Friday, April 26, 2013

The Intolerable Gemzar

Boys and Girls, in the last episode of Breast Cancer?  But Doctor, I Hate Pink, I told you good news and bad news.

The good news was that my last scan showed a 50% reduction in tumor burden, holding off the inevitable for a time.  The bad news was it was Gemzar that did it.  While Gemzar is normally considered one of the easy chemos, I don't find it so, and it caused me some suffering.  My body rejects Gemzar, and I must say, it is  very odd for my body to reject anything with the word "gem" in it.

We were going to quit, but because of the good results, my doctor cut my dosage in half, and back on it I went.

Only, I didn't.   Because it is a myelosuppresive drug, (as are all chemos)  and my white cell count has still not recovered from the last one I had, weeks ago, I couldn't get it.  For some reason, this one does a number on my marrow and my "grans" stay steady at only 1.3.  Which makes me quite susceptible to infection (as well as understanding the decimal system.)

So my nurses have cancelled all my Gemzar appointments until I talk to the doctor.  So much for that.  I'm off chemo, however temporarily.   That, my friends, is a Bad Thing.

I worry that cancer is left to grow unfettered in my liver and once again, my dream of living for a year has become more fantasy than possibility.

So that's my health news.  I have five half written blog posts for you on various topics of cancer and candy,  and I will finish them and post them but I suddenly feel the urge to nest and have been doing many homey things, like scrapbook instead of blog.   (Not clean, God forbid.)

I wanted to tell you about an article in the New York Times that I was interviewed for:

Our Feel Good War on Breast Cancer

My part is at the end but truly, my opinion is sprinkled all throughout the piece and there is nothing I disagree with.  I spoke to Peggy for a while on the phone and while I'm sorry I brought up those old cancer fears in her, we were very sympatico when it came to this subject.  I hope you read it, learn from it and pass it along to your friends.  It's an important topic.



15 comments:

  1. Very important. Thank you, Ann. This information has got to get out and the pink thing has got to go! I'm sorry to hear about your white counts. Hoping you get to see the doctor soon and come up with a new plan of attack.

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    1. Send it to you friends. Most people don't even understand. And, thank you for the kind words.

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  2. Ann, I saw the Times article yesterday and Tweeted it. It *is* an important piece and Peggy did a great job and I was happy to see you were interviewed in it! I'm not happy to hear about the gear shifting on the Gemzar tho. I hope your doc has encouraging news the next time you see him.
    -Renn

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    1. Peggy did a fabulous job. Wish I could see it in person! I hope he has encouraging news too. He's a smart man he'll figure something out.

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  3. What about the tdm? Whatever the name is? Oh mainmast Dag nab it. Not giving up gonna keep praying for graduation day....hugs

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    1. TDM1 (now called Kadcyla) is also a chemo so you have to have a white count no matter what I get. I hope he figures out a way to get it up without my taking that drug.

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  4. Have you tried a Neulasta or Neupogen injection? These can raise white blood counts. (I assume you have tried it, but I thought I would double check.)

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  5. I don't have cancer, but read a huge chunk of your blog anyway after reading the article. I love your writing, such a crap hand you've been dealt and so much you have to deal with and yet you make it interesting and funny! I'm pulling for you to see your son's graduation.

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  6. I've just read the article and found it very interesting. I find it so frustrating that in general we are all being led to believe that early detection leads to early treatment, therefore preventing our breast cancers from metastasising and ultimately saving lives. We stage IV people know that this just isn't the case - this is happening to us not because we didn't find it early enough. Why - we don't know.

    So hoping your Dr comes up with something that can get your treatment moving again. It must be worrying having to stop everything for now but I'm sure he will come up with one of his plans shortly and will get the attack underway once again.

    Stay strong and thanks once again for the invaluable advice and help you give to us all. X

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  7. I have inflammatory breast cancer so I communicate with several women with liver mets and they are thrilled with the rapid results they are getting from the TDM-1. It may be that this new era holds the magic bullet you are looking for. I understand that your blood chemistry sucks and I hope that does not preclude Kadclya for you. I have two internet friends with advanced liver mets who are getting almost no side effects. Well, maybe they have side effects but comparatively speaking, they say that it has been a walk in the park. I hope you can whip your blood into shape and get to pumping the good stuff into your veins. My oncologist has three metsters on TDM-1 and she said she is amazed by the observable results.

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  8. I'm coming back from leukemia this time (previous breast cancer) so I know all about sucky white counts and platelets and hemoglobin. They would give me chemo anyway but I was inpatient at the hospital for weeks a a time during those treatments. Is that an option? In my case the cancer caused my low counts not the chemo so I don't know.

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  9. ugh. :( i hope your counts rebound soon. ❤ i don't want to be that a-hole who mentions supplements and stuff, because you know wayyyy more about your health and your disease than i do, but i was just curious as to what, if any, supplements you're using in addition to/instead of neulasta or other similar meds. i'm merely wondering, i promise i'm not going to go off on a rant re: holistic stuff. i, myself, don't use anything more than an adult (sweet and sour gummies, yum!) daily vitamin that has folic acid in it.

    take care of yourself, chickie! ❤

    signed:
    the random autistic (aspergers) girl who emailed you over a year ago to tell you how awesome you are. :)

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  10. Having been diagnosed myself at the age of 4, I sincerely offer my heartfelt sympathy for all you have suffered with those nightmarish migraines. And that stage IV cancer thing really sucks, too.

    From halfway across the country, there's not much I can offer. I can, however, help a little. This next payday I would like to send the bit of money we are able to put aside every two weeks into our son's college fund. Truthfully, I don't know if he'll ever even need it. Unlike your intelligent, ambitious, motivated boy, the only reason our high school junior gets up in the morning and goes to school is because he's figured out that's where they keep girls and football.

    Seriously, though, I found your blog via the NYTimes article, too, and have gained so much from it. A few years back my friend lost her beautiful 32 year old daughter to BC with liver mets. The first sign of trouble was the difficulty she was having nursing her youngest daughter. The injustice of this loathsome disease is simply breathtaking, and I think it's in the nature of most of us to rail in fury against injustice.

    You and your family will ever be in my thoughts.

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  11. Just saying I'm here reading, feeling, hoping, praying, wishing ... and knowing how important it is for you to fill your days with as much joy as you can pack in. So since I can't produce a cure out of thin air ... some bit of magic ... I'll continue to hope that collectively we can and otherwise, I wish you days full of joy.

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  12. It was a very nice article! Just want to say thank you for the information you have shared. Just continue writing this kind of post. Thanks.

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