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

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

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.

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.

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Thank you Ariana

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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.

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

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

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.

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

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

Re: Looking for hope
 

@Benk you are NOT reading too much into this initial response to chemo therapy. This is great news and hopefully will continue. My first chemo showed dramatic improvement within three weeks. Your wife is headed in the right direction. Hang in there! Smile! And believe!!! xx

Re: Looking for hope
 

Thanks Colleen that's what I was hoping, my wife's strength like yours is amazing I keep having weak moments but responses like yours give me a huge lift thank you.

Re: Looking for hope
 

Hi Benk,
I am another living well with stage IV, over 4 years since diagnosis with mets to bones and liver. The Taxotere did well for me and now I am stable on Herceptin (and Tamoxifen). I haven't added Perjeta, as my current treatment is working well for me. However, as a fellow Australian, you should know that continuing Herceptin and Perjeta has become usual here and is completely covered by the PBS.
This time on the heavy chemo won't be easy, but things will get better!
Best wishes to you and your wife..... Pam

Re: Looking for hope
 

Hi Pam
Thanks for your post , we are marching towards next chemo appointment Wednesday next week, it certainly makes me feel better about the situation when I read the responses of the incredible people on this site, particularly at this point in the journey.

Re: Looking for hope
 

Hi all just wanted to update you we are having 4th chemo session tommorow the ct scans just done after 3rd session showed reduction in lung Mets and bones healing so currently on the right track ( fingers and toes crossed ) it's still frighting as you all know.
Thanks again for the advice and support. We will hang in there.
BENk

Re: Looking for hope
 

Benk, Wonderful news !!! Keep us posted. HUGS

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Great news @Benk! Your wife is heading toward a complete pathological response to systemic treatment. So happy to hear this news!

Re: Looking for hope
 

Great news, Benk - hope the side effects are bearable and that reduction continues.
Best wishes.... Pam

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Fabulous news! Continued prayers for a good response and minimal side effects.

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Thank you all for the hugs and best wishes and the same back to you.
Pam she is handling them well good days and bad you know how it goes.
Colleen I haven't the chance to look up " complete pathological response to systemic treatment " but I like the sound of it!

Once again I marvel at the strength of all of you.

Love and hugs BEN k

Re: Looking for hope
 

Benz, I just read this thread, but wanted to give you hope if you are still reading posts.i was diagnosed in March with stage 4 her2 positive cancer that spread a lot in my bones. I had it all in my spine and around it, in the bones in my arm, in my sternum bones in front and in my lymph nodes in front. In July after 6 chemo treatments with herceptin and projeta, and surgery on my spine, my scans are coming back clean. Hang in there !

Re: Looking for hope
 

Hi cereisez thankyou for posting , yes I do still come to this blog often. Thankyou also for your words of encouragement it means a great deal when I hear from all if you amazing lady's on here in particular in the down moments which you happend to catch me in when your comment came through so you made an uplifting difference to our day. We have finished our 6th chemo session and are going for pet scans this Friday with onc apointment Monday , so fingers are crossed for further improvement on the last positive scans halfway through chemo. Ned is my prayer. Then continuous herceptin and pajerta. We are hanging in there and I will post an use next week to let you all know how we are going. Thanks again I'm glad to hear your having positive outcomes.

Re: Looking for hope
 

Benk,

Joining you in the prayer for NED!

Carol Ann

Re: Looking for hope
 

Hi all sorry I haven't updated for a little while just thought I would fill you all in on we're we are at.
We have finished chemo about a month and a half ago with resulting pet ct scans showing bone mets " healed " and no new ones, lungs healed and some question mark as to wether it was cancer in lungs or something else although the onc believes it was / is and no visible cancer in the breast! They are saying no macectame at this point ?? I question that one and have some reservations about it. There are two " nodes " in the chest that are still "there" but stable.
The oncologist was pleased with the results and we have another set of scans due mid December. Continuing herceptin and pajerta with bone injections and hormone blockers etc etc .
Keep fighting love and hugs from me.
Ben

Re: Looking for hope
 

That is great news Benk. I’m glad to hear that your wife responded so well to the medication.


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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

Re: Looking for hope
 

Great news, Ben! I am glad you updated us.

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Great news! I am so glad your wife has had such a positive response. The mastectomy issue is one to explore as the doctors themselves seem to be unsure about the benefits for Stage 4 women. You might get some feedback here if you start a separate thread. I hope the current treatment isn't too hard to take and that the stability continues for a long, long time.
Best wishes..... Pam

Re: Looking for hope
 

Wonderful news, Benk! Thanks for the update.

Carol Ann

Re: Looking for hope
 

Thank you for checking in! It's wonderful news and I'm happy for you both.

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Thanks to all of you for the support and well wishes, I'm hoping the response is a sign of the future!!
I'm always thinking of all of you and the support through this forum has meant a lot.
❤️