Help for my mother-long-sorry

Jo40 · 07-16-2009, 09:09 AM

Hello all-

I am posting for my mother, as she has expressed her pleasure that I scour these sites as her "advocate". My mother was diagnosed on 2/9/09 with ER+/PR+/Her2+ breast cancer, Stage IV, with bone mets to the hips, spine, pelvis and both legs. She spent 40 days straight in the hospital after an emergency hip replacement and radiation to the hip. They decided not to radiate the other areas as there are too many lesions, albeit small lesions, to be effective.

She was started immediately on Arimidex, and then a few weeks later, Herceptin every three weeks. She also receives IV Zometa every four to six weeks. She was told that all of these drugs will be a permanent part of her life.

From everything I have read, women who have hormone-receptor positive cancer are the "lucky" ones, since there are apparently many options in the drug arsenals. On the flip side, everything we have read implies that the Her2 piece of the puzzle causes the cancer to be quite aggressive and much harder to control, and that Herceptin/Tykerb can extend someone's life span by a year or so.

My mother is only 63, and was extremely healthy, with never a day spent in the hospital, and an extremely healthy heart (proven by 2 MUGS scans).

That said, I feel like when I look here, and also at BcMets.org, that women go from being fine and with clean and stable scans to being on hospice care, sometimes within mere months.

I feel like having any hope is a waste of time, and is just going to hurt all of us more in the end. It feels like the Her2 is such a death sentence.

Am I wrong for feeling this way, and are there happy endings? I have been reading an awful lot of sad endings in recent weelks, and my optimism is in the tank.

I appreciate any encouraging and realistics words, no matter how painful they may be to read.

My best to everyone on here, who are all so brave!

Jo

Joe · 07-16-2009, 09:20 AM

Jo,

Please email your name and phone number to my wife Christine: cdruther@att.net

I will have her call you. She is a long term survivor.

Regards
Joe

Barbara H. · 07-16-2009, 10:32 AM

Hi Jo,
HER2 breast cancer is a disease with many variables. In addition, we are all unique individuals. I initially developed breast cancer in 1998. Herceptin was not available to me at that time. In 2004 I developed mets: 3cm tumor in my brain, including small tumors in my lungs, liver, skin and nodes. I had brain surgery and then went on Herceptin. It put me in remission for 1 and 1/2 years. Then I developed bone mets. I am currently stable on the TDM1 trial. It has been five years since I developed mets, and I have continued to work full time. I would prefer not to have breast cancer and do not like to go to the weekly treatments. I am also ER and PR negative.

I would suggest that you give your mother hope. There are many new targeted therapies that are in the pipeline for HER2 cancer. While it is impossible to know the road your mother will take with this cancer, it does help to keep hope alive, and to educate yourself about this disease. To put it in simpler terms. Two people may contact the same cold, but have different experiences.

The HER2 support group is to support HER2 cancer patients in all stages of their disease. Unfortunately, that also includes members who are at the end stage or are having a hard time. We are here for everyone, and will be here for you too.

Best wishes to you and your mother.

Barbara H.

Believe51 · 07-16-2009, 11:42 AM

Hello Jo, I am sending you a welcoming smile and letting you know there are many happy endings. Cancer in 2009 is treated like a cronic condition and not the death sentence it was once perceived. Learning what you can on your part will not only pleasure Mom but it will help with many decisions and rally up questions for doctor's visit. Her2 is more aggressive but the list of options to control this disease is comforting. Keep the faith and with the knowledge you gain and the strides Mom takes, hope will replenish itself. I am looking forward to watching Mom recover. The information you will get filtered through the upcoming months about Mom's cancer will let you get to know it better because each cancer is individual. That too, will help make the right choices for what she has going on at the time. Take care of yourself and come to us with whatever you may need.>>Believe51

Joe · 07-16-2009, 12:30 PM

Jo,

Print this out for your Mom:

September 1, 2008
Oncology NEWS International. Vol. 17 No. 9
FOCUS ON BREAST CANCER
Herceptin erases survival difference between HER2- patients

Caroline Helwick

Use of trastuzumab levels the playing field for HER2-positive stage IV breast cancer patients, compared with HER2-negative patients.

CHICAGO—The addition of trastuzumab (Herceptin) to the arsenal of breast cancer agents has elevated the prognosis of HER2-positive patients to that of HER2-negative patients, according to an institutional review from M.D. Anderson Cancer Center.

The retrospective study included 2,091 women with stage IV or recurrent breast cancer who were diagnosed between 1991 and 2007. Patients were classified as having HER2-negative disease (85%), HER2-positive disease treated with first-line trastuzumab (9%), and HER2-positive disease without first-line trastuzumab (6%). At a median follow-up of 18 months, for the whole study population, median survival was nearly 29 months, 1-year survival was 76%, and 2-year survival was 55%.

Outcomes were best for HER2-positive patients receiving trastuzumab (see Table 1). In a multivariate analysis, HER2-positive patients receiving trastuzumab had a 44% reduction in risk of death, compared with HER2-positive patients not receiving trastuzumab (P < .0001). Compared with HER2-negative patients, HER2-positive patients receiving trastuzumab had absolute increases in survival of nearly 12% at 1 year and 8% at 2 years, she emphasized.

“The introduction of trastuzumab has altered the natural history of HER2-positive breast cancer,” said Shaheenah Dawood, MD, who presented the study at ASCO 2008 (abstract 1018).

Commenting to ONI, Clifford Hudis, MD, chief of breast cancer medicine at Memorial Sloan-Kettering Cancer Center, pointed out that CALGB9840 also found that HER2-positive patients receiving trastuzumab had outcomes as good as HER2-negative patients, and that adjuvant trastuzumab studies suggest the same. “The M.D. Anderson study is a large single-institution trial that is confirmatory,” he said.

Initial nonresponders may benefit

Investigators from the National Cancer Institute of Italy in Milan also found that giving trastuzumab in the metastatic setting greatly increases survival, including continuing it upon progression or re-starting it even in patients who initially lacked response (ASCO abstract 1062).

The observational Demetra Study of 440 consecutive metastatic patients from 22 Italian centers found a response rate of 55%, and overall survival of 34 months among patients receiving trastuzumab. For 272 patients who progressed during treatment, 57% continued trastuzumab while 43% discontinued it, which produced significant survival differences at 3 years (36.6% vs 14.8%, respectively). Trastuzumab in combination with taxanes offered the best outcomes, Sylvie Menard, MD, reported.

Initial nonresponders doubled their median survival time from 12 to 24 months, Dr. Menard said.

“If you respond first-line, you have an incredible improvement in survival. But even if you do not respond initially, there is benefit in continuing trastuzumab, indicating that resistance to trastuzumab may be an inappropriate concept as new biological drugs are considered,” she suggested.

Dr. Menard recently led a retrospective study that aimed to reevaluate the role of HER2 in 1,795 newly diagnosed breast carcinomas.

They found that HER2 3+ status was associated with higher relapse rates in node-positive and node-negative subgroups, but HER2 2+ only in node positive. Dr. Menard’s group suggested that these tumors are distinct diseases with specific features and outcomes (Annals of Oncology online, June 9, 2008).

chrisy · 07-16-2009, 04:36 PM

Hi Jo,

I see that others have welcomed you warmly and with encouragement as well as science to give you hope. I will do so as well: Welcome. Sorry you had to be here, but how that you are here, we will continue to support you in whatever ways we can – with wisdom, real science, and love.

Now, the tough love part: HOPE is never a waste of time!

People worry about “false hope” but there is also “false despair”. When I feel myself slipping I remind myself how stupid I’ll feel if I live another 5, 10, 20 years but waste it all worrying about dying. I am realistic and know the statistics around my diagnosis – but am also aware that science is running very, very fast right now. Herceptin was a game-changer and the next one may be just around the corner. I’ve seen new therapies become available and save or extend people’s lives just as they thought they were out of options. I’ve seen people, including myself, have tumors disappear with new experimental drugs that are still in the pipeline. I’ve heard highly regarded researchers utter the word “cure” right out loud. Right out loud. They could hurry things up a bit but it still gives me hope.

Yes, too many people die of this horrid disease. We have lost dear friends and are right now holding others in loving prayers as they continue to struggle. I cry with them, for them, for myself.

We may or may not be brave (I don’t think of myself as brave) but we do what we can, what we must. We try to stay in our lives while fighting for them. We are determined not to defeated regardless of how the story ends. Your mom is way ahead of me - sending you out to be her advocate!

When I was in the place where your mom is now – just having received a shocking and unexpected diagnosis (death sentence), I was without hope. My primary physician, who we call “Dr. Doom” told us chances for recovery were slim and that I would get chemo and I wouldn't tolerate it well. I really thought, well, ok so I’ll just feel sicker and sicker and then I’ll die – and wondered why anyone would even bother to do the chemo.

My local oncologist we called “Dr. Cautiously Optimistic” – he refused to quote stats, saying instead that he was cautiously optimistic that I would respond well to treatment, and that overall good health was a very positive indicator.

He referred me for a second opinion to a top breast oncology doctor who we called “Dr. Hope” – who’s actual name IS Hope, but we called her that because that is what she offered us. She told us that while not curable, stage IV cancer IS treatable; that they are beginning to view it as a chronic disease to be managed much like diabetes; that Her2+ is the subject of a lot of research and there were many new treatments in the pipeline. She told us people are living well and for a lot longer, and if you respond to treatment you can extend that by a lot.

Dr. Doom was wrong. Dr. Cautiously Optimistic and Dr. Hope were right. Ok, Dr. Doom was right about the stats, but they are just stats. Slim chance is better than no chance.

You can read my history below; what isn’t updated is that I just last week celebrated a birthday that I was CERTAIN I would not see. Absolutely certain – I spent the whole week prior to my birthday looking out for speeding buses! I have a different perspective on birthdays now, and my goal is to have as many as I can.

My birthday wish for you and your mom is that you have hope and never think it’s a waste of time. You just never know….

chrisy · 07-16-2009, 04:51 PM

Jo,

Just wanted to add another comment, sometimes I just can't shut up...

Your mom does have a ton of options that can slap this down, possibly avoiding chemo for a long time.

Her cancer presents a "target rich environment" which in this sense means that there are several factors fueling the cancer - but there are specific therapies that can shut them down.

Targeted therapies are much more easily tolerated than traditional chemos which work by blasting, well, everything that is growing rapidly. That's really important because it will enable your mom to regain full strength.

There is also some evidence that attacking the hormone receptors (ER/PR) can activate Her2 and vice versa - so the fact that they will be shutting down all of these pathways is very good. The research leading to the "cure" comment I referred to in my other post was based on this approach of blocking ALL the growth pathways at the same time, thus giving the cancer no alternatives except to die.

Hang in there, ask a lot of questions, check out the research yourself. There's a lot going on out there, lots of people working hard on this stuff.

Chris

ElaineM · 07-16-2009, 09:16 PM

Hope, thinking positively and being as proactive as one can be are neccessary for long term survival. I was diagnosed in January, 1999. They told me I had 6 months to live in January, 2000. I am still here !!!!!!!
I want to be like the 57 year breast cancer survivor mentioned on this board a few days ago. I told the docs I want to live a long, long time and I will be showing up in their offices until well past 90 to keep them busy---maybe even until I am 100 !!!!!

SoCalGal · 07-16-2009, 11:05 PM

I echo what Chris posted. HOPE rules! Plenty of it to go around...cancer, a death sentence? LIFE is the only guaranteed death sentence.
Fear...let it go and fight, fight, fight! You sound like a wonderful daughter

Jo40 · 07-17-2009, 05:42 AM

Thanks so much to all of you who responded to my plea/post yesterday. I actually do feel much better after reading about people beating the odds. Its hard to ignore statistics, which are terrifying. Real life stories of people beating the odds are what keeps everyone going, and these sites are a God-send for that.

I will try as hard as possible to keep hope alive. I pray for the day when the three-month mark arriving on the calendar, and knowing that scans are coming with it, won't be quite as frightening for my mother and the rest of it.

My mother gets her second PET scan etc in the beginning of September, and then celebrates her 64th birthday right after that. My only wish is to have her celebrate with a light heart. We know scans won't always be clean, but we're still aborbing the initial diagnosis, so a break in the action would be really nice.

Again, thanks to all of you brave women (and men) who take the time to make the site work and lift peoples' spirit and share your own stories. It makes all the difference.

Jo

juanita · 07-17-2009, 09:05 AM

sending prayers your way!

chrisy · 07-17-2009, 09:40 AM

Jo,
Glad to see you are tending a little spark of hopefulness.

Living scan to scan is no fun, for sure. And no matter how many times I do it...I still get what I call scanxiety or sometimes temporary inscanity around scan time.

Waiting for results after a scan is the worst part for me. I keep busy and try to not think about it at all until the time comes. That works for me most of the time, although it did backfire once when I set my scanxiety alarm for the time of my dr. appointment and when I showed up, my appt wasn't until the NEXT DAY! I had an immediate meltdown and was a basket case until then.

I guess what I'm saying is, it will always be scary to a degree, you just learn to live with it.

At our initial consultation with Dr. Hope, my husband asked her how could people ever learn to live with the horror of that diagnosis and all that it entails. She told him "you just do". And yes, she was right again...it's not easy but it is part of the ride.

Chris

Jackie07 · 07-17-2009, 04:54 PM

Jo,

The statistics you see are most likely the ones covering the time period before 2007 when Herceptin became widely available after FDA approval.

Please look up the 'long-time survivor' thread (use the 'search' button on this site) and also check out current researches reported on the Herceptin website and/or the PubMed database at the National Institute of Health website.

Cancer patient or not, no one knows how long we are going to stay in this world. An old preacher we know had made a statement when told about his 'skin cancer' being 'terminal': "We are all 'terminal'." It does not mean we should not try our best to 'live' each day and enjoy it the best way we can.

I can understand the shock you and your family are going through. It's going to be a tough journey and you all probably don't want to see your loved one suffer from the treatment. But modern day chemo and other drug treatment are well studied and well administered. With anit-nosea medicine and other available remedy, your Mother can undergo the treatment with minimum anguish and tolerable side effect.