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Benk 05-08-2016 02:29 AM

Looking for hope
 
Hi all wondering if anybody can help with some advice my wife ( love of my life and mother to our 3 year old duaghter ) has in last couple of weeks been diagnosed with her2 positive breast cancer that has metastasized with minor lesions on spine and hips we are about to start chemo with herceptin , pertuzumab, Docetaxel with continuing herseptin every 3 weeks post chemo
We don't know what to expect and scared out of our minds , I was hoping there are some long term survivors that can give us hope in regard to herseptin controlling the decease.

Thank in advance for your help sorry if my explanation does not fit technically.

Benk

Kim in CA 05-08-2016 09:22 AM

Re: Looking for hope
 
Hi Benk,

Please do not despair. I know this is devastating news, and your lives will never be the same, but their is reason to have great hope.

Being her2 + is no longer the terrible diagnosis that it once was. We are now living longer with her2 BC because of the many targeted therapies available to us. Some of the ladies on this board have even achieved complete remission and are no longer on any treatments at all, even though their disease had metastisized.

I was diagnosed in 1997, before Herceptin was available. My cancer metastisized in 2001, and thanks to Herceptin and the other targeted drugs, I'm still here. I'm sure the others will chime in soon. There are lots of amazing metastatic "thrivers" on this board!

Still, I am so sorry that you've received this news. I remember all too well the various stages of grief/anger my family and I went through, but you will get through it. It's a lot for any one assimilate.......

Kim

ariana 05-08-2016 11:48 AM

Re: Looking for hope
 
Kim in Ca,--------Being her2 + is no longer the terrible diagnosis that it once was. We are now living longer with her2 BC because of the many targeted therapies available to us. Some of the ladies on this board have even achieved complete remission and are no longer on any treatments at all, even though their disease had metastisized.

I didn't know remission was even possible. Thanks for the insight.

Benk 05-08-2016 01:37 PM

Re: Looking for hope
 
Kim ca your journey is truly inspirational thank you your words do give me comfort and hope more than you can imagine.

Benk 05-08-2016 01:38 PM

Re: Looking for hope
 
Thank you Ariana

tricia keegan 05-08-2016 02:38 PM

Re: Looking for hope
 
I agree Kim's survivorship is very inspirational and while I was one of the lucky one's that had Herceptin in 2005 as early stage, I've been on this site long enough to know there are many others just like her so please take hope from that and my best wishes to you both.

Colleen 05-09-2016 03:41 PM

Re: Looking for hope
 
@Benk I would ask the doctor about continuing Herceptin and Perjeta both during the taxane phase and post. I did taxotere with herceptin and perjeta for six cycles and achieved NED without surgery or radiation. I still receive H & P every 21 days but it is a walk in the park without the taxane. The targeted therapies for HER2 are quite good and things are moving quickly. Believe she will be ok and live life, don't stop enjoying the things that make you or her smile. Keep pushing, always

Benk 05-09-2016 08:35 PM

Re: Looking for hope
 
Hi Colleen thank you for your message I will take on board your advice, my wife is fearful but we are being positive.

Colleen 05-10-2016 06:16 AM

Re: Looking for hope
 
@Benk I also kept "moving" thru out treatment. I swam, did yoga, and walked a lot. I was slower but I never stopped these things helped to heal along with a good accupuncturist (she was a god send). I also meditated and used visualization for the cancer to leave my body. My visualization was gentle and loving, no ninja warriors, I used butterflies. During meditation as I took a breath in I envisioned butterflies coming to my body and touching all the places where the cancer was, as I exhaled the butterflies left my body taking the cancer away. I also turned to an alkaline diet and started monitoring my ph first thing in the morning along with my basal body temperature. This combined with the "gold" standard for treating HER2 got me to NED in six short months. Now it's like living with chronic disease, an infusion every 21 days. I always believed I would be fine and that's what your wife needs to do. Yes this diagnosis is scary but keep your chin up and believe.

Benk 05-10-2016 01:59 PM

Re: Looking for hope
 
Hi Colleen we have had exercise recommended and we both enjoy walking so we are going to start doing that more often and swimming , I'm also looking at suitable diets that aid the body to combat the disease. I also read up on the meditation We are close to starting chemo probably next week they are putting in a port in the next two days.
I have to the story's on this site are incredible what yourself and the other women on here have and are going through blow my mind!
I feel even further for you all as I work in an automotive repair industry that battles insurance company's all day but with health care here in Australia the cost is shared between health care insurance and government funding with some gaps paid by ourselves so we don't have to battle that issue.

Thank you so much for your advice the strength of all the ladies and this site have definitely given me hope and more positive outlook I do get moments of fear when some site says the herseptin doesn't work but I can't see that evidence when you read the journeys taken on this page.

Thx

Dx may 2016

Colleen 05-10-2016 03:08 PM

Re: Looking for hope
 
@Benk Genentech makes herceptin and perjeta. Genentech offers a copay program here in the states so maybe they do the same in Australia. Go to the Genentech website to find information it may help reduce some your "out of pocket" expenses. The copay program has been a blessing for me financially. There are a couple of books I have enjoyed and gave me strength and the ability to believe that I CAN slay the BC beast; Radical Remission and Mind over Medicine, both are written by medical doctors. Godspeed

Mtngrl 05-10-2016 07:31 PM

Re: Looking for hope
 
Dear Benk,

I'm so sorry your beloved has hit this road block. It must be especially scary with a small child.

The best advice I got when I was diagnosed in 2011 is "don't worry about anything until you have to." I have learned to live one day at a time.

I haven't spent much time at "NED," (which means "no evidence of disease") but my cancer has been pretty stable, and I have a good quality of life. My diagnosis was before Perjeta. Adding it has been good for me, though I've also had periods of time on other chemo drugs.

A metastatic cancer diagnosis has a way of focusing the mind, but it's best to focus on living, and on gratitude, and on what's truly important.

The people I've known whose approach to cancer most inspired me had "grit, grace, and gratitude." A hefty dose of denial is also extremely helpful. I never exactly forget I have cancer, but, believe it or not, I'm kind of used to it now, and it doesn't run my life, nor has it ruined it. I'm still here, and still doing well, so cancer and I appear to have found a way to co-exist, at least for now.

Benk 05-12-2016 04:31 AM

Re: Looking for hope
 
Mtngirl thank you for your advice we have been told to take a day at a time and are starting to get our heads around it , I can't help thinking sometimes when I read the journeys women like your self have taken in your list below your comments that we are going to need to be very strong ! Our journey officially begins next week with chemo beginning so again thank you for your comments it definitely helps.

SoCalGal 05-12-2016 11:31 AM

Re: Looking for hope
 
Worse than chemo, is the anxiety before one's first chemo. Cancer is a mind game, and you are just at the beginning of getting your game on. I wish there was a magic wand to make this path easier, but the best thing is to know people who've been there, done that, and are STILL HERE, so that's US on this board!

My kids were 6 & 8 when I was first diagnosed in the OLDEN days, before herceptin and before a lot of the good drugs to mitigate the chemo side effects. My kids are 26 and 28. Walked my daughter down the aisle last September!! I'm a 20 year surviver, the last 9 (NINE) with metastatic disease. As I love to say, cuck fancer.

Keep us updated...you will get through this and a year from now be able to help other newbies!

If you're looking for hope, you've come to the right place.

Mtngrl 05-12-2016 02:55 PM

Re: Looking for hope
 
I don't think I'm all that strong. I have sought help, like you're doing. I've taken inspiration from others who preceded me. I've figured out what I can control and I've let go of all investment in the outcome.

It's not positive thinking, it's radical acceptance. They seem alike, but to me they are polar opposites. I don't try to trick myself into not thinking about the cancer, but I also work to avoid telling myself stories of disaster and catastrophe. I know I have cancer. I don't know yet how that will turn out.

It's not magical thinking. It's nonanxious realism. I know I'm alive now, breathing now, thinking and feeling now. Right this very minute nothing bad is happening. If/when something bad does happen, I'll address that in that moment of now.

The signature serves to remind me what happened when. And it also, hopefully, documents the path I've taken. I'm sure it's hard for you to imagine that a lot of this will become routine and start feeling normal. Everything is so alien and frightening now. Try to stay rested. Literally stop and smell the roses. Breathe. Pray. Sing. Love. Laugh. Those things are always possible, and they are much sweeter in the shadow of a frightening diagnosis.

Whonoze 05-13-2016 06:28 AM

Re: Looking for hope
 
Benk: I completely agree with Colleen's "keep moving" advice. Remission from Stage IV is possible. I had Taxotere, Herceptin and Carboplatin in 2007 and have been in remission since completing that course of treatment.

Benk 05-13-2016 04:24 PM

Re: Looking for hope
 
Thank you all for the advice I'm hoping our story goes in the right direction.
We now have the PORTA cath in and looking at starting treatment next week. We are taking daily walks at this point and I'm researching some bone and muscle building aiding exercise.
I'll keep you posted.

Benk 06-01-2016 07:00 AM

Re: Looking for hope
 
Hi all we have started chemo are 3 weeks out from first infusion of Docetaxel, her Elgin and perjerta, my wife is going ok but I'm having moments of doubt and weakness. Since I last posted we had pet scan that confirmed minor lung issues on top of bones.
Just a questions for you all the constant pain in my wife's affected breast has stopped and the hard lumps have softened quite a bit, we are taking this as a positive sign , wondering wether I am reading to much into this or it is as positive as we think? Hoping it means other areas will have same result?
Can't thank you all enough for advice it's been greatly helpful.

ariana 06-01-2016 07:11 AM

Re: Looking for hope
 
By my second infusion, I had a lot of tinkling in that breast and I knew that the tumor was being eaten away like the Pac-man game. By the time I had my Mri, it showed that it was gone. When I had my lumpectomy, to make sure, they FOUND two tiny specks and plenty of clean margins and nothing in the lymph nodes.

But it did come back a year and 1/2 after treatment. Don't depend on blood test. Mine were in the normal range. There should be an mri at least once if not every 6 months.
I now have a pet scan every 90 days . Feb. Was good May I faild. I am now on Kadcyle.

Benk 06-01-2016 07:23 AM

Re: Looking for hope
 
Thanks Ariana the tinkling started whist still hooked up to iv,
I'm a bit concerned a out the metastasis areas.


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