American Bedu Published in the New York Times

It gives me great pleasure to share with readers that a rebuttal which I wrote to a New York times editorial was published today in the paper.

 

The rebuttal I wrote is in response to the FDA decision to withdraw its approval for the drug Avastin to stage IV metastatic breast cancer patients.  I have been sharing my own journey with cancer to readers through my blog and for those not aware, I am a Stage IV cancer patient.  At present, Avastin is the only medication which has proven successful for slowing the growth and spread of my cancer and bringing quality back  to my life.  Prior to my Avastin treatments I underwent aggressive chemotherapy treatments which debilitated me and did not stop the growth of my cancer.

 

The jury remains out on whether Avastin will continue to be readily available to me and many others.  Genetech, the company which manufactures Avastin is challenging the FDA decision.  Avastin is also provided to individuals with other types of cancer but according to FDA studies, the benefits of Avastin to metastatic breast cancer patients are “minimal” and do not necessarily prolong life long enough to be of benefit!  Go figure THAT statement out…

 

There are side effects with Avastin such as high blood pressure and susceptibility to nosebleeds and some other effects too.  However these side effects are known and can be managed rather than cut off the only existing lifeline to Stage IV metastatic breast cancer patients.

 

The FDA should not have the right to determine life.  That should be God’s decision.

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12 Responses

  1. You are a true inspiration!
    Lovely ❤ Thank you Carol

  2. Carol,

    Congrats, you are now a certified literary-intellectual persona, and I will have to be more respectful – you and the grey lady are best friends.

    As to this idiotic decision, I agree with you 100%. It is the nanny state gone wild. Of course there are side effects and risks, but a person can made decisions far bettter than some FDA employee that knows nothing about the real world, much less each persons medical situation.

    Take care,

    Jay (from Salvador, Brazil)

  3. Great letter!

  4. This letter confuses me a bit. You state,” I have lived 2.5 years with breast cancer because of Avastin.” This implies that you have been taking Avastin for that entire period of time. However, I believe your recurrence was only diagnosed a year ago?

  5. Cancer diagnosis is always referred by the date of original diagnosis. It is not meant in any way to confuse or mislead anyone.

    However I am one of the individuals which is receiving benefits of Avastin and not only prolonged life, but a quality of life that I could not have under conventional chemotherapy treatments.

  6. Carol,

    Good for you–. Indeed you are an inspiration. You are totally amazing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  7. Kudos for you! You’re awesome (you already know that! 😉 )

    How about exploring alternative treatments? It worked for my FIL. He was trying 2 different kinds & we can’t know for sure which worked, but it helped reverse the disease.

  8. Thank you Riyadh Mom! You are pretty awesome too! (hugs) I will never forget our wonderful adventures to Haraj bin Qassim!

    I am on multiple forums and newslinks about metastatic breast cancer trying to keep as informed as possible.

  9. As a long term cancer survivor myself, I am aware that survivorship is referred to from the initial day of diagnosis. However, credit for a particular treatment can only be given from the time the treatment starts.

    Another note on Avastin, I believe that you have commented earlier that its side effects can be easily controlled. This may be true in your case and the cases that you are aware of. However, I know of several ovarian cancer patients who had serious side effects from Avastin (i.e., the bleeding that is mentioned on Avastin’s Web site) and have had to discontinue its use because of this.

    I don’t know enough about the issues regarding the FDA’s recent ruling to intelligently form an opinion; but I hope that you can continue to receive an effective treatment for your metastasis.

  10. @Anon – what type of cancer do you have and what treatment (if any) are you presently receiving?

    At present, Avastin is a last hope for many metastatic stage IV breast cancer patients. I do not believe that the drug or the resources for payment should be taken away from those for whom Avastin is known to work.

    Cancer treatment is not simply sitting nascent and waiting for the drugs to work. A patient needs to remain informed, proactive and willing to make changes in lifestyle and diet too.

    However I shudder in fear if Avastin is taken away from me. While I was on traditional chemotherapy treatments I had virtually no quality to my life. I could not be independent and incapable of even the simplest decisions. With Avastin, I am living on my own and even better, continue to receive test results that do not show the presence of new cancer cells.

  11. I was diagnosed with ovarian cancer almost 11 years ago. The standard first line treatment (surgery and carboplatin/taxol chemos) has kept me in remission since then. However, with ovarian cancer (as with breast cancer), recurrences after many years of remission are far from unheard of, so it would be foolish to believe that this is not a possibility for me at some point in the future.

    I agree that the US health care system has deep flaws, and I hope that you are able to be on a treatment regiment that works for you (whether that is staying on Avastin or some other treatment). It may be best if we agree to disagree on what the FDA should do in this circumstance, however.

  12. That is great to hear you have been in remission for 11 years and I hope that you do remain in remission for many many more years.

    I appreciate that we have been able to dialogue on the issue of Avastin, cancer, healthcare and FDA. It’s better to agree to disagree than have verbal disputes! (smile)

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