Lucky streak didn't extend to me :-(
 

Well unfortunately last week's streak of good results didn't extend to me. My latest scans show progression in my lungs. This is despite me feeling fantastic, my skin lesion gone and my tumour markers normal. I was convinced I was going to get a NED report today so I am completely shattered to have progression as a result.

I am trying to pick myself up and keep going as without these scans I wouldn't know the state of the disease. I took my girls to see the musical Annie - luckily it was dark as I cried throughout at poor orphan Annie with no Mum and Dad. I am so worried for my kids. I have been actively envisioning attending my 5 year old son's wedding and it seemed so achievable - now I have to get to seeing him start school next year.

I know I am not out of options but this has me floored as my results after 4 1/2 weeks on the treatment were the best I'd seen with substantial reduction and many tumours gone. I am not quite back to the worst i've been but progression none the less.
So the plan is a PET (not standard here in Australia) on Thursday to see if the spots are actually warm, then to see if we can biopsy something to see what we are dealing with (last biopsy failed to get tissue). We are looking into TDM1 trial but currently I won't qualify as all tumours are sub2cm.
There are no pertuzamab trials here beyond first line.
Shattered...

Re: Lucky streak didn't extend to me :-(
 

Oh Amanda that really sucks! I am so sorry you got progression instead of NED. Hopefully the pet will give some more information. Have a good cry and eat chocolate, then you give it what for! Stupid cancer.

Dawn

Re: Lucky streak didn't extend to me :-(
 

Dear Amanda, so sorry to read your post. I think though that the fact that your tumour markers haven't gone up, and the skin lesion has disappeared is a good sign. And I think the PET will hopefully give more insight (I'm also waiting on results of some PET/PT scans here in Sydney about my lung mets - yes, definitely not common to have PET/CT).

You do have a lot more options yet, so keep thinking about your son's wedding in about 25 years!! I'm sure you check the trials website, but just in case www.australiancancertrials.gov.au

Marie x

Re: Lucky streak didn't extend to me :-(
 

Amanda; sorry to hear about your test results. Take the good news that your tumor marker have not gone up and ride that wave into your PET scan. Keep fighting you still have a long journey ahead and we will all be there with you.
Suzanne

Re: Lucky streak didn't extend to me :-(
 

Hi Amanda
So sorry this was not the news you hoped for.it sounds like the trial situation is the same as here in England however this may change as more information becomes available about its efficacy.
Breast cancer is a really hard journey and my heart goes out to you especially as you have the added worry of 3 young children. There are many treatments still available yet and each day more research leading to more options.
Hugs
Ellie

Re: Lucky streak didn't extend to me :-(
 

Amanda,

Sorry that you just received news that knocked you for a loop. I hope the PET shows those spots are cold. Really, really, really cold!

Re: Lucky streak didn't extend to me :-(
 

Amanda....sorry to read about this latest setbackp, but focus ahead, on the future, your sons wedding etc....some of us have to endure more hurdles on this journey than others....may this be one you can quickly resolve and put you one step closer to reuniting with NED....stay positive, there are many options in your arsenal.

Re: Lucky streak didn't extend to me :-(
 

Oh, Amanda, I'm so sorry. That's disappointing.

It's amazing how often our news is mixed. It's easy to focus on things that fall short, and not celebrate the good stuff. I think that's human nature.

I know all about hoping for NED and not getting there. It feels crappy. I hated finding out I was on the downside again. But then I realized, as you said, that I would never have known if not for the scans, because physically I feel great. So all I have to do is line up my perception of well being and health with the reality of those few rogue cells.

One day at a time, my friend. Nothing bad is happening right now--at least nothing beyond your ability to cope. Cancer is a sneaky, devious, cunning foe. But you have it in your power to prevent it from ruining the life you have now, today.

Re: Lucky streak didn't extend to me :-(
 

Hi Amanda ! Sorry to hear about the progression... If the tumor marker is normal my guess is the progression is not significant. I hope it is just a small bump on your ride with NED. Did you already talk with your doctor what he wants to do next? Maybe it is time herceptin chime in with tykerb. I also have a young kid turning 6 next month and i cried many times worrying about her life without me. But like many others here have said, focus on the positive thoughts and continue envisioning seeing them grow up and yourself grow old ! Lots of love and hugs from California (())))

Re: Lucky streak didn't extend to me :-(
 

Hi, Amanda,
I am so sorry that you got this type of news. But how about you wait until you get the PET? Sometimes that changes the whole game. I will keep my fingers crossed for you, Amanda. You are such a dear. I just have the feeling that it's a bump in the road and I envision you beating this.
Love
Karen

Re: Lucky streak didn't extend to me :-(
 

Prayers...

Re: Lucky streak didn't extend to me :-(
 

Hi Amanda,
So sorry to hear your news, but let's hope it's just another bump in a long road. Still many options available.
Wishing you strength..... Pam

Re: Lucky streak didn't extend to me :-(
 

Hi Amanda,

I echo what the others here have said - wait for the PET, talk to your onc., breathe deeply - you are not out of options.

Sending prayers from Canada to a fellow commonwealther.

all the best
caya

P.S. eating some dark chocolate couldn't hurt...

Re: Lucky streak didn't extend to me :-(
 

So sorry for this news , but lots of wisdom here, wait on PET, adding herc to tyk has had good results for many.
Over here Gen. soon will give final EMILIA data to FDA , ( this month ? ), approval by end of yr or sooner , we have good hope for that now.
I dont know how quickly Austr. follows US Approval... but comp use for those who have progressed on taxane, tyk. seems more likely to happen here as ap[pr comes closer.
We at Our Her2Cancer Struggle will not rest until This FDA is held accountable for mis-handling t dm-1 and pert. God Bless

Re: Lucky streak didn't extend to me :-(
 

Amanda,
I'm so sorry you have had this worry added to your heart.
Please, please don't let this news keep you in that "dark place".

Try to force your mind back to envisioning that wedding and the stunningly beautiful mother of the groom...cancer-free, and loving life! Our cure is just around the bend my friend. We all have to stay strong, and keep fighting until then.
You can do it.
You will do it.
I know it in my heart.
There's something about your posts that tells me this stupid cancer doesn't stand a chance...You'll never let it take your kids' Mum away from them.

So, Dear Amanda, hopefully, the PET will allay some of your fears. But barring that...you have good doctors, and lots of great treatment combos out there. If they don't get you back to NED right away, at the very least, they'll keep you feeling well until that cure is ours.

Until then...avoid sappy musicals. (I watched Annie with my two young nieces recently...and it had the same effect on me. The only highlight was the song "Tomorow". Those lyrics lifted my spirits quite a bit.)

Enjoy feeling well.
And rest easy, knowing all of us here are praying for you, sending warm thoughts, and knowing in our hearts, that our cure is on the way.

Love, and a big hug,
Denise

Re: Lucky streak didn't extend to me :-(
 

Amanda~
I know your disappointed about not getting a NED scan, but you did get some positive news - resolved skin mets & TM's wnl- and the results are mixed, and not definitive progression. Hold on to that. My greatest hope for you is that nothing lights up on your PET scan.
Keep the Faith and please keep us posted~

Jessica

Re: Lucky streak didn't extend to me :-(
 

Amanda I'm sorry the news was'nt better but do hope the PET brings better news!

Re: Lucky streak didn't extend to me :-(
 

Try and focus on what others are saying, which is so true. There are many options and some folks do (unfortunately) have to endure more hurdles- and they do. Stay strong and keep your focus "ahead".

Best,
Karen Z

Re: Lucky streak didn't extend to me :-(
 

My heart goes out to you.

I hate scan times. They don't correlate to how I feel and I don't want bad news when I feel good. I really want to put my head in the sand at times. But, I can't give up and you can't either. There are still lots of things that can be done and the next one will get you to your son's wedding.

They really are doing amazing work now especially for HER2. Just hang in there..

Re: Lucky streak didn't extend to me :-(
 

Dear Amanda

I know you are disappointed but wait and see what the PET scan says for certainty. What you have been on worked at least on some things so if you can't biopsy or get in a trial, add something to what you are already on? It is difficult from your signature to see if you are still on Herceptin - if not, ask to add that back in. Maybe it works on the lungs and everything else responds to what you're already on.

Sometimes we all might think if we have mets in different parts of the body (or several tumors in one part of the body) that all of those tumors are exactly the same as each other. But remember, they are cancer and cancer is a mutation and each may be a small nuance different from each other and mutating in different ways. Perhaps the lung mets hate Herceptin and respond but the skin could care less so.... If your lungs did well on Herceptin, add it back on top and see if these synergies do you some good since you have visually seen that what you are on DID do you some good. I am just thinking out loud here of course but it would be a shame to make a major change (without a nifty trial) when you got some good from this combo.

Love and hugs from me in NJ