plan finally in place
 

On Monday I'm having a drain put in for my ascites and a peg tube for release of pressure and crud from inoperable bowel obstruction.. oncologist says if I can get home after this and gain some strength, I'll be okay for more chemo.. I'm so pissed that I had so much progression on kadcyla that its nearly killed me..

Re: plan finally in place
 

Debsing,

I hear you. I'm disappointed too that you had so much progression on Kadcyla. I am glad that your oncologist is not throwing in the towel.

We'll pray that you regain your strength quickly.

Re: plan finally in place
 

I am so glad to hear from you . You have been in my prayers . I am glad to hear that there is a plan in place!

Re: plan finally in place
 

So glad to hear you have some idea of how to move forward. Thinking of you and hoping for good results from your procedures. Keep strong!
Best wishes....Pam

Re: plan finally in place
 

Debsing,

I understand your anger and frustration. I'm sure it's especially tough when you learn of other people who seem to be doing better than you. I'm sorry you're going through all this.

The best advice I got when I was first diagnosed was "don't worry about anything until you have to." Jesus said something very similar. I'm not one who believes you can cure yourself with positive thoughts, but it makes sense that finding ways to be peaceful is one good thing I can do for myself and those around me when all hell is breaking loose.

There's a practice that some call "mindfulness meditation" and Christians call "centering prayer." It involves quietly sitting and just being aware and non-reactive, focusing on the breath and allowing thoughts to come and go, with no judgment. I first learned it from a book by Jon Kabat-Zinn called Wherever You Go, There You Are. A friend brought the book over to me when I was freaked out and heartbroken. When I woke up at 3 in the morning with my heart racing, in a panic, I could just lie there, do a body scan, put myself back together, and get back to sleep.

Another technique is guided meditation. I've used that too. That might help you.

It would help us help you if you'd do a signature with your treatment history. To get into that part of the site, click on the "Private Messages" link. There you can find tools to create a signature and, if you like, post a photo or avatar.

You are loved. We are praying for you.

Re: plan finally in place
 

Debsing, everything that's already been said here! I am SO glad you posted and let us know how you're doing, I have been thinking about you every day and hoping you were coming through this, and you are! Like Amy/Mtngirl says, if you could post your story/signature, it would help us help you.

Amy, I'm going to check those books you mentioned out ... sometimes it is just too much to keep thinking positive every minute. Then you start to stress/feel bad because you're not thinking positive! These books sound like they might take some of that pressure off.

Hang in there Debsing we are all rooting for you! And I don't blame you for feeling pissed, I would be too. It SUCKS, there's no way around it.

But now you have a plan. That's something positive. And if you ever went to pm me just to vent, I am all ears and here for you. :)

Carol Ann

Re: plan finally in place
 

Debsing.
I've been thinking about you. I am so glad you have a plan in place and hopefully it relieves some of the stress of all this. Keep us posted as to how you are doing and what's going on.
Hugs
Cathy

Re: plan finally in place
 

I am also thinking about you too. I am wondering if your onc can give you Herceptin or Herceptin/Perjeta - either without chemo until you regain strength. They should not curtail your recovery and may hasten any progression from being on "nothing".

Re: plan finally in place
 

Herceptin/perjeta was my very first treatment a year and a half ago and had progression once the taxotere was stopped.. unfortunately.. I'm beginning to wonder how her2+ I really am

Re: plan finally in place
 

Well Amy said what I was thinking. And Carol Ann too.

I meditate every day, since the day I was dx in 1995. I use guided imagery and breathing techniques. I go to my special place (a "find" a friend brought me to in the Catskill mountains that was truly heavenly. Full of elation, serenity, beauty, a haven midst the deep woods. I remember it vividly and it was over 50 yrs ago!). Slowly taking in life-affirming air through my nostrils, holding onto to it for a bit, and then gently blowing it out through my pursed lips, kissing all that is negative goodbye. Letting it go.

Letting the anger and blame go!!!! Opening my heart as I breathe in to being filled with the abundant supply of Universal Love. Living with that Love. Offering it to everyone! Along with compassion, kindness, tenderness, generosity of Spirit and yes, forgiveness..........

It is so immensely healing to your body and your Spirit.

With Love and Light,
Andi

Oh yes, I agree a signature would help us all help you better! And a pic would be grand, so I can see you as I pray for you.
You can e me if you'd like. Click Andrea Barnett Budin and it will offer you that choice. OOOOOO

Re: plan finally in place
 

Hi,

Glad you are able to utter: "I'm so pissed that..." A good sign/technique ... :)

Sending you good vibes.

Re: plan finally in place
 

Glad to hear from you. Was praying. Will continue.

:-) Penny

Re: plan finally in place
 

glad you have a plan. Keeping you in my thoughts and prayers
wishing strength.
Lisa

Re: plan finally in place
 

Debsing,

If you were just Her2 3+ then you would have similar results to the rest of the group.

You must have another factor that is fueling the growth. What is your ER status?

Have you been genetically tested for any other factors? BRCA, KRAS, etc

Re: plan finally in place
 

When I was first diagnosed, I tested 95% er positive

Re: plan finally in place
 

What have you been taking for the ER+?

Re: plan finally in place
 

Strangely enough, nothing. I guess every time my cancer has progressed, its been bad enough to need chemo? I started on herceptin/ perjeta/taxotere, and that lasted for 6-8 months. I had progression two months after the taxotere was dropped. Then I did herceptin/ perjeta/navelbine, and I had regression in some areas and progression in others, so that was about three months. Lastly, there was the most recent disappointment, kadcyla. That gave me 5 months.. never any estrogen blockers.. I think they've focused too much on the her2 aspect

Re: plan finally in place
 

Have you ever said how old you are, or whether you are pre or post menopausal? I personally agree that you need to address the ER+ . It certainly can't hurt!!! Sending a big hug your way!!

Re: plan finally in place
 

Deb, you are going through so much. I am thinking about you and hope they find right combo for you.

Re: plan finally in place
 

Deb,

Glad to hear there is a plan in place.

Hopefully as soon as possible you will be able to resume chemo. Keeping you in my prayers.

Sending you love and good vibes your way.

Adriana

Re: plan finally in place
 

Debsing,

I'd personally contact the oncologist right away and ask about treating the estrogen factor. It can't hurt. I bet you could start treating the estrogen before chemo.

And have you sought any 2nd opinions?

If what you are doing isn't working, try something new.

We are all in your corner wanting you to get strong and well.

Re: plan finally in place
 

Deb,

You said that you are highly ER positive. Please show your oncologist this abstract and ask for Tamoxifen or another Estrogen inhibitor (such as an AI).

http://www.ncbi.nlm.nih.gov/pubmed/24675287

Eur J Cancer. 2014 Mar 24. pii: S0959-8049(14)00217-2. doi: 10.1016/j.ejca.2014.02.022. [Epub ahead of print]
Estrogen receptor, Progesterone receptor, HER2 status and Ki67 index and responsiveness to adjuvant tamoxifen in postmenopausal high-risk breast cancer patients enrolled in the DBCG 77C trial.
Knoop AS1, Lænkholm AV2, Jensen MB3, Nielsen KV4, Andersen J5, Nielsen D6, Ejlertsen B7; Danish Breast Cancer Cooperative Group.
Author information
Abstract
BACKGROUND:
The DBCG 77C trial compared one year of tamoxifen in postmenopausal, steroid-receptor unknown, high-risk breast cancer patients to no adjuvant systemic therapy. After a potential follow-up of 30years we report overall efficacy of the study and results according to subtypes subsequently assessed by immunohistochemistry and fluorescent in situ hybridisation (FISH).
METHODS:
Between 1977 and 1982, 1716 postmenopausal patients with tumours larger than 5cm or positive axillary nodes were randomly assigned to no systemic therapy or tamoxifen 30mg daily for one year. Archival tumour tissue from 1515 patients was analysed and the hormone receptor positive (estrogen receptor (ER) and/or progesterone receptor (PR)) cancers were defined as luminal A if Ki67 low and HER2-negative; as luminal B if Ki67 high or HER2-positive; and otherwise as non-luminal-HER2 positive or triple negative.
FINDINGS:
In the intent-to-treat (ITT) population one year of tamoxifen improved the disease-free-survival (DFS) (hazard ratio (HR)=0.87; 95% confidence interval (CI) 0.77-0.98), the Breast Cancer Recurrence Rate (BCRR) (HR=0.79; 0.69-0.90) and reduced the breast-cancer-specific-mortality (BCM) (HR=0.83; 0.73-0.93). BCRR were improved significantly by tamoxifen in luminal A (HR=0.66; 0.53-0.84) and luminal B/HER2- (HR=0.54; 0.39-0.74) but not in the other subsets, and with similar results for BCM with 30years follow-up.
INTERPRETATION:
One year of treatment with tamoxifen significantly improves BCRR and BCM in postmenopausal patients with ER positive breast cancers. The relative benefit from tamoxifen was not significantly different in luminal A and B subtypes.
FUNDING:
The Danish Breast Cancer Cooperative Group (DBCG) prepared the original protocol (DBCG 77C) and was the sponsor of the study. Funding was not provided to the participating departments. The biomarker study was supported by grants from the Clinical Institute, Odense University.
Copyright © 2014 Elsevier Ltd. All rights reserved.