Next plan of attack
 

My follow up scan showed slow progression again - enoug for me to discontinue the TDM1 trial - it was slowing things down but not stopping anything. As my oncologist said yesterday, my cancer seems to like my lungs.
I have been granted access on a compassionate access scheme to pertuzamab - are going to try carboplatin, herceptin and pertuzamab. Not a common combo at all but I have no exposure to platinum therapy so I had a preference for that over Abraxane at this stage. We will try Abraxane in the carboplatin in ineffective. It will take 2 weeks to get pertuzamab into the country so I will start with just herceptin and carboplatin.

How do I feel? Flat, really flat. Up until now I have had no symptoms but I starting to cough more despite still being able to swim in the ocean (I've even entered an ocean race on Australia Day). It feels a little like a slippery slope. I have tried for the past 20months to get on top of this with both the best medicine around and through my lifestyle and approach to living fully. Here was what is supposed to be the best drug around and I didn't even get 4 months out of it. I am sick of being told how unusual I am. I have a little boy about to start school in a few weeks and it breaks my heart. My girls a still in primary school. My oncologist remains positive and talks of dual blockades and new targeted therapies but I feel like we are clutching at straws. We started talking access to phase 1 and 2 trials in the future should what I try next not be effective.

I've always felt I could cope with this, manage my "chronic illness" for many years. For the first time, real doubt is entering my head. I envisage being there when I have grandchildren and my children's marriages but the picture is no longer so clear.

I know I'll feel better once I start and I am ever so grateful for access to perjeta (I will be one of very few women in the country having it). Just had to whine for a little in a safe place.

Re: Next plan of attack
 

Oh Amanda, I so sorry to hear the T-DM1 was not as beneficial as hoped. As a BC sister and as a mom, my heart goes out to you sweetie. It is so disheartening and can really flatten us out when we don't get positive results and the uncertainty about our future is so emotionally harming. Damn this cancer! But I am glad to hear that you will be starting carboplatin and herceptin, and pertuzamab shortly and that there is more ammunition available for you, and I hope and pray this combination will be Your magic bullet. Continue to eat and live well and share life with your children. Huge hugs, Joanne

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Hello Amanda,

Looks like you and I have something in common...both of us just got kicked off TDM1!!! My recurrence is already over 1cm in my chest wall :(

Not sure what to do next. Feeling blurry too. Canadian health care is different. Not so many options, and lots of restrictions.

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Hi Amanda, I am disappointed T-DM1 didn't work for you, that sucks. I am really happy that you were able to get perjeta though, that's great. I hope it is really effective. I am sure you do feel flat at the moment, but hopefully when you get fully going on the new tx, you will perk up a bit. Thinking of you
Dawn x

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Hope the next step is very successful.

Cheering for ya,

Paula
P.S. Good for you doing that race!

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Amanda,
Wait!
In a few weeks your team can try the Perjeta and T-DM1 as a combo.
Please do not lose faith, dear sister. You've overcome many hurdles and you will now, too. I just know it.
Keep positive imagery going and a deep connection with spirit. Meditate and see yourself well.
Love
Karen

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I am sending big hugs and prayers from your fellow commonwealth country, Canada, to you dear Amanda...

You know that the darkest hour is before dawn...

all the best
caya

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Dear Armanda, i am sure all of us will give you big cyber hugs from everywhere... just what anyone needs to bump up some positive spirit ! Except for the slow progression on the scan, you seem to enjoy a fairly normal life which is very important for us. ALthough TDM-1 may not be good fit for you, there are still quite a few options that you haven't tried. It takes time to find the magic bullets. What works for other pp may not work for you - makes sense why some respond so well to the initial standard TCH treatment and some don't.

I hope you still see your TCM doctor and pratice Qigong everyday. You are close to China. Have you thought about going to China to consult a credible TCM in Beijing? I know your schedule is tight whist on chemo. I posted about Guo Lin Qigong. I am not saying it is a guranteed life saver but it has done so many miracles that totally floored well trained specialists. Our body is made from millions of cells. I will take whatever works. Plus getting up in the morning and walking for 45 mins won't do you harm. Please email or send me an IM if you need any info from China. I grew up there . Love to you !!

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Ok, Amanda,
Here is where I preach what I find hard to practice...

DO NOT LOSE HEART. Your oncologist remains optimistic is a really big thing. And since you are special, it may just take a special approach to bring about that "chronic management". Keep trying to picture yourself and your babies, and your babies babies, all together.

I have to do "goals" for a peer networking group I am in. Dying by the end of first quarter was not a very inspiring goal. And they want 2-3 years of goals???

I spent 1/2 hour in the shower this morning crying and crying "I don't care about (all the insignificant, and some very significant, people and things in my life) until I was down to the few things that really do matter.

You already know these, and although of course you feel shaky right now, you are stronger than you know and miracles abound.

Keep faith,
Chris

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So sorry to hear your news Amanda! Your reaction to TDM1 is not that unusual - apparently it works well for about 50% of people, and I wish they knew why. Good luck with the new combo. Perjeta is one of the more promising drugs emerging, and there is nothing wrong with the tried and true.
My heart goes out to you, but keep fighting girl!
Best wishes..... Pam

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Thank you all - I have awaken feeling somewhat brighter and your words of wisdom and support from all over help.
Karen- it will be quite some time here until I candy tdm1 and perjeta as perjeta is not eve approve yet - I have special access for which I am grateful. I will reconnect with my wisdom - it always helps me.

The oncs feel I can go back to it again with a dual blockade of some sort. Avastin has also been discussed.
The feeling is herceptin as my only targeted therapy is not enough. The other thing that got me down was that my oncologist said I I'll always need a chemo, that targeted therapy alone is unlikely to keep me stable.
There was talk of neratinib, afatinib, avastin, even pd1 and being tested for oestrogen beta receptors do all is not lost.

Yan Yan - I do still do TVM regularly but my qiGong practice has fallen off. I have met some miracles living and breathing which has helped me to maintain hope but as we all know we sometimes fall down.
Chrisy - you are a wise warrior - I cried in the shower too yesterday - you too ar e so strong and stronger than you think.
Pamela - yes, you are right, tried and tested with a little new in there - lucky I have the chance.

I will reboot and get myself back up and keep going and I must get in and train for that swim!
Thank you!

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Praying & cheering for you, Amanda

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Hi Amanda, good to hear you a bit brighter today!
Best wishes


Chrisy - hugs to you also!

Dawn

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Amanda
That's precisely what I was aiming at..go, girl
Karen

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Amanda
That's precisely what I was aiming at..go, girl
Karen

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Amanda,
I wasn't around yesterday, so I'm just seeing this now. I know all the feelings you discussed very well. My boys are older than your kids, but my worries are identical in every other way.

I'm so glad you had a good cry and are feeling more like your usual, "kicking butts and takin names" self again. You CAN do this, and you WILL...you have 4 very, very good reasons living under your roof. They love you almost as much as you love them!! That's very powerful medicine! And then, there are all those chemo meds out there too!

Sending love, prayers, and positive energy to you my friend,
Denise

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I'm just reading this thread now Amanda - I've been thinking of you lots, especially after the news of your 1.2km swim, and goodness, now the fact that you are going to do an ocean race on Australia Day. You have a great deal of strength, not just for swimming, but for surviving. Never underestimate that my friend! Of course, there are c***p days sometimes, and things don't go the way we hope, but as others have said here, your onc seems positive - I have to say, it sounds like you have an amazing medical team - very impressed. There are a lot of people on your side Amanda, praying for you, working for you, and most importantly loving you!

And thanks for paving the way for Perjeta here in Australia - I appreciate that very much.

Love Marie x

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Amanda,

Sorry to hear that TDM1 was not your magic bullet. Hopefully the next option will be. Praying for you. I just finished Tykerb/Xeloda. PET on 1/8/13 showed progression of mets in my lymphs. My Onc is trying to get compassionate use of TDM1 as she would like to see that be my next course of treatment. Wish the FDA wasn't dragging their feet approving it. If unsuccessful I'm not sure what treatment will be next. Possibly Abraxane. Decision will be made 1/23.

Best of luck. We are all behind you here.

xxoo Donna