Am I the only cynic re drug companies and cancer?

Just read the following from a Google alert:

June 4 (Bloomberg) -- Onyx Pharmaceuticals Inc. and Bayer AG said a study found their Nexavar drug is the first to help people live longer with liver cancer, driving Onyx's shares up as much as 9.8 percent. Those who took Nexavar in the trial lived a median time of 10.7 months compared with 7.9 months for patients on a placebo, according to research presented at the American Society of Clinical Oncology meeting in Chicago. The difference meant patients lived 44 percent longer, researchers said.

Does this hype annoy anyone else out there besides me? People who know I have cancer will tell me about these announcements with great excitment--"I hear there's a new drug that cures cancer," they'll say. Most people who know about herceptin and don't have breast cancer, think it's a cure because of the way the news is presented. And that--in my opinion--makes it more difficult to actually get cures. I particuarly hate the "44 percent longer" statistic. The reality is: less than three months more of life, and at what cost? I am a cynic, I know, but it would help to know that others out there agree, at least a little bit. I feel very lonely and angry at times, and particularly now, after Sandy's death. Like everyone else on this board, I've done my share of crying this weekend--and admittedly, mourning my own future, and hoping for something that is not incremental, but a cure.

[tousled1]

Grace,

I'm with you 100% What gets me now is when I see people they say to me "you're cured - you don't have cancer anymore." I may be NED right now but that's about it.

[saleboat]

I understand your frustration.

To put it into context, there have been over 100 clinical studies of treatments for liver cancer and none have even come close to this result, which as you note, is modest at best.

Jen

[Lala]

Consider the source is what I always say.
Your post contains an article headline form Bloomberg; that is a trade paper and service for those in the financial markets. I can understand the need for articles of this kind. This gives much needed news to shareholders and financial advisors. Bloomberg news is a leader in financial news and usually reports are very accurate. I was excited this morning when my husband called me with the headline news from Bloomberg about Tykerb and Xeloda in brain mets.

While I can certainly understand your position, I personally have a different view. I look at every article on cancer related drugs and every trial as a step forward in this fight against cancer. I have learned it's up to us who live with cancer to educate those that cross our path. I cherish everyday, I am thankful for the drugs I am on. I often think of the ladies that never had the chance to be on Herceptin or Tykerb. I think of all of my stage 4 friends. I miss my friends that has passed; I honor their memory by living to the fullest each day.

This weekend I celebrated Survivors day by painting a tile to be placed on the wall of a new cancer center being built locally.

The words I painted on my tile are the words many live by 'Hope Lives'<O</O

[Adriana Mangus]

Gracie: I totally undersand your feeling, am dissapointed, angry and scared at the same time. We really do not know what these companies are doing on "our behalf". Since you live in New York, am sure you read about the huge bonuses that the CEO's of these companies award to themselves. Why? They are certainly not saving lives. I am with you, I feel your pain. I'am at work and can hardly contain my tears, I still have at least another 45 minutes before lunch time.

Sending you positive vibes and much love, Gracie.

[Andrea Barnett Budin]

I just LOVE that statement. It is so right on. Fear will defeat you in your struggle. Believe me, I too have my moments of cynicism, disillusionment, frustration, exasperation, anger and yes, even, mourning for my future. How much time do I have here? My prognosis is ugly. The stats suck.

But I KNOW that such thoughts evoke images and emotions to match -- and I wish more than that for myself. We all deserve more than that. We have to allow those thoughts to be experienced, and vented, and then we must move on to seeing our blessings. I have a wonderful huband (most days), two great daughters (most days) and 5 incredible grandchildren who've arrived since I was first dx in '95. 4th stage is overwhelming for starters especially. 2 out of 18 nodes. I wanted 0. I had always thought I wouldn't want a mastectomy, to give up a breast (as they come in pairs, and leave you lopsided if one is amputated). From the momet I heard cancer my words were GET IT OUT. DO WHATEVER YOU HAVE TO. I WANT TO LIVE. I opted for tram flap reconstruction. Or rather it opted for me. I wanted some kind of breast, and this was my only way to go. 9cm tumor, going wide around the margins, left a giant circle, taking skin and all. A port. 4 Adria/8 CMF over 8 mnths. Thought I was done. Lived in joy and serenity from the getgo -- KNOWING I was calling my desired destiny to me. That we have the power to heal ourselves, talk to our bodies and instruct it to be well. 1 yr of flushing my port mnthly and I decided to let it go. I was never going to have ca again.

'98 I questioned my ev 3 mnth comprehensive bld tests showing "A VERY SLIGHT, VERY SLIGHT, I WOULDN'T WORRY ABOUT IT" report on the phone -- 3 times (over 6+ mnths). Well, I am worried!, my Inner Voice told me to say. It then prompted, Can I have a liver sonogram? Wrong verbiage but doc said I GUESS WE CAN SUBSTANTIATE THAT. You want an abdominal sono. Okay. Radiol said, I'm sorry but I have to send you for a CT scan. I can't be sure what I'm looking at here. I'm sorry. CT showed multiple lesions. Slightly tricky CT guided biop revealed MALIGNANT. If I'd waited, God knows what. Every single day counts w/ca! We all know that! For me, Herceptin has saved my life. And I have met Dennis Slamon and hugged him and thanked him. He was as elated as my husband Paul and I were -- seeing the fruits of his labor! Saw Pegram too! What a joy. It was like an Elvis encounter...

So we're all proactive, involved in our own wellness. On top of our case, ev step of the way. It's a full time job. Ev day we must monitor our thoughts, weed out the fears, doubts and worries. Feel them. Talk them out. And move to our spiritual core. I am STABLE (my most favorite word in the English language). I live to hear it w/ea scan or test. I meditate daily. I have read a lot of bks about spirituality. I have grwn enormously since '95 in wondrous ways, that would nothave occurred had it not been for cancer.

Midst 9 mnths of Taxotere, The Freight Train drug, that is highly aggressive and tailor-made for highly aggressive Her2+ ca, I sunk to the bottom of the well. I was down and out. In pain, enfeebled. I kept a bk by the toilet which I frequented ridiculously often. Diarrhea diva. Then this 1 bk I read, w/3 pgs to journal after ea 3 pg chapter, prompted me to write my PRAYER FOR SURVIVAL. It just gushed up and out of me. I have sent it to those at rock bottom. They say it touches them, makes them cry and feel inspired. They keep it on their night table. I NOW "know" that we are each far more than a mind and a body (our temple). We are each a Soul. It is full of eons of wisdom. It is a fragment of its divine Source and therefore we are all in possession of a Godself. We are each sacred beings. I connect with my Essence, my Spirit, when I find myself low. It raises me up. It is my Higher Self. My True Self. It is full of love, compassion, kindness, generosity, caring, gratitude and awe. The world is so beautiful.

EVERY THOUGHT IS HEARD BY YOUR BODY. And, by the Universe itself. Each responds IN KIND. If the energy of your thoughts and visions are full of negativity -- that is what you will attract back from the Universe. If the energy of your mental meanderings and images are full of positivity -- you will call your desired destiny to you, rather than what you dread most. It is your choice. You have been granted personal EMPOWERMENT to be the master of your fate. The power of your thoughts, to heal, to manifest your dreams, is miraculous. It can create astounding outcomes. Believe in your power. Own it. Alter predestination with the power you were given as your birthright. That's what I've learned since cancer. As you each cross my path, I feel compelled to share this with you. Go deep within yourself and seek to connect with your Spirit. It guides and protects you. Send THE RIGHT message out into the Universe to attract what you want, versus what you fear. Consciously choose to be a miracle. To become STABLE and to stay healthy and well. Reach for your dream with the passion of an Olympic gold medalist. With that kind of fervent determination. I am sending loving, healing energy to all my Soul Sisters who I admire beyond words to express... ANDI

YES -- FEAR IS A REACTION. COURAGE IS A DECISION! Was it Eleanor Roosevelt who say YOU MUST DO THE THING YOU THINK YOU CANNOT DO. And someone else said THE BRAVEST ARE SURELY THOSE WHO HAVE THE CLEAREST VISION OF WHAT IS BEFORE THEM...AND YET...GO OUT TO MEET IT. God bless...

[StephN]

Dear Grace -
I knew posting about Sandy's passing would have the effect of putting mortality square in the face of some here, and I tried to word a horrible post as gently as I could. Grieve in your own way.

What I want to respond to you is that without those few months of "extra" survival, our drugs would not get approval to continue trials. The FDA has a big grip on all that and needs what they call solid proof that there is reason to go forward with a drug. Take the example of the prostrate cancer drug PROVENGE, that is in trial and developed right here in Seattle. The maker Dendreon is less than 2 blocks from our store and many of the employees are our customers. So, we have been getting all the inside dope on the FDA slowing their approval process and the stock price dive that resulted. The backlash was huge.

If you ever have the chance to read the book "The Making of Herceptin" you will understand just how close we are to never getting this drug out of a tiny lab and into some real development and use. When I was diagnosed stage IV this site did not exist. I had no one to look to except stage IV women at my cancer center and most were not doing well. I was desperate to find some HOPE somewhere! When I read that book and learned that there actually WERE some complete responses in women as sick as I was I had something concrete to hang my hope on. I felt encouraged to go buy some new hats to cover my again bald head! A small thing, but it was BIG for me at that time.

I was number 6 enrolled in a new trial for hard to treat aggressive mets. There was no data. I felt like I was stepping into an abyss of uncertainty. Herceptin was still new and I only got it then being stage IV. Really I was in God's hands and He was kind to me. In my case those few months turned into over 5 years so far.

It is not a perfect system, but without trials and people like me who get a chance to set a precedent, where would we all be?? I have learned to put the blinders on as far as the business side of the drug company world goes, otherwise I would spend too much valuable energy very annoyed by all that.

[Andrea Barnett Budin]

Steph your post re Sandy's passing was beautifully worded! I noted that right off. And though I did not know her, I have read her green shoes tale and immediately loved her Spirit. Again, yr last post is so right. I have, in the last 2 yrs, lost an uncommonly large # of dear, beloved friends. I went into a tailspin, coupled w/losing my lifeline, my onc's nurse who is beyond wonderful but has gone into palliative med to be nearer to her mom. She left me her home phone #, feeling so guilty leaving me and all of us behind. That's the kind of person she is -- good to the core. Anyway, my usual cheery self was being choked off.

Getting Herceptin at the cancer center, the social worker noticed I wasn't myself. I didn't think it showed. What's going on?, she asked off-handedly, pulling up a chair to my recliner. Suddenly I became conscious of it all accumulating over the last few yrs and poured my heart out, slightly amazed. I cried, sobbed and wailed for hrs at the time of each passing, but thought I was over it, w/occasional thoughts of missing and loving these people and experiencing a profound sense of loss, then I'd move on. But I guess I was repressing a whole bunch of emotion still.

Kathy suggested that I make a list. I CAN DO THAT. I am the President of Listmakers Anonymous. I wrote each name down on a pretty piece of paper when I got home. The list was way longer than I had realized. It startled me. I began to see how overwhelming it all was. No wonder it had impacted me so, so much deeper than I'd realized. I keep my list by my bedside. Kathy suggested I touch a name and close my eyes and think of that person for a bit. Then to say a prayer thanking God for having them in my life (and feeling what that evokes in me). Allowing it to be experienced.

I believe the Soul continues on, in the Spiritual Realm. Death is not the end of our story, I know. I will see those who have passed on to the next dimension again. In time. When I am ready, and not before. I go to each name on the list, working my way down slowly, and it is rather soothing. I make contact with each person. Sometimes during the day I look up and speak to this friend and that one. I smile and I tell them I really love you. (Not past tense.) And, I really miss you. I wish I could talk to you. But, I guess that's what I'm doing right now. I felt that close to them that I can imagine what they would say in response. I can feel their hand on my heart. Surely they have left footprints there. We are forever bonded.

Maybe those of you grieving Sandy could make a list of what you loved about her. Her zest for Life. Her humor. Her gentleness and generosity. Her grace. Her willingness to share and give of herself, all of which I've learned from reviewing her past postings, signatue and bio yesterday. As it's been said, you can honor her best by cherishing each day! By determining NOT to relinquish a single one to debilitating sadness. Embrace the day. Say I love you ten times more than you usually do, as you go about your day. I find I do this with veritable strangers, if involved in a lovely conversation. And I get it right back. I love you too. Hug ten times more than you usually do. Hugs and laughter are very therapeutic. Stay on course. You don't want to make yourself sick. Be good to yourself. You deserve that. I am sending loving energy to all my Soul Sisters... ANDI

[Andrea Barnett Budin]

Steph your post re Sandy's passing was beautifully worded! I noted that right off. And though I did not know her, I have read her green shoes tale and immediately loved her Spirit. Again, yr last post is so right. I have, in the last 2 yrs, lost an uncommonly large # of dear, beloved friends. I went into a tailspin, coupled w/losing my lifeline, my onc's nurse who is beyond wonderful but has gone into palliative med to be nearer to her mom. She left me her home phone #, feeling so guilty leaving me and all of us behind. That's the kind of person she is -- good to the core. Anyway, my usual cheery self was being choked off.

Getting Herceptin at the cancer center, the social worker noticed I wasn't myself. I didn't think it showed. What's going on?, she asked off-handedly, pulling up a chair to my recliner. Suddenly I became conscious of it all accumulating over the last few yrs and poured my heart out, slightly amazed. I cried, sobbed and wailed for hrs at the time of each passing, but thought I was over it, w/occasional thoughts of missing and loving these people and experiencing a profound sense of loss, then I'd move on. But I guess I was repressing a whole bunch of emotion still.

Kathy suggested that I make a list. I CAN DO THAT. I am the President of Listmakers Anonymous. I wrote each name down on a pretty piece of paper when I got home. The list was way longer than I had realized. It startled me. I began to see how overwhelming it all was. No wonder it had impacted me so, so much deeper than I'd realized. I keep my list by my bedside. Kathy suggested I touch a name and close my eyes and think of that person for a bit. Then to say a prayer thanking God for having them in my life (and feeling what that evokes in me). Allowing it to be experienced.

I believe the Soul continues on, in the Spiritual Realm. Death is not the end of our story, I know. I will see those who have passed on to the next dimension again. In time. When I am ready, and not before. I go to each name on the list, working my way down slowly, and it is rather soothing. I make contact with each person. Sometimes during the day I look up and speak to this friend and that one. I smile and I tell them I really love you. (Not past tense.) And, I really miss you. I wish I could talk to you. But, I guess that's what I'm doing right now. I felt that close to them that I can imagine what they would say in response. I can feel their hand on my heart. Surely they have left footprints there. We are forever bonded.

Maybe those of you grieving Sandy could make a list of what you loved about her. Her zest for Life. Her humor. Her gentleness and generosity. Her grace. Her willingness to share and give of herself, all of which I've learned from reviewing her past postings, signatue and bio yesterday. As it's been said, you can honor her best by cherishing each day! By determining NOT to relinquish a single one to debilitating sadness. Embrace the day. Say I love you ten times more than you usually do, as you go about your day. I find I do this with veritable strangers, if involved in a lovely conversation. And I get it right back. I love you too. Hug ten times more than you usually do. Hugs and laughter are very therapeutic. Stay on course. You don't want to make yourself sick. Be good to yourself. You deserve that. I am sending loving energy to all my Soul Sisters... ANDI

[Andrea Barnett Budin]

I tried to post the above an hr ago. Somehow got knocked off Her2 site. Tried to hit it on my Favorites list. It stalled. Then I got ORGASM TIPS page from the Web! Midst our grieving, someone was sent to make us all remember laughter. I re-tried numerous times and kept getting back to Orgasms. Then when I finally got back on the site, 1 hr later, w/my posting which I'd copied and pasted elsewhere sensing (from my Inner Voice) that trouble was brewing and that my SUBMIT -- didn't -- I got a refusal, saying we can only post every 30 seconds. Weird, no? Hope this made you smile. From Her2 support to orgasms... A message from the Universe?

[Adriana Mangus]

Dear Stephanie:

You have inspired me...

You are right, were would all of us be without them?

I do not want to add more worries to my life, I think it's better to let the scientists + pharmaceutical companies worry about the developement of new drugs. A lot of money is at stake when a new drug is being developed, we must take that into account as well. Just to get it off the ground it's a huge task for the labs, scientists, etc..

More often than not, we tend to complain because we want a "miracle", there is no time for us to waste, but I know that it takes a long time to get approval for new medicines; the FDA it's not an easy Agency to deal with and we must believe that the FDA is looking for what's best for us.

Where can I obtain a copy of the "Making of Herceptin"

[Andrea Barnett Budin]

Dx in '95. Knew nothing about bc but would do mammog and mnthly self-exam lookingfor a pea, a marble. Noticed a general hardness in my breast and questioned it. Moved annual up. You can read my signature for details. '98 when I found that I had liver mets (w/3 very slightly elevated liver enzyme bld tests over 6+ mnths) I asked for liver sonogram. They gave me abd sono and radiol apologized but sent me for CT scan, couldn't be sure what he was looking at. Multiple lesions in liver. Biop -- malig. My husband Paul and I had been reading everything we could get our hands on re bc. Aug '98, as dx, I asked for a HER2 test. All very new. Herceptin in clinical trials. Women being dx w/3 mnths to live and Her2+ denied drug. There was a lottery! If you were lucky you could get the limited supply of the drug. Otherwise...

I tried to get into a trial but failed because of Adria, disqualified. Needed to get on chemo fast, I was told. Subsequent tests showed fast progression in wks. LUCKY I questioned this consistently slightly elevated liver enz thing. Ev day counts w/ca. It doubles and redoubles and so on, exponentially... My Her2 was totally out of control. BUT FDA fast-tracked the drug. Made the news around Sep 28, '98. I was put on Taxotere, considering it to be the most aggressive weapon they had in their arsenal for a highly aggressive ca in Sept, failing to qualify for the trial. Turns out, I LUCKED OUT again. Started Herceptin after first CT scans to be sure Taxotere was working. Tk 9 mnths but it did the job. Radiol saw only the dead remains of tumors, cyst-like, filled w/fluid. No more Taxotere, as I was a mess from it, w/ev possible side effect, much pain, black falling off nails, burning soles, faucet of drippy water from eyes and nose, could barely speak. No reason to believe Herceptin can't keep you STABLE, oncs said. So, been on Herceptin since '98. Would not give it up any more than if I were taking insulin for diabetes. It keeps my defective gene from overexpressing itself. Talk about being in the right place at the right time. I thank God ev day, for the gift of ea day. Sending loving energy to all... ANDI

[R.B.]

The drugs industry is the usual mix of human greatness aspiration mixed up with money, status, need for approbation, the need to hold down a job, the way organisations work, the way we respond as individuals etc.

There are some wondrous products, but I suspect future generations whilst admiring some, will look back (if we last that long) at others with a mixture of amusement and horror at some in the same way as we would consider mercury, arsenic, hanging some radio active material round the male particulars to assist with fertility, etc (which I am sure equally were prescribed in the belief they were the best available at the time).

For me the biggest issue is that there is no perceived profit in trying to research the cause of this huge increase in western conditions. If western conditions continue increasing at the present rate, and the variety of treatments and costs continue increasing how will nations be able to afford to treat their citizens. How will society cope with the wider consequences illness brings. How will the untreated or those receiving "second rate" treatments feel.....

So often in trails on omega three I see "this shows promise more research required" and the follow up does not seem to materialise. And it will not until governments fund research and the public through the courts and supermarkets demand change.

How long did it take before it was accepted that smoking was not a healthy activity. Trans fats were good for you until recently - and when did companies and government start shifting seriously in terms of trans fats - I suspect when a several million dollar legal suit was won in California. And always in the back ground there were a few largely ignored who were warning smoking and trans fats were bad, but it suited a whole range of people to ignore their warnings for a long time.

I hover between cynicism born of my observation of myself and experiences in dealing with large organisations, seeing "disasters" unfold where it was convenient to ignore an obvious truth, a series of un-intentioned "kneejerk" reactions without ill-will or malice for protection of self job or ego, indifference or lack of understanding, powerlessness..........., and on the other side the hope that we can do better, a feeling born of inspiration by others.

Thank you all for the many different responses and views, and I do want to emphasize that I am not disputing the help herceptin has given to many women (and many other drugs as well), but what still makes me angry, and will continue to make me angry, is the way companies use statistics to put their own slant on a story, usually for profit (or glory). When I was in Grad School I received a wonderful opportunity ($100 a day, which back then was a fortune) to write the Minimum Competencies Report, a project which was jointly funded by the City University of New York, McGraw Hill, and the College Board, two of them non-profits. I was handed stacks of computer printout sheets and told to make the report read in a certain way. I'm ashamed to say I did just that (but never again). You can make statistics mean anything you want and to say that those on Nexavar lived 44% longer just rots my socks (and now you all know just how old I am).

Stephanie--you did a lovely job of informing everyone about Sandy's death. And I'm glad you were the one to tell us--her good friend--as I was thinking about her every day. It was very sad for all of us and there's no way to mitigate the pain when someone we care for dies. She was a lovely, hopeful person, and I'm sure she welcomed the extra time that herceptin gave her.

[Jean]

Dear Steph,
Thank you for sharing your story....it was very calming during very upsetting times on the board. We are all still rocking from Sandy's passing. You are a
brave strong and extremely inspirational person.

As a wise woman on the board once told me " this site cuts both ways"
we derive great wisdom from it and also at times great pain.

We must remember each day we get a little bit closer.

Jean

[Lani]

UK Body Backs "Money-Back" Deal on J&J Cancer Drug


LONDON (Reuters) Jun 04 - British healthcare cost-effectiveness watchdog NICE has reversed an earlier ruling refusing to endorse Johnson & Johnson's cancer drug Velcade (bortezomib) for use on the state health service after the maker offered a "money-back" deal.

The National Institute for Health and Clinical Excellence (NICE) said on Monday it was now recommending the 25,000 pounds-a-year ($49,450) drug for the treatment of multiple myeloma.

Patients who respond well to treatment will be kept on the drug but those showing a minimal or no response will be taken off treatment and the drug's costs refunded by Janssen-Cilag, the name under which J&J pharmaceuticals operates outside the United States.

[Jen]

This is just my opinion but I think that more money should be invested in finding a CURE rather then just developing new chemotherapy drugs to TREAT cancer.

[AlaskaAngel]

Obviously you are not the only cynic, Grace. The numbers do count. Even though I'm triple positive, I do understand that trastuzumab does not work for the majority of those with bc, or even for the majority of those who are HER2 positive, and that even for those for whom it does work, most of the time eventually it does not work.

With all the hype, it is hard to convince the general public that anyone and everyone with HER2 bc hasn't been "cured" by trastzumab.

AlaskaAngel

[Brenda_D]

I know what the OP means when looking at "44%" and then finding that it's really meaning a few months.
I was so happy to learn about Herceptin and how it's viewed as a "wonder drug" for Her2 positives. Then I looked at stats and find for metastatic bc, the benefit is months.
"Patients treated with chemotherapy plus trastuzumab had an overall survival (OS) advantage as compared with those receiving chemotherapy alone (25.1 months vs. 20.3 months, P = .05). "
But! I also read here and elsewhere about ladies that have received much more time, even years. So that gives me some faith and reason to take the Herceptin.
I also look toward Tykerb as something I can try later if need be.
But looking at stats (and yes I know stats don't mean squat smetimes), and seeing that it's only giving an average of maybe 5 to 6 months longer than not using it. It does make your world crash a little.
I am very saddened about Sandy's passing, but I will continue to read this forum, and yes, it is a mixed bag of both hope and sadness.
I used to read the BCmets site but had to quit because so many were passing that I became depressed reading there, and have to limit how often I visit the forum.
This disease really sucks.

[diannel]

Hi all: This is my first post, and I need advice. I was diagnosed with Right breast IDC 1cm. tumor, had lumpectomy in July 2004. Er+PR+, Her2 neg. Node Negative. Radiation, no chemo. On Arimidex.
Now, yearly mammogram of Left Breast May, 2007. 2cm. tumor. Had Lumpectomy 5/24/07. It is Er+, Pr neg. Her2 positive by FISH signal ratio 6.49. Node negative I am told it is a new primary tumor and not related to the tumor of 2004.
Also, I have a 2.2 cm. tumor in my Right kidney which needs to be surgically removed; I am told it is a primary tumor and unrelated to the breast cancer; the surgery was scheduled for tomorrow, but I have bronchitis, and am not considered a good surgical candidate until I get well, and quit coughing. (I think the general anesthesia on 5/24/07 allowed bacteria to gain access to my lungs.)
My oncologist wants me to do AC.. then Taxotere then Herceptin OR
TCH then Herceptin.
Here are my questions:
1. What kind of chemo should I have?
2. Is it OK to wait until after the kidney surgery in early July to start chemo?
My onc says I am not eligible for a clinical trial because of the kidney cancer.
Thanks,
Dianne L.