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Amanda, read Denise's post again, she is a wise woman with wise words, don't give up hope

Dawn. Xx

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Dear Amanda,So sorry to hear about your progression. I got bad news today that my cancer did not respond to TDM1. Progressed to bones (right hip and thoracic) and liver is enhanced along with chest wall. Husband, kids and myself are a mess:(

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You guys are wonderful! Here I am sitting in day oncology, hooked up and ready for my H, P and Abraxane. I'm cruising the net for wigs and Internet shopping.

I'm ok - it helps that I feel so good. I had a huge "dump" with my counselor on Wednesday and felt sooooo much lighter. My middle child is really struggling and when I picked her up from school on Wednesday she was pale, clammy and vomiting from a migraine. No school yesterday for ANZAC day and today she was worked up again tears and tummy knots - that's what I hate so much! It is not fair on my kids or my husband. I need to be here to love and nurture so I am focused on that.
I welcome all of your suggestions and surround myself with your hugs and love.
As I said to my oncologist - while I am breathing I have hope so 'on we go.'

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I am so sorry about the progression. I feel for you and understand what you are feeling. I was first diagnosed with HER 2+ cancer in 2003 when I was 38. My children were 2 and 4. I have prayed everyday that I get to raise my children. I pray that you will also. Keep the faith and try whatever they suggest. It may just be the one that works for you. Good luck and I will keep you in my prayers.

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Amanda, I found the best wig place to be Chiquel in Moonee Ponds. Nice bright salon, lots of different styles to try on. It is a hairdressing salon on one side, so you can get it trimmed to suit as well. They also sell wig stands shampoo, fake eyebrows, eyelashes, anything that you can think of! Helpful service too. I think I had my hair shaved and wig on by about week seen of Abraxane.
Hugs to you
Dawn xx

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Dear Amanda.

This sucks. It truly does. But over the 9 years I've travelled in cancer land, I've seen people bounce back time and again. One day they find a combo that works for them, and suddenly the whole picture changes. The fact that you are still healthy and active gives me hope that you will be able to last long enough to find that magic bullet.

Leaving my kids behind was my worst nightmare and you are living it. My GP knows a lot about alternative medicine, and he has been treating me with mistletoe shots. It is an anthroposofic treatment and you can google it. Here's one article: http://europepmc.org/abstract/MED/11...rnzq4d5wnprb.0

Iscador and viscum are good search words for this.

I wish I had more, as you deserve all the help you can get. Let me know if you want to know more.

Love

Jacqueline

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What about AVASTIN? I've had very good luck with that, and I think that Genentech still has a patient access program?
I always say that I cannot reconcile who I see in the mirror everyday with a woman with advanced stage cancer. Shake my head. I, too, can "pass" for normal, healthy. Well, maybe not normal, but seemingly healthy. It's a blessing to count and my mantra for the past 6 years has been, "I don't know how this is going to be okay, but somehow it is going to be okay" Whatever it means, it seems to reassure me. Keep your eye on the kids and stay out of anxiety-ville as much as you can. So many woman have had good results with Abraxane. I'm sure you'll follow suit.

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Amanda, I'm heart sick so much sadness you are always in my prayers. Gods blessings to you and your beautiful family my friend,

Your friend, Nancy

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Hey Girl!
Anything new?! I was thinking of you last night...around 7:30 my time...and you made me smile! :) Here's what went down...

I went to my son's concert last night, and as I walked the 200 yards or so to get from my car to the auditorium...huffing and puffing like crazy...I had to stop and chuckle, thinking of you...lung mets aplenty...running, walking, playing footall with your 'baby'...
and here I am...supposedly with healthy lungs...suckin' wind like geezer on his last leg! Stupid, crazy cancer!

The concert was excellent! (his completely impartial mother stated modestly) My son did the voice-over for a patriotic medley...quotes of Lincoln's Gettysberg Address - the kid could do radio! And, of course, the real reason for the concert...he plays a mean French Horn too.

Fortunately, the show was also long enough that I had time to catch my breath before the looong, forced march back to my car. :) I could have been driven back to the car...but I'd have to have 'bumped' one of the 80-year-old grandparents, or the guy on crutches from the car to do it...so I walked...sloooooowly.

I hope you have a terrific day! And, thanks for the giggle!
Sending prayers and love...
Denise

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Great post Denise, and I'm sure that will make Amanda smile - I did, but not at your expense, but at your spirit!!
Marie x

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Hi Amanda, how are you going, have you had your second dose of Abraxane now? Feeling o.k.?

Thinking of you. Dawn xx

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Denise you have me chuckling!
I had my second Abraxane on Tuesday - so far so good. Just about to have a little kip but feeling ok.
I've had a difficult week as with the deaths of a couple of friends to BC - one who I was particularly close too and who was an amazing women and a fellow He2 gal. Also one of my children is having significant issues dealing with my disease and it is really tough going at the moment with her. We started seeing a psych yesterday with her so hope that helps but she is home again from school today 'feeling sick'. I have tried so hard to keep our life so normal but she is one intuitive little 8 year old who quite possibly is a very old soul I feel and desperately trying to teach me something!

Saw my oncologist on Tuesday and we continue to actively treat and she is attending ASCO and hoping to get some new ideas there for me.
Thanks for checking in on me gals. Xx

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It took me 7 chemos before I saw regression. It was gemzar (with perjeta) that did the trick. So yes, you can hang on to hope for a while longer.

My tumor burden shrunk my 50% and now I have a rads consult (tomorrow) to see if we can zap some more away.

Keep plugging. It's strange how some work and some don't.

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Just wanted to let you know I was thinking of you today, and sending lots of light and positive energy your way.

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Thinking of you Amanda, I hope your daughter is doing ok.
Dawn xx

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Always pray for you and your family Amanda. Peace my friend.

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Dear Amanda,

I, too, used to hope against hope that I'd be one of those "miracle" stories. Every time a scan has showed that not to be the case I have gotten scared and sad and discouraged.

But you are so young, and your kids are so young! My heart breaks for you and your family.

I only had a few doses of Abraxane, and at the time it wasn't clear that I did have lung mets, but the little "suspicious" nodules in my lungs responded. Perhaps if I had stayed on it longer it would have knocked them all out.

I liked Abraxane better than Taxol. It was great not to have to have steroids, and the side effects were milder.

We always want to protect those we love from suffering of all kinds, especially suffering that we caused. But that's really not possible is it? I mean, we can avoid deliberately hurting others, but life always includes bad luck, calamities of various kinds, illness, etc. You are doing a wonderful job of modeling for your kids how to respond to adversity. You are resilient, persistent, and proactive. You are sensitive to their needs, and you respond appropriately. You have already given them that. They already have that legacy from you.

We are not the Source of the love our children need, but one expression of it. In the end, everything will be okay. Once you've done all you possibly can, the rest is up to God.

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Amanda,
I'm sorry...somehow I missed the post about the passing of your friends. Just what you needed...
I'm so sorry for your pain and your loss. Beyond the emptiness their deaths leave...I'm sure their passing is an unwelcome reminder of your own struggles, and mortality. I know that's how the loss of loved ones affects me these days.

And, I'm even more saddened about your daughter and the pain she's in. My eldest is having a tough time right now too...but he's 15, not 8...so I don't think it's anywhere near as hard to watch as yours.
For my son, I think the way I look (not at all like the Mom he's used to seeing), and the fact that I'm totally exhausted all the time are really getting to him. He can't be near me without being reminded that I'm 'sick'. Of course, he's known I was sick for over 2 years now, but now he sees it every time he looks at me. And, he's old enough and smart enough to know that this is not like aynthing else I've had to face. For the first time...I think he's worried I might die on him...and it shows.

I applaud your decision to engage a therapist for your daughter. It can only help IMHO. Once again...I just want to say what a caring, involved, top-notch Mom I think you are! She's lucky to have you...and I agree...you're lucky to have her too. She very likely is trying to teach you something...though she's probably not even aware of what it is yet...or why. The ups ad downs of this cancer nightmare are hard enough on US...it just SUCKS that we can't shield our families from it...especially the little ones.

I'm looking forward to hearing about the innovative new plan you and your onc decide on. I'm just not willing to to believe that you're out of luck, any more than I am to think I am. We both have too much fight still left in us. I'm hoping Avastin is my magic bullet, and I'm keeping my fingers crossed that your magic bullet is coming back from ASCO with your doc!

Sending love and healing light to you and your precious daughter!
Denise

PS - as a teacher...with more than 25 years in a classroom...I can tell you with great authority that sometimes 'at home' is where kids need to be. I call them mental health holidays...and being with Mom is more important than ANYTHING that happens during any given school day. I also have very radical ideas about homework if you're ever interested! :)

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Great post Denise

Go on, tell us about the homework!!......

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Lol! We have a plan for a mental health day too - one a month and she gets to choose and of course if she is really not coping she is home and there have been a few. Homework and taking a backseat too and afterschool activities. It is lovely that she needs me - I want to be there for her but I have two other children who also need me and a me that needs me to help me heal - quite a juggling act but we are working through it. Cancer is tough on our family like all others. We continually learn, and just as I think we are coping fine, my hubby thinks it is all falling apart. Ups, downs and arounds but I am learning to enjoy roller coasters - never did but I'm trying! Hold on tight! It's a long ride - it may as well be fun. :-)