More Progression
 

Hi Folks
No other way to put spin on it - wish I could like NEDenise! I have imagined that I have sarcoidosis, continually have my scans get mixed up with someone else's but alas I think I have to come clean with myself!

So TDM1 didn't work for me and I got compassionate access to Perjeta - we decided to try it with Carboplatin. I had scans today - 4 months down the track - significant progression. 15-20 new spots in lungs, new mediastinal nodes and spreading further up neck but not big enough to cause problems. Existing spots some the same others bigger - overall 30% progression of disease load.

We have a plan - I will keep on Perjeta and Herceptin and swap to weekly Abraxane. There are numerous cytotoxics to try yet but as nothing has really worked for me previously I am reluctant to keep gambling with likely little benefit.

If you meet me in the street you would think I was such a healthy 40 year old apart from the niggly cough. I can still pass people on my morning walks and breathlessness is not a problem. It is difficult to believe we started talking about end of life care today. My son only started school 3 months ago.

I naively have always thought I would get better - that I would be one of the miracle stories despite the odds being stacked against me. I am fast starting to lose that faith. I cannot yet fathom that I am at the end of the road. I do so much to heal my body. I seem so healthy - despite 2 years of chemo, I still menstruate, I have a full head of hair, clear skin and bright eyes.
Can I regain hope?

Re: More Progression
 

Manda, you are amazing. I have hope for you - You will turn this around.

The abraxane will be just the thing.

I am sending prayers too...

Rachael

Re: More Progression
 

Amanda,

I am so, so sorry that this has happened. You DESERVE to have some regression! Is your medical team absolutely sure that hormones aren't part of the driver? What about metformin? Do you see an integrated doctor? What about hyperthermia?

You are doing so much and from your signature you haven't been on something like Abraxane for awhile, so I hope it works along with the Perjeta and Herceptin to obliterate the spots and nodes.

I'm enveloping you in a huge hug and please, please do not lose your faith.

Re: More Progression
 

Thank you.
I have had my lung biopsied and have no hormonal involvement. The thinking is I am not likely to benefit from metformin - I think it is due to my body type etc... But I will ask the question again.

My biopsies have confirmed that I am still her2 positive and have her3 expression as well, I also have a p53 mutation. My most prolonged response has been when a pi3k inhibitor has been included in the mix - affinitor. I do not have a p13k mutation.

I have only ever had two treatments with a taxane so perhaps this will help.

I see a traditional Chinese medicine dr and have included many integrated elements in my healing. In Australia integrative Drs are difficult to come by - they exist but are considered alternative rather than truly integrative unfortunately and they do not work together with oncologists and vice versa. I haven't tried hyperthermia - I have looked into some German clinics but they are a very long way away from home and my children as a long shot.

My oncologist is wonderful and I have asked her to look into some more options including neflinavir and kevetrin (phase 1 trial of p53 drug) - she has told me never to apologise for having hope and that she has not given up and that I am amazing and she will keep working to keep it that way...

Right now, I feel good apart from a niggly dry cough, I kicked the football for 45 mins with my son this afternoon, I do most things I always have - while I am breathing there is hope.

Re: More Progression
 

Oh Amanda, I'm sorry that you haven't had the response hoped for from the Perjeta. I'm an Abraxane chick (getting shrinkage again from it at the moment), and it is synergistic with Herceptin - not sure about Perjeta, but gee I'm going to hope it's a great combo, and you trailblaze for the rest of us here with that combo.

Your overall health will always be a huge bonus in getting through this, and I would love to run into you in the street, or kick a ball with you, or get over-taken by you on a walking track!

And with regard to your question about regaining hope, I believe yes you can.....

Marie xx

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Amanda, my heart goes out to you. When will they scan to see if the Abraxane is working? There are so many different kinds of tumors, that might just be the combo you need. You say you've only had a couple of taxanes--was taxol one of them?

Interesting that you have a P53 mutation - is it BRCA 1 or 2? Kiri has a mutation, a p.D7E variant that she inherited from my husband. Its "clinical significance remains unclear." I wish they would do more investigation along these lines. The kevetrin trial sounds promising.

Keeping you in my heart and prayers. With your energy and great physical condition, you remind me of my daughter, and also a dear friend who has been living strong with Stage IV for 25 years. Always keep up hope.

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I agree! The abraxane will be the drug for you.
Yes, you can regain hope. Yes, yes, yes!!
I try to tell myself that everyday.
I'm sending you some BIG hugs from one young momma to another.
Jill

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You are amazing. You and yours are in my prayers.

- Penny

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Amanda, I'm prayin' and believin'!

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Hi Amanda!

I'm new and so proud of your post. I can't imagine being so young and facing these fact. But we all know people live long happy lives despite this. Or we love the days we have. I'm at that point.

You're in my prayers and I'm giving you a big cyber hug. You might not feel it but I did - I'm still doing chemo and home in bed - first day off from work b/c of it. I understand strength but now appreciate rest and recovery.

Your journey is far from over. There are options and I'm going to be checking up on you. If you don't mind :)

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Running a search through some non-published stuff that not many have access to. I will get back to you in a private email tomorrow. I am not sure any of this will help, but i have to look and see.

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Amanda,

I'm so sorry about the scan results I so wish they were somebody elses' too - like cruella De Ville (just watched 101 Dalmations with my little girl!)
Good luck with your new treatment plan - you're onc sounds like a keeper for sure.
Prayers

Jenny xx

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Dear Amanda,

I am praying that Abraxane will be your magic bullet. You are a Warrior Woman, and I hope that things turn around for you quickly. Everyday is a new day - with a promise of good things.

Sending lots of love and hugs from a fellow commonwealther.

all the best
caya

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Amanda,

Your post has touched me deeply and I so wish I could beat that cancer's snot out of it for you! Please never give up hope!

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Amanda,

Your amazing physical and mental strength is going to help you tremendously in the upcoming battle. I'm certain your doctor will find the right treatment soon. Hang in there. We are sending you good vibes.

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Amanda, I am sorry to hear this. Damn cancer! It is time you got a break, hopefully Abraxane will give that to you. I didn't find it an easy ride, but it got me to NED, so I have my fingers and toes crossed for you that it works well. It just doesn't seem right that you are feeling and looking good still, does it? At times I have hoped that it is all a mistake also.

Hugs to you
Dawn xxx

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Dear Amanda,
So sorry to hear these latest results, but I know you can't lose hope - not when you have those gorgeous kids to buoy you up! Abraxane seems to work well for many, and your new combination sounds good.
Will be thinking of you..... Pam

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No! No! No!
Can you hear me screaming?! This cannot be happening!

Amanda, my dear friend...
no doubt about it...this SUCKS! Up...down...every-which-way-from-Tuesday!

The injustice of this whole mess is staggering. So many bad people in the world get off scott free...and terrific people like us...get screwed.

And, what about our kids?! What the hell did they ever do to deserve this nightmare!? Sh%#! Sh%#! Sh%#! I'm not even sure whether this makes me more sad...or angry. I bet you're having trouble deciding that too.

Honestly, you may have noticed...I don't do sad very well...so I think I may already have jumped to angry...sorry about the potty language.

But...and I hope this doesn't sound too "Pollianna-esque"...
without hope...
the anger is wasted...and we can't have that!
Rage against those lung mets! They hate that.

The fact that you are still feeling so well physically tells me that your body is not giving up hope. That alone makes me think this story is a looooong way from over. So, let's cut your brain and spirit a break for a bit...they deserve a chance to wallow in despair...but not for too long...or they might get stuck there...and that would be bad...very baaad.

Now...45 minutes of kicking a football...girl, I'm not exaggerating when I tell you that 4 to 5 minutes of kicking a football would have me wheezing and panting...you are amazing to me. Not just because you're able to stay active, but because, whether you're doing it on purpose or not, you're keeping life normal and happy for your family. That's hope in it's purest, most selfless form...IMHO.

And, the fact that you're already exploring new treatment options, and making plans also tells me that hope is still alive in there...it's just kinda tired right now. BTW...end of life care discussions do NOT mean end of life is near...it just means you are planning. Ted and I have had those discussions many times over the years...for both of us...long before BC reared its ugly head. Everybody should have a loose plan in mind long before they ever need it.

So...my expertise with lung met meds is non-existent...but having said that...you mentioned that your cancer hasn't had much experience fighting taxanes. My cancer hated TAXOL! And so did I...it was absolutely the hardest 8 weeks of this whole nightmare. I actually cried (something I've only done twice since this all started) and asked the onc if I really had to have the last treatment. It was misery. Painful, exhausting, misery. But, alas...it seems to have worked.

If my opinion matters at all...I really, truly don't think someone who is still feeling so well physically can be "at the end of her road" yet. It just doesn't seem like that can be true. I agree that the progression news is not good...but the fact that you are still so strong makes me think that treatment options still untried are the ones that will stop things in their tracks.

Realistically, neither one of us may ever be NED again...but that doesn't mean we can't see our kids finish high school...get married...I'm even hoping to cuddle grandchildren someday.

So...let's take a collective deep breath. Hug our kids...and jump back into the fight. Remember my friend...hope doesn't mean you're happy...it just means you're willing to keep trying...something I don't think you'll be ready to give up on for a good long while yet.

Sending you all the love and extra hope I have laying around! Prayers and healing too!
Denise

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Amanda,
I, too, have been deeply touched by your post.
And I, too, am thinking that your mental attitude and physical strength will help you in this battle. I am also praying and believing.

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Sounds like both you and your oncologist are an amazing team. I love your fighting spirit.

You deserve a miracle. Hoping Abraxane will take you to NED!