New Here & Need Words of Wisdom
 

Hello. I've been lurking but decided to join today.

I was diagnosed in June with PR-/ER-/HER2 positive cancer. I had my sentinal nodes excised during my medi-port placement and they were negative. So far, good news, right?

Well I started neoadjuvant chemo in June - Taxotere, Carboplatin, Herceptin and Perjeta, every 3 weeks - and have had three treatments. A week after the third treatment I had an ultrasound and it showed the tumor hadn't changed. I'm heartbroken and so discouraged. I've read stories about how Herceptin and Perjeta are practically miracle drugs for some people. I guess I'm just not one of them. :/

Thoughts? Advice? Words of wisdom?

Thanks in advance!

Re: New Here & Need Words of Wisdom
 

Pink Flamingo let me just say this , I did AC and by my 3rd round there was a small decrease but not what they had hoped for. I to was sad and discouraged and worse wondered if I made the right decision by not choosing to use perjeta . Well after all that been said my doctor said that once I start the taxol and herceptin then we should see something more it took a few treatments and we saw small changes but again not what we had hoped for then after all was said , done and complete by that time we could no longer physically feel the mass ( I had tumor and a sheet like mass ) This was great news! When we did the final CT scan it showed that the tumor did not shrink at all ( the sheet was gone) ,again very sad and discouraged it at same time Doc did say maybe it was just necrosis we where seen on ct . So did bmx and got some great news tumor did shrink tremendously from 5cm x6cm to 0.8 mm. What we saw on the Ct was Necrosis ( dead tissue) left behind from the chemo and no positive lymph nodes
officially declared cancer free June 15th 2014. Sometimes of course it still hard for me to believe that I no longer have cancer.
Many ladies on this board have stories of there own where they to where discouraged and yet found all positive.

Re: New Here & Need Words of Wisdom
 

Please keep your hopes high!!! There is value in positive thinking!!! You will no doubt hear from many here on this board about their ups and downs, trials, drugs that worked for some and not for others...
We may not have all the answers, but have probably asked most of the questions!!!
You dont mention type of BC that you were diagnosed with. has there been any mention of surgery, radiation?

Re: New Here & Need Words of Wisdom
 

Herceptin/Perjeta IS a miracle for me, but it wasn't an instant miracle. It took a year.

It took me a full year to hear the word NED, and that was after years of dealing with metastatic cancer growing in my liver. I had even cut out half my liver to rid myself of this disease and it grew back. So I never expected to even hear NED, I was just trying to stay alive a bit longer. I started Perjeta (had been on Herceptin for almost 4 years) last August and cancer was still there up until recently, it just became inactive. My second to last scan, my cancer had not grown but had not shrunk either. (Not growing was all I hoped for).

Then I had one a couple months ago..... and now there is nothing there! Was I ever surprised!

It has only been a couple months for you, way too early to expect miracles. Give it time. If your cancer is not progressing, you are ahead of the game.

This is a marathon, not a sprint. You need to conserve your energy and expect that things will take time. It seems that you are not metastatic, right? Well, if you are still not metastatic, you are a winner! And, you'll be more of a winner as time goes by. Next June you may hear the words you want to hear - remission.

I have many many friends in the cancer world and many of them are now dead. They were the most positive, wonderful people I knew. So don't believe that you must always be positive. Sure, it is good to be hopeful and it is also normal to be discouraged. Life is easier when doing grueling cancer treatments if you can put it in perspective but we all have many moments of despair and that's normal. But in this case, you are too early to be worried it hasn't worked. It still may be your miracle.

*hugs*

Re: New Here & Need Words of Wisdom
 

I had surgery before I had chemo so I am not able to gauge if the treatment was useful or not because all of my visibly affected tissue was removed. I couldn't stand the thought of it staying there once I knew it was cancerous. You just have to have faith that it will work. Don't be discouraged.

Re: New Here & Need Words of Wisdom
 

I also had surgery then chemo and radiation. since it's still only in the breast I would think they would do surgery to take it out and then radiation. the chemo may be in hopes of it shrinking before surgery or to avoid any spread.
don't be discouraged.
health and happiness
sarah

Re: New Here & Need Words of Wisdom
 

Thank you all for your responses and encouragement!

To answer a few of your questions: My cancer is IDC. The reason I am doing chemo first is because I was able to get Perjeta this way. I was not eligible for it unless I chose chemo before surgery. I am scheduled for surgery in November. I am having a bilateral mastectomy w/ reconstruction because I have long history of breast cancer in my family. I am BRCA negative and in my late 40s.

As far as I know I will not need radiation - I've had 1 enlarged node biopsied early on, as well as my sentinal nodes excised and all of those have been negative. My CT and bone scans have been clear.

Again, thank you for your replies. It helps so much to read other's stories.

Re: New Here & Need Words of Wisdom
 

The best advice I got when I was first diagnosed was "don't worry about anything until you have to." You are being treated with state-of-the-art drugs. You are alive and kicking. You have a plan. That's enough for now. This all takes time.

After some experience with scans, I can also say that reading them is more of an art than a science. As someone else reported, dead cancer cells can be hard to tell from live ones on a scan. Since you're having surgery in November, the pathology report from the actual tissue they remove will be far more accurate. Try not to get ahead of yourself. No need to borrow trouble.

That being said, I agree with CoolBreeze (Ann). Being discouraged and depressed and disappointed is perfectly OK too. Feel what you feel, then decide what to do about it. Pamper yourself. Breathe. Live in the moment. And keep coming back to talk to us about it--that way you know you're not alone.

Re: New Here & Need Words of Wisdom
 

PinkFlamingo, there is an entire thread on TCHP. I have my 3rd on Wed and will ask the MO about scans to see what is happening. I'm curious, but also, know I'd be sad if they didn't show anything... Stay positive! It is tricky doing this chemo stuff and still having the cancer in our boobs, but the FDA says that is what we must do for Perjeta... So, trying to think on the bright side, I realized if I was healing, when the big D hit, those incisions would HURT, so maybe neo is the way to go. See, always a silver lining, just have to look hard sometimes.

Re: New Here & Need Words of Wisdom
 

Regarding neoadjuvant vs. adjuvant chemotherapy: If I had a choice I think I'd have gone with neoadjuvant. Remember, cancer in the breast is not what kills you--it's metastatic disease, in distant organs, that can take you out.

We have had friends in this group who were initially diagnosed and treated at Stage 0--DCIS--who ended up metastatic. Some that I know died. So although it might freak you out to know that tumor is still in your body, getting chemo before surgery can be very beneficial. One benefit is seeing if it responds to the therapy. (I'm not saying yours hasn't. I am not qualified to say. But observing how the primary tumor responds can offer very valuable information.) It's kind of like a canary in a coal mine.

In my case, I was metastatic at diagnosis. At that point, it's known that the problem is systemic, and most of the time treatment is systemic too. I have not had surgery or radiation, just various drug regimens. For people who are metastatic at diagnosis, it's not at all clear that surgery conveys any survival benefit. That being said, surgery is still potentially an option for me. Radiation too, for that matter. My point is there's no rush.

Re: New Here & Need Words of Wisdom
 

I'm with Amy. I would have loved to do neoadjuvant treatment first. The information gained is valuable.

Yes, it is discouraging that the tumor doesn't appear changed. It isn't growing either, so I feel that is great news.

The surgery with the final pathology will really let you know the true story. Plus it is an earlier stage with negative nodes - all very good news. Once the tumor is removed you will be NED (no evidence of disease) and likely have a 90% chance or better of remaining so.