Dear All,
I am new to the site and gosh am I so glad I have found it! The support I am getting from Julia & Rose is outstanding. I am just so touched as I thought I was alone in my fight for my husband's treatment. It is so nice to have someone to talk to who have been in this situation. (I must admit, I did feel like giving up as the medical jargon confused me) Believe me, don't let this put you off - I 'm sure that's why they do it, so you want bother them anymore - I'M EVEN MORE DETERMINED NOW!!!!!!!
In a nutshell - My husband has Kidney Cancer with Lung Mets and Adrenal met. He has just been taken off Sutent and now his only chance is Everolimus. His application has been put forward to the PTC and has been refused. Appeal here we come!!!! (Garry is 46)
I am going to fight not only for my husband but for the lovely people out there who need this treatment. It is so unfair.
Please feel free to contact me with any questions and I will feedback our experience with treatments Garry has had, and experiences. It's been a long journey, but positve and we have supported each other and this has made us stronger people.
Julia & Rose - You are absolutley magnificent and well done for setting this forum up
Keep positive lovely people
Tina xxxxxxxxxx
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Everolimus
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Everolimus
by TinaJ on Tue Mar 02, 2010 9:25 am
- TinaJ
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Re: Everolimus
by TinaJ on Sat Mar 13, 2010 8:42 am
WE HAVE DONE IT! WON FUNDING FOR EVEROLIMUS 
The best news we could of had, found out yesterday.
This just goes to show, never ever give up. When you first receive that letter declining funding DON'T GIVE UP! ASK FOR HELP, Without the help of Julia, Rose & Clive we would never of done this. Ask for help, they are BRILLIANT. I really can't say THANKYOU enough.
If anybody wants to know anything I am happy to share with you.
Julia has been at the end of the telephone and e-mail every step of the way. The dedication is unbelievable, I am speechless.
A VERY HAPPY GARRY & TINA & Family xxx
A huge THANK YOU to you ALL
I will keep updating on this site with reference to Everolimus and how things are going etc
Please do contact me if I can help anybody and I will be more than happy to do so.
The best news we could of had, found out yesterday.
This just goes to show, never ever give up. When you first receive that letter declining funding DON'T GIVE UP! ASK FOR HELP, Without the help of Julia, Rose & Clive we would never of done this. Ask for help, they are BRILLIANT. I really can't say THANKYOU enough.
If anybody wants to know anything I am happy to share with you.
Julia has been at the end of the telephone and e-mail every step of the way. The dedication is unbelievable, I am speechless.
A VERY HAPPY GARRY & TINA & Family xxx
A huge THANK YOU to you ALL
I will keep updating on this site with reference to Everolimus and how things are going etc
Please do contact me if I can help anybody and I will be more than happy to do so.
- TinaJ
- Posts: 34
- Joined: Wed Feb 24, 2010 6:41 pm
- Region: Worcestershire
- Appear on map: yes
- First part of postcode: WR11
- Your status: Carer
- Gender: Female
Re: Everolimus
by Jackie on Sat Mar 13, 2010 11:21 pm
So pleased for you as I say never give up the fight. xxx
- Jackie
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Re: Everolimus
by TinaJ on Sun Mar 14, 2010 8:21 pm
Hi Jackie
You are a true inspiration for anybody. Look at how hard you fought for Sutent and won. Well done, love & hugs to you, Tina xx
You are a true inspiration for anybody. Look at how hard you fought for Sutent and won. Well done, love & hugs to you, Tina xx
- TinaJ
- Posts: 34
- Joined: Wed Feb 24, 2010 6:41 pm
- Region: Worcestershire
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Re: Everolimus
by Maria on Mon Mar 15, 2010 12:42 am
Well done, Tina. You inspire all of us on this journey.
- Maria
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Re: Everolimus
by TinaJ on Mon Mar 22, 2010 9:26 am
Hello Friends
Tomorrow is the day we find out if Garry can start Everolimus. We have got an appointment in the morning with the consultant. I think I am worrying for Garry. He had blood tests last week with his GP as he was feeling unwell and they came back with lots of things going on! calcium and potassium etc. He has not been on any treatment for about ten weeks now.
Has anyone ever been in this situation?
I will update you all tomorrow on our return
A very anxious Tina XX
Tomorrow is the day we find out if Garry can start Everolimus. We have got an appointment in the morning with the consultant. I think I am worrying for Garry. He had blood tests last week with his GP as he was feeling unwell and they came back with lots of things going on! calcium and potassium etc. He has not been on any treatment for about ten weeks now.
Has anyone ever been in this situation?
I will update you all tomorrow on our return
A very anxious Tina XX
- TinaJ
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Re: Everolimus
by Rose Woodward on Mon Mar 22, 2010 11:00 pm
Hi Tina,
Sometimes if there bone mets present, then the calcuim that is normally in the bone is forced out into the blood, there is a drug called Zometa which tries to reverse the process , I wonder if this is happening with Garry.
Do let us know how things went today, if Zometa is prescribed then come back on let us know as there are a few precautions you can take to prevent side effects.
Hang in there - love to both of you
Rose W
Sometimes if there bone mets present, then the calcuim that is normally in the bone is forced out into the blood, there is a drug called Zometa which tries to reverse the process , I wonder if this is happening with Garry.
Do let us know how things went today, if Zometa is prescribed then come back on let us know as there are a few precautions you can take to prevent side effects.
Hang in there - love to both of you
Rose W
- Rose Woodward
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Re: Everolimus
by TinaJ on Sat Mar 27, 2010 6:32 am
Hi Rose
Thankyou very much for your advice. Garry is now out of hospital and has got to go for a blood test on Monday and then back to see the consultant on Tuesday to see if he is fit enough to go on Everolimus. The main concern was high calcium, he is due to have a full body scan but we do not have an appointment come through as yet. I find it hard work trying to get straight forward answers Rose. The adrenal met is giving him alot of pain (something I am going to discuss on Tuesday! again). I just pray they will let him have the treatment.
Will keep you posted.
Love Tina X
Thankyou very much for your advice. Garry is now out of hospital and has got to go for a blood test on Monday and then back to see the consultant on Tuesday to see if he is fit enough to go on Everolimus. The main concern was high calcium, he is due to have a full body scan but we do not have an appointment come through as yet. I find it hard work trying to get straight forward answers Rose. The adrenal met is giving him alot of pain (something I am going to discuss on Tuesday! again). I just pray they will let him have the treatment.
Will keep you posted.
Love Tina X
- TinaJ
- Posts: 34
- Joined: Wed Feb 24, 2010 6:41 pm
- Region: Worcestershire
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Re: Everolimus
by Rose Woodward on Sun Mar 28, 2010 4:12 pm
Hi Tina,
RFA ( radio frequency Ablation) or surgical removal could be an option on that Adrenal met if it is putting the other treatment on hold ? - if you have a look at the forum posts and search for Adrenal,I think Sandy S put some posts up here about her experience with having RFA on her adrenal .
You are both being so strong through all this - in the USA they call cancer fighters like Garry - "warriors" - fighting the "beast" every inch of the way.
love from Rose xx
RFA ( radio frequency Ablation) or surgical removal could be an option on that Adrenal met if it is putting the other treatment on hold ? - if you have a look at the forum posts and search for Adrenal,I think Sandy S put some posts up here about her experience with having RFA on her adrenal .
You are both being so strong through all this - in the USA they call cancer fighters like Garry - "warriors" - fighting the "beast" every inch of the way.
love from Rose xx
- Rose Woodward
- Posts: 271
- Joined: Mon Dec 01, 2008 1:31 am
- Location: Porthtowan. Nr Truro Cornwall
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- Your status: KC Survivor
- Gender: Female
Re: Everolimus
by TinaJ on Tue Mar 30, 2010 7:09 am
Thank you Rose, I will ask about it today. Fingers and everything crossed the bloods are OK and Garry can come home with the Everolimus. It is at the hospital pharmacy waiting!
Praying, praying and praying.
Will update later today. Got to be there for 11.30.
Tina X
Praying, praying and praying.
Will update later today. Got to be there for 11.30.
Tina X
- TinaJ
- Posts: 34
- Joined: Wed Feb 24, 2010 6:41 pm
- Region: Worcestershire
- Appear on map: yes
- First part of postcode: WR11
- Your status: Carer
- Gender: Female
22 posts • Page 1 of 3 • 1, 2, 3
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