News I didn't want to hear

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!

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

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