get really bad headaches.  As for your ranting you can rant as much as you want, just know you are not alone.  What ever new therapy you choose good luck with it and stay strong.

 

 

Mark

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