Off the Bolero Trial
 

Well - it looks like I got 7 months out of everolimus. My last scan showed progression in my lungs - new spots and growth of existing spots.

I am due to start Tykerb and Xeloda next week. Had a lung biopsy yesterday as we could finally reach one - they are still relatively small but numerous. My lymph node and skin met remain stable - just my lungs going crazy.

I am feeling pretty bummed. I have made major lifestyle changes, coped really well with treatments, still mothered my children, meditate and try to enjoy life but this cancer just keeps growing.

I saw my surgeon today - a wonderful man but brutally honest with me. He said the speed at which the cancer spread while on treatment was not a good sign and that the likely course is treatments becoming progressively less effective until there is nothing left.

I find this so difficult to comprehend. I am still asymptomatic. I have three young children 5, 7 and 10 who need their mother. I have been struggling to keep the tears at bay today.

No one seems particularly hopeful regarding Tykerb and Xeloda - just a time buyer - well I guess they all are. My oncologist seems to be ticking the box so that I might qualify for the Th3resa trial.

Probably just my headspace tonight - usually I am so inspired by everyone on here and the hope that abounds but I went searching for threads on Xeloda and Tykerb side effects and noticed that some of them were a few years old and many posts from members no longer with us and struggled with that.

I am looking for wise words from those of you with experience. Any tips on Tykerb and Xeloda also very much appreciated.
Amanda x

Re: Off the Bolero Trial
 

Praying for you and your family. Did you by any chance ever get tested for a BRCA gene? If you're positive, you could try a Parp inhibitor. They sound promising.

Love,
Penny

Re: Off the Bolero Trial
 

Amanda
Many times the chemos have only been a "Patch" for me, to get me through until something that works better comes along...each one so far has given me time, and I am thankful for that....your list is still quite short, and I can think of several that might work well in your case...i found Eribulen (Halaven) worked well with Herceptin....I have always been on Herceptin with each chemo...even the metronomic chemo might be worth a try....look at some of the lists below our names, jot down the drugs and go see the oncologist and ASK what about this drug...etc.....they like a patient who is planning their future.....sometimes I think they are so busy they forget some of the possibilities or old standards....

Seems you have alot of drugs to try yet...one may be your miracle that gets you to NED.....ASK!!!!
Sending prayers and positive vibes to get you over this hurdle!

Re: Off the Bolero Trial
 

I'm far from knowledgeable but aren't you still on Herceptin? also what about TDM-1 which seems to be a great drug? also I read somewhere about radiation of metatastic sites, any discussion about this? maybe see some more doctors and see if you get some different answers. I agree with Sheila, you haven't done a lot of drugs yet.
big hugs and love
sarah

Re: Off the Bolero Trial
 

also maybe change your post title to looking for answers when chemos aren't working or something like that then you'll get answers from the pros.
big hug
sarah

Re: Off the Bolero Trial
 

Amanda I'm sorry this med did'nt work for you and as Sheila says there's still many out there to try to stay positive one of them will work well for you.

Re: Off the Bolero Trial
 

Hi,

Sorry you are off the Bolero trial. I guess I don't know much but I am surprised that your onc doesn't hold out much hope for Tykerb and Xeloda. I think that is a pretty hopeful combo.

There are hopeful, new drugs on the horizon....we just need them to get approved...but we know the names of them...TDM-1, Pertuzamab, Neratinib.......

Hang on. Saying a prayer for you for your encouragment.

Re: Off the Bolero Trial
 

Hi Amanda,
Of course it is disappointing (I know, I am the master of understatement) when a treatment stops working. And doubly discouraging when your doctor so starkly lays out the challenges before you.

However, don't lose sight of the fact that the list of options is quite extensive and even if some of them are only "buying time", it might be just the right amount of time for the right treatment for you to come along. The early Phase II trials of TDM1 showed spectacular results in a patient population that had a median of 7 prior therapies.

Also, remember that each cancer is unique - tykerb/xeloda may be a good one for you, don't give up on it before popping your first pill!

You just don't know what is around the corner. Keep the faith,
chris

Re: Off the Bolero Trial
 

Amanda,
You are in my prayers every single day! I'll add a bit about hoping Tykerb is your best treatment yet, tonight.

Remember...People don't cry because they're weak...they cry because they've been strong for too long...and need a little relief!

And, please listen to the wisdom of Chris and Sheila...you still have lots and lots of options waiting for you!

Denise

Re: Off the Bolero Trial
 

Amanda, I am sorry you are having a hard time. You are in my prayers along with your family. Sheila and Chris are as smart as they come. I do believe they know what they are talking about. I have been looking up to them for some time now!

Peace my Friend,

Nancy

Re: Off the Bolero Trial
 

Hi Amanda, so true what everyone is saying on this thread. It's true you still have lots more options yet - I'm also er/pr - (and of course her2+!) and Abraxane worked well for me. It's true what Sheila says about asking and putting forward suggestions. I know that information I learned from this site has benefited my discussions with the onc.

My onc is not one to be particularly effusive, but he came from SABC and was very excited by pertuzumab. We just need to get it approved here in Australia!

If you ever want to chat, send me a PM.

Cheers Marie x

Re: Off the Bolero Trial
 

Hi Amanda,
During the 8 years I have spent in Cancerland, I found that there is absolutely no way of telling who will run out of options fast and who won't. People who seem to have "slow" tumors that initially respond well to treatment may suddenly get very little mileage out of new combo's. People who can't seem to find the right drug suddenly return to NED status on their third or fourth try. It is a trial and error thing and I agree with others that there are exciting new options. You would do well to ask as many questions as you can think of and make a plan.

Like you said, you have three kids that need their Mom. So you'd better start thinking of possible treatments and discuss them with your onc. If needed, you can ask for second opinions. Or switch doctors. Or do whatever you feel you have to do to survive.

And ofcourse you are in tears today. This is a setback and it is scary. So I'm sending you a big, warm, virtual hug all the way from the Netherlands, Europe.

Love

Jacqueline

Re: Off the Bolero Trial
 

thank you all so much for your replies. I am in a much better headspace now and hearing from you all has helped me immensely.

Just to clarify - it was my surgeon not my oncologist who was talking like this and I did focus on the negatives - he also had some positive things to say about attitude and treatment advances but... Look I am not going to focus on that now.

My oncologist fortunately never talks prognosis and talks about managing the disease long term. She is very keen for me to get into a TDM1 trial - there is only Marianne and th3resa here - I qualify for neither currently. We didn't do Marianne as first line as I had seemed to progress on Taxol so we didn't want to risk being randomised into the taxol group. I have to try tykerb and xeloda to qualify for Th3resa - I just wish it had a pertuzamab arm. Anyway - we have also discussed Abraxane as our next likely option.

Who knows - maybe Tykerb and xeloda will hold things at bay for a considerable length of time? Dare I dream of NED?

I'm not giving up, I'll face what's ahead of me and for now I feel good and I have three beautiful children to love and care for and create happy memories for. So bring on the Tykerb and xeloda!
Amanda xx