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

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

Good luck with your PET today Amanda, thinking of you.
Dawn

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

Thanks everyone.
I had my PET yesterday and while I don't have the full report I spoke with one of the radiologists last night (very good friend of mine). The lungs did light up and possibly a very small chest node.(5mm) comparison to my CT has not been done yet. Everywhere else is completely clear. He believes 4-5 are biopsy able though it will again be tough. None are close to the lung wall or get table via bronchoscope.
So, I am waiting today to hear from my oncologist snd expect I will attempt a needle biopsy again next week. I am very keen to get tissue as these lung mets have never responded in a way that anyone expected. I hope to God that they are not triple negative.

Thanks for all the input. I am thinking of discussing adding herceptin back in - I will need to fund either the tykerb or herceptin (tykerb will cost less but still more than $200 a day) as in Australia the government subsidies drugs not private insurance and this combination is not funded and given withdrawal of the FDA quest for this combo by GSK - unlikely to be for some time.

I also don't think I will qualify for the theresa trial as none of the tumors are 2cm.

Istill feel really good so I am going with that and trying to maintain the faith.

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

Thanks for keeping us updated, Amanda. So it's only in the lungs right now? The skin met and axilla node are clear? If so, it seems as though you and I may have something in common. My breast, skin, and axillary nodes responded completely to treatment, but the cancer still decided to take up residence in my liver, so I guess I had a mixed response to herceptin. Tykerb did nothing for me and I developed a severe allergic reaction to it. Have you been tested for brca? Platinum chemos seem to work the best on brca-positive patients.

When it was found in my liver, I had to wait a while for the her2 results and I also prayed it wasn't triple negative. From what I've read, the odds seem are that if it changes, it usually changes from negative to positive, so keep that faith of yours. God is good - mine was still positive. Yours is too.

They'll find the right cocktail for all of us, including you. But the rollercoaster ride stinks. Wish we could all get off of it.

- Penny

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

Amanda,
Always relaying your thoughts with grace.
I know you and your doctor will come up with the right combination for you. I am sorry you have the additional burden of governmental blocks. You are a very special woman and I see nothing but good for you.
Love
Karen

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

Dear Amanda i hope you will find light through this tunnel and I pray you will.

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

Hi Amanda, sending you big hugs, and a reminder that you have so many more options yet to explore.
Love Marie

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

Amanda, My thoughts and prayers are with you. I pray all will go well with your treatments!

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

Your cancer has progressed on a taxane, and tykerb ?Like Lorraines had. Now that T DM-1 approval is within " sight ", 6 months ?, I am encouraging "Late " Stage IV pts ( multiple re-occ's, progression on taxane/tyk. ), to give compassionate use a try.
Gen. will soon turn in final data from EMILIA , then its up to FDA in this country. Gen. seems more open to comp use requests as they have finished trial FDA forced on them.
I dont know if things could work similarly in Austr., w/ comp use ? Gen pays for drug, but ins has to pay for other expenses, labs, scans etc.

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

Phil I have applied for Compassionate access - apparently it is a global thing. I will know by Monday if I have approval. Apparently so far there has only been one request here and it was denied so I am unsure of my chances but hopeful.

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

Hi Amanda
I will be keeping everything crossed so that you get this soon. I have not heard of anyone yet getting this in England apart from in trials.i wondered if this was because its not licensed here at present.
Hope yours will be the request they grant
Ellie

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

Good luck, over here everythings gotten so political w/ This FDA , and their agenda to punish pharma for supposed past transgressions. We end up being punished . I see a lot of that FDA craziness in the T DM-1 approval process. Waiting for approval based on EMILIA was pushed on the co. by the FDA . Theresa seems like a trial that , at least partly, aimed at enrolling more pts, getting the drug to more pts, in response to This FDA 's crazy rejection of t dm-1. have you ever heard of a randomization where 2 out of 3 get the better drug, t dm-1 ? its usually 50/ 50. Marianne , other trials testing combos like pert., - let them test them on folks w/ first re-occ's. You Late Stage IV people have suffered enough.
Over here we continue to fight to have This FDA thoroughly investigated. We also want the comp use process overhauled, w/ an FDA that works for us. Pushing co's : If you think your drug is good enough to be considered for acc. approval, then its good enough to give Late Stage IV's thru comp use. When our youtube video from our June protest comes out , you will see plenty of signs for FDA reform, but also a few purposely stating " Genentech : Where's the Compassion ? ", " Roche Holding AG : Is This Personalized Health Care ? ". They gave no comp use last yr, we have heard they are more flexible lately. About Time , Lets See It ! If you are Late Stage IV , reoccurences plural, high over expr of her2, progressed on a taxane , tykerb, We think you deserve Compassionate Use ! These Co.s , Researchers, FDA, cannot do their research w/ out YOUR Tremendous Stage IV SACRIFICE ! Speak Up ! Get your fam, friends to call your reps, and your mainstream , big advocacy grps. Speak up for Stage IV Rights ! Darlene Gant did, and got comp use for pert !

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

Ellie - my onc had not heard either - I don't think Roche advertise it but I am led to believe the program is global and all decisions made centrally in Basel.

Phil - I am not completely up with what goes on with the FDA but in Australia we tend to follow pretty quickly. Our issue is that the government subsidies the drugs not private insurers so the supply can be severely restricted with few options to access outside funding personally once TGA approval is granted. We also get very few trials despite being a developed nation with a good healthcare system. I guess we are considered too far away but we get cancer too. I am so grateful for sites like this one where I can access wonderful information.

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

Hi Mandy, I am not sure if it is still on trial here. I know it was on trial at Peter Mac so is it worth consulting with them to get onto it? I am off there for a second opinion next month. What are your oncs plans otherwise?

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

Hi Chris
I am not eligible for the Peter Mac trial as it is a first line trial.
I possibly qualify for the Teresa trial which is at Frankston Private. I will pursue this if my compassionate request gets declined. If I was to be accepted and draw control arm (physician's choice) we are thinking either Herceptin Tykerb combination or Herceptin Abraxane.
Who are you getting a second opinion from?
You see Rick don't you?

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

I'll PM you.

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

Good luck Amanda w/ comp use ! Hopefully in future the approval system world -wide will be more flexible for late stage IV pts. more pt involvement in decision -making. I hear lots of good ideas from people about improving access. Thinking of Australia, here some cancer advocates are trying to address the lack of trials in rural states thru legislative measures to attract pharm co's to do their trials there. I'm not up on details but ideas include offering laws requiring ins to cover total costs of later phase trials, etc. So we always hope for a better future !