On the cutting edge

No, this post is not about fashion.  Or the latest smart phone technology.  Despite the many guides to BlogHer popping up around the internet, like flowerpots in my neighbor’s yard, this post is not about who will be wearing what to what parties, how best to multitask with other conference participants online while sitting in the same room, or how to leverage your writing into a fulltime job. (Although now that you mention it, yes, I will be reading those during my downtime later today.)

This post is about being on a different cutting edge — the cutting edge of research. 

Since I was very young, I wanted to work at the cutting edge.  To be a scientist.  To explore space.  To travel to laboratories and conferences across the world and talk with colleagues.  To think deeply and to put concepts together that no one had ever done before in quite. that. way.  To push the edge of research just a little farther, in just a little different direction, and to make a small (like isotope small) but new contribution to understanding the universe in which we live.

In my plans, though, it was about devising experiments using my brains, not experimenting with medical treatments with my body.

Since my recurrence in April, I’ve been obsessed with the latest research, the latest hopes, the latest drugs and hopes for a cure for my inflammatory breast cancer.  I’ve read the articles.  I’ve parsed the studies.  I’ve talked to oncologists here and specialists in New York at one of the premier cancer centers in the world – Memorial Sloan Kettering.  At Sloan Kettering, I met an oncologist I respected deeply (from his work on IBC), a junior doctor doing fascinating research (on mothers diagnosed with cancer during or shortly after pregnancy), and we went over the latest studies that showed new hope from a drug combo still in development.

On the cutting edge.

Avastin was hailed in 2008 as an amazing new drug, the first shown to postpone the recurrence of cancer when combined with more traditional chemotherapy.  Avastin took a different approach, and so it could be combined with the chemos that kill cells as they divide.  (Chemos kill all cells, remember.  Since cancer (and hair) cells divide fastest, they are killed fastest.  Chemo works by trying to kill you.  Since the cancer cells divide faster than cells in your lungs (for example), cancer cells are killed just a wee bit faster than you are.  This is why chemo is so hard to tolerate.  It kills the cancer cells fastest, but it also kills cells trying to grow hair (hence the baldness), repair your stomach lining (hence the nausea and vomiting), and repair your body from everyday wear and tear.)

Avastin was hailed as a near miracle drug, as it starved the cancer cells, aggregated into tumors, of the blood that they needed to grow.  In early studies, it nearly doubled the progression-free-survival time — the time that the cancer survivor could live her “new normal” life without returning to active treatment, and the specialist I met with was cautiously optomistic about its potential.  A number of studies were due to report out soon, he said, and he had just returned from ASCO, where he heard about encouraging news about progression-free-survival time from the researchers involved.  He would recommend that my oncologist add Avastin to my treatment in hopes of pushing progression-free-survival — giving me more time to be “strong mommy” to my little boys.

I pushed back.  I wanted hope, I said.  I wanted progression-free-survival, I did, but didn’t the latest studies also show no difference in lifetime expectancy?  Didn’t they show that, quality of life aside, there was no difference in quantity of life?

Yes.  This was true, he said.  But this was a step.  A step in treatment, and it held promise for people with metastatic cancer, he said, and locally metastatic disease like mine by extention.  We went back and forth over that table discussing pros and cons, and came away satisfied that this oncologist really knew his stuff — and he does, he does — and he recommended Avastin.

We came away from that appointment jubilent, celebrating with a fancy Italian dinner at the restauraunt next door, wondering how many patients had celebrated good news there before us, lifting our glasses ($5 for a diet soda? New York is crazy!) to the new hope that it held.

I meant to blog about it.  I did.  But it was too personal.  Too raw.  Too critical to my treatment to open up to the internets for examination.  So I didn’t “get around to it.”  I told myself that I was just too busy to write the post, that there were too many pictures (Susan happily pointing to the building sign; C lounging on the comfy rest in the elevator; the chandelier and ’50s decor in the lobby) to integrate, that it would be a great post to write later … but I just didn’t do it.

And then, yesterday, an advisory committee to the FDA reviewed the reports from the new trials, held an open hearing, and stated unanimouslythe risks and side effects of Avastin outweighed its benefits when used alongside a chemotherapy drug.”

— Aside: thanks to Liz Szabo of USA Today for tweeting this news, even before it made it into a link on their site

At the end of the day, the results were in.  The panel urged the FDA to revoke approval of Avastin for breast cancer treatment.  The promising benefits of the early studies were not borne out in later studies, and the drug that yesterday was thought to be so promising for the future is no longer being hailed as such.  In these larger studies, of thousands of patients, the progression-free-survival time had not the 5 month increase shown by the first studies, but only one to three months, depending on the study.  And one to three months, said the panel, was not worth the side effects.  Side effects demonstrated in the new studies include significant neurological problems including strokes, bleeding, hypertension, and the like.  These “side effects” are damaging to one’s quality of life overall, making it not worth the extra one to three months that this $88,000 drug (unsubsidized cost) may offer.

The FDA will likely follow the panel’s recommendation.  Doctors will only be able to prescribe it “off label” for breast cancer, which means insurance companies will not reimburse for its use.  The promise that the cancer communities had hoped for has been dashed.

But this is the way that research works, I must remember.  There are breakthroughs, and then there are follow up studies.  Science is not based on hope or miracles, but testing and proof.  Studies must be repeatable with consistent results.  That’s what we learn in science, and why the scientific method that your children are learning is so very, very important.  Science is not magical thinking.  Science is irrefutable.  And if one result is not repeatable, it’s not science.  It’s just luck. 

We need more than luck.  Since the studies now show that this drug will not help patients significantly more than it harms them, the panel is making the right decision.  The oncologists are being given good, science-based guidance.  My oncologist will not recommend the Avastin when I meet with her the week before BlogHer.  And when I come home, I will take a single chemotherapy pill each morning and evening, and not supplement it with this drug, Avastin, for which we held out such hope.

26 Responses to On the cutting edge

  1. @chemo_babe says:

    i am so sorry about this disappointment. i am holding out hope that the science progresses quickly so you can get an effective treatment to supplement your chemo.

    would it be too much for me to point out a bright side? at least you didn’t take avastin and contend with all the harsh side effects before they found out its ineffectiveness. my brother took it as part of a trial for his cancer, so i am interested to learn this news. i will have to check out to see if it has been found ineffective for other cancers as well.

    • whymommy says:

      Exactly! I should have led with that. The side effects are just starting to become well-documented. So good.

      There has been NO CHANGE in the recommendations for other cancers at this time.

  2. Susan says:

    Here’s hoping the continuing science will move ahead into a new area of hope. And here’s to you, sending out some more good vibes from the computer to help you wrap up in good wishes as you move along with your treatment and all its physical and emotional ups and downs.

  3. When I read about the recall, I thought of you. Now reading your post about what you had not written about regarding Avastin, I wonder if I might not have the 6th Sense.

  4. Elaine says:

    How can science be so simultaneously uplifting and depressing? Hopefully the next break-through will be the one. Or we can figure out what is causing all this in the first place, and start eliminating risks.

  5. jodifur says:

    I’m so sorry. I can’t even imagine the disappointment you feel.

  6. Cheryl says:

    I have such a hard time with this. My mom was one of the people who took Avastin for metastatic Breast cancer and I know it gave her a longer life. None of the other drugs were working and when she took the Avastin, the tumors stopped growing and became smaller, some dissappeared altogether. It worked for 13 months before the tumors started growing again….amazing how fast they learn to adapt. But that extra 13 months made a difference in a little boy remembering his nana (he was 3 1/2 when she died). She was monitored for the side effects and did not have them. To me Avastin was a true blessing.

    • whymommy says:

      Wow. 13 months. That’s awesome. And yes, that time when littles are little is so critical.

      And there are so many other critical times too of course — making the need for these drugs so very important.

      There was one survivor who testified at the FDA hearing that Avastin gave her her life back — she even golfs today! If I had been there (the hearing was nearby, and I wanted to go), I would have so taken hope from this, and tried a hail mary anyway.

      But the science is there to help us make these decisions, and apparently it doesn’t work for everyone.

      May it work for some people? Sure, and I suspect that in the next few years science will show WHO it works for, based on genetic testing and molecular markers. But for the rest of us, it may do nothing. WE JUST DON’T KNOW. And that is truly awful.

      I’m so sorry for your loss.

  7. allison says:

    I can’t imagine the disappointment, for the researchers who must have felt such elation, and for you on the cancer front lines as someone this drug won’t be helping. I find it amazing (and yet not surprising) that you can still look at this like a scientist.

  8. Tamara says:

    I read the reports on Avastin early yesterday morning and I thought of you. I don’t know you but have seen your tweets.

    My heart goes out to you, and I hope you find some strength in knowing people that you have never met are pulling for you and care. Hoping that you hear some good news really soon!

    Sending you a big virtual HUG!

    Tamra

  9. Robin says:

    Let’s hope the current findings help scientists to tweak Avastin so that it can be effective for IBC as well. And ASAP>

  10. marty says:

    And so Momma will not be taking it anymore either.

    Sigh.

  11. magpie says:

    I’ve been wondering about your Sloan Kettering consult – thanks for writing this post. I’m sorry that Avastin isn’t going to be in – but with luck and good science, something else will step into its place.

  12. Wow, how incredibly disappointing for the community and the hope that this could have been the drug that might have been so helpful to so many. Do you think that it was your knowledge of the scientific process or just plain human instinct that made you say no thanks to Avastin as part of your plan for progression-free-survival? Whatever it was, you are amazing and here’s hoping that there soon there will be another drug that will be a better solution in the fight against cancer. ((hugs))

  13. Kate @ upsidebackwards says:

    Susan, I’m so sorry for your disappointment. This whole thing really is a rollercoaster, isn’t it? I hope the next “up” is followed by yet another, and another…
    I am grateful, though, that research has saved you from what sound like pretty awful side-effects, for little or no benefit. We keep hoping and praying for more and better research, and this is just that. You can bet that the researchers are incredibly disappointed, too, and are already working on the next line of attack, the next great hope, the next “miracle drug”.
    Meanwhile, I’m going to go and kick something for you, and scream a little bit. Big hugs!

  14. Pgoodness says:

    Damn, I’m sorry this drug isn’t going to be part of your treatment, but when it doesn’t do what we hope for quality of life, I guess it’s better.

    Also, you are wicked smart and strong.

  15. NYFriend says:

    I know you are not looking for pity or anything of the sort, but man oh man I feel for you. This sucks.

    I really hope chemo in a pill is easier on you than the chemo through the IV line was.

    Wishing you a smooth treatment, a speedy recovery and wonderful living.

    Big hugs, my fellow scientist and dear friend. Your optimism, confidence and strength are inspiring.

  16. Niksmom says:

    Susan, I am so sorry for the disappointment but grateful that you didn’t have to take the drug to learn first-hand about the side effects.

    Though I know science is the answer, I’m still praying for that miracle. You just never know, right? I can’t wait to finally get to meet you at BlogHer.🙂

    • whymommy says:

      Thank you. I’m praying too. I know that science and God are not exclusive — in my view, one simply explains the rules the other has set in place!

  17. […] Lahdeedah, who just walked the Avon 2 day walk; […]

  18. Miss Britt says:

    I’m amazed at how rationally you seem to be handling this news. I guess it’s your faith in science.

    I think I’d be trying to wish harder.

  19. Andrea says:

    Saw this article & instantly thought of you. If this is true, this is what I was (am) afraid of.😦

    Praying for you~ Andrea

    http://www.telegraph.co.uk/health/healthnews/7948878/US-breast-cancer-drug-decision-marks-start-of-death-panels.html

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