News I didn't want to hear

NanoSecond

gatorbob said:

C-met

Google XL184. Developed by Xlisis/Bristol-Myers.This drug is available on line,not in trials.

XL184

XL184 is now know as Cabozantinib or Cometriq.

angec

Suekub said:

In tears!

On waking up this morning and reading all your kind messages has me in tears. I still have not yet told anybody and my daughter has now headed off to school oblivious to it all. I do tend to bottle things up a lot and try to continue with life as normal, but not so normal to allow me to plan a holiday, enjoy a meal out with friends without feeling sorry for myself. Christmas is going to be tough, while my 2 sisters are enjoying their new grand babies (3 new ones born this year most recent one this past Saturday) I just can't get past the thought that this is something I may never have. One of my very good friends (who incidentally also lost her husband to leukaemia 5 years ago) became a grandmother for the 2nd time yesterday afternoon whilst I was receiving my bad news.

thanks for all your messages I just need some more time to process everything, give myself a swift kick in the rear end and get on with it.

Angec, I know I was on Nexavar for 12 months during the SORCE trial which I started within 3 months of my nephrectomy and I did start on 800mg of Votrient but raised  liver enzymes reduced that to 400 which I continued until yesterday with minimal side effects. What scares me most is that the pancreatic and spleen lesions have appeared so quickly, last scan in August revealed nothing on either of these organs.

The study I will be joining is Cabozantinib vs everolimus, unfortunately nothing using nivolumab is available. Anyone else on this? I would consider HDIL 2 but this is not available in Australia but I did mention this to my oncologist yesterday and she will investigate this for me. I am going to also post on Smart Patients to ask for advice from any the other knowledgable members over there for options.

Thanks again, Sue.

 

 

Sue, if you can get the Cabo

Sue, if you can get the Cabo that would be good! Did they mention Inlyta at all? Just wondering.  I know there will be others celebrating births, marriages, graduations and just going about life.  It all doesn't seem fair! But just maybe you will see your daughter get married and have children.  We don't know what can happen! Look at Fox for example.  He had mets all over and was told there was nothing that can be done for him. Well, he kept looking, and finally found the Nivolumab trial. From there he went to IL-2 (which we hope to hear he was cured), so the same can hold true for you, Sue.  You have to admit that it is possible! So, let's from here on out, after you kick yourself in the pants (ha), let's try to be positive. Let's take one day at a time and live fully on that day!  For we don't know what tomorrow can bring!  Tomorrow can bring a cure!  

You absolutely need to give your brain time away from thinking about cancer! You need to go out with friends, go to the movies and live your life!  We are with you and and intend to fight right along side you! You can do this!   My bet is on you!

elpasorudy

Sending you positive vibes

Sue,

I was sorry to hear about your bad news. But you do have options for treatment, and that is good. Will keep you in my thoughts and prayers: May the sun
bring you new energy by day.  May the moon  softly restore you by night.  May the rain  wash away your worries.  May the breeze  blow new strength into your being.  May you walk  gently  through the world and know its beauty all the days of your life.

Eims

Sue,  I am so sorry to hear

Sue,  I am so sorry to hear your news.  You are in my thoughts and prayers.  I know its hard but try to stay positive and strong.  Of course you are allowed have down days and that is completely natural but you are one tough cookie to get this far and you will get soooooooooo much further....I just know it....take some time for you too x

Eskimo lily

Eims said:

Sue,  I am so sorry to hear

Sue,  I am so sorry to hear your news.  You are in my thoughts and prayers.  I know its hard but try to stay positive and strong.  Of course you are allowed have down days and that is completely natural but you are one tough cookie to get this far and you will get soooooooooo much further....I just know it....take some time for you too x

Hi Sue, I'm so sorry to hear

Hi Sue, I'm so sorry to hear about your news...What Ange says is true, there are so many new treatment options out there and some people have just been lucky to have found the right drug for them the first time around. But everyone is different, everyone responds to treatments differently...maybe the second drug you try will be the right one for you.

Mom has been on Votrient for just over 3 months and we found it's metastasiszed to her vulva, which is extremeltey rare. The gyn at MSKCC said she's only seen 1 case of a met there in 10 years. We were both devastated and cried our eyes out but we're ready to battle this with the next treatment choice out there. 

I'll actually be traveling to Oz next week. Is there anything you want me to bring you from the states?? Anything your daughter would like? Specific lollies?? If I could bring you treatment options I'd stick them all in my suitecase for you! 

Suekub

Eskimo lily said:

Hi Sue, I'm so sorry to hear

Hi Sue, I'm so sorry to hear about your news...What Ange says is true, there are so many new treatment options out there and some people have just been lucky to have found the right drug for them the first time around. But everyone is different, everyone responds to treatments differently...maybe the second drug you try will be the right one for you.

Mom has been on Votrient for just over 3 months and we found it's metastasiszed to her vulva, which is extremeltey rare. The gyn at MSKCC said she's only seen 1 case of a met there in 10 years. We were both devastated and cried our eyes out but we're ready to battle this with the next treatment choice out there. 

I'll actually be traveling to Oz next week. Is there anything you want me to bring you from the states?? Anything your daughter would like? Specific lollies?? If I could bring you treatment options I'd stick them all in my suitecase for you! 

How nice of you.....

We have been to the US many times as my brother currently lives in Santa Fe NM (prior to moving there he lived in San Francisco for many years) and your offer is much appreciated. I can't think of anything but I always love shopping when I visit your country and love checking out the stores and outlet centres of brands that aren't available here.

Where in Australia will you be visiting? I am in Sydney, but I have been given the opportunity to travel to the Whitsundays on the Barrier Reef next week, very last minute and much needed. So Monday morning I will be on a flight and by lunch time may just be sitting by the pool enjoying the sun.

Every on the this board has been too kind and I appreciate all the kind thoughts and wishes. My initial shock has worn off and I am a little more rational now, just need to note down loads of questions for my next oncologist visit. My oncologist is the chief investigator of the study I may be included in but I need to ask about consequences of futures treatment and possible exclusions that may happen. So much stuff to think about....

Sorry to hear about your Mum.

Sue

 

Suekub

Suekub said:

In tears!

On waking up this morning and reading all your kind messages has me in tears. I still have not yet told anybody and my daughter has now headed off to school oblivious to it all. I do tend to bottle things up a lot and try to continue with life as normal, but not so normal to allow me to plan a holiday, enjoy a meal out with friends without feeling sorry for myself. Christmas is going to be tough, while my 2 sisters are enjoying their new grand babies (3 new ones born this year most recent one this past Saturday) I just can't get past the thought that this is something I may never have. One of my very good friends (who incidentally also lost her husband to leukaemia 5 years ago) became a grandmother for the 2nd time yesterday afternoon whilst I was receiving my bad news.

thanks for all your messages I just need some more time to process everything, give myself a swift kick in the rear end and get on with it.

Angec, I know I was on Nexavar for 12 months during the SORCE trial which I started within 3 months of my nephrectomy and I did start on 800mg of Votrient but raised  liver enzymes reduced that to 400 which I continued until yesterday with minimal side effects. What scares me most is that the pancreatic and spleen lesions have appeared so quickly, last scan in August revealed nothing on either of these organs.

The study I will be joining is Cabozantinib vs everolimus, unfortunately nothing using nivolumab is available. Anyone else on this? I would consider HDIL 2 but this is not available in Australia but I did mention this to my oncologist yesterday and she will investigate this for me. I am going to also post on Smart Patients to ask for advice from any the other knowledgable members over there for options.

Thanks again, Sue.

 

 

New treatment

Today I received the news that I have been randomised to the Afinitor arm of the Meteor study (not sure if I drew the short straw). Took the 1st pill this afternoon so the waiting game for side effects and whether it has any effect on slowing the growth of exisitng lesions and stopping any new ones.

I really don't know what other options will be available if this drug fails.....

 

Jojo61

Suekub said:

New treatment

Today I received the news that I have been randomised to the Afinitor arm of the Meteor study (not sure if I drew the short straw). Took the 1st pill this afternoon so the waiting game for side effects and whether it has any effect on slowing the growth of exisitng lesions and stopping any new ones.

I really don't know what other options will be available if this drug fails.....

 

Hi Sue,
Thanks for posting. I

Hi Sue,

Thanks for posting. I have been thinking about you. I pray that this drug is the solution....then you won't have to worry about other options.

May your results be optimal, and your side effects few.

God bless.

 

Jojo