The Hellhole

Monday, February 12, 2007

My dad's appointment with his oncologist was today and I went along as planned. I feel that I owe an update to everyone who called and e-mailed me asking for news, but I don't feel that I learned very much today. The short answer is: for every question that got a logical (if not entirely satsifactory) answer, other questions were raised. The longer answer follows.

Regarding my concerns about Sutent, the answer is that this drug is almost the proverbial "miracle drug" in treating renal cell carcinoma. Previously, the only known treatments were very debilitating and dangerous ["iridium" and "interferon" is what I believe the oncologist said, but I didn't write it down as my dad wasn't getting that], so given the alternatives and Sutent's results, the FDA fast-tracked the approval of Sutent. Pfizer has all those disclaimers up because, although they've had incredible, wonderful, substantial results, Sutent hasn't had enough measurable results over a long enough period to claim that it cures renal cell carcinoma.

I was fine with that - it's a logical answer I can understand, and many of the other questions I had were answered in a rational fashion, but even as I was feeling better about his oncologist and his proposed treatment, I was feeling worse about this office as a whole. After the consultation, it was like the Keystone Cops go to the doctor, I swear: "[Helly's dad] is here for his Sutent! No he isn't we haven't gotten the approval from Cigna yet! He's here for the injection to fight his anemia! No he isn't his blood is back to normal! He's here for his Zometa for his elevated calcium! No his calcium his normal he's here for bloodwork! [Helly's dad] needs to schedule his next chemo! No he doesn't he's not on chemo!" - and I'm thinking, "Holy crap, do NONE of you people know what he's here for? Wasn't there some compelling REASON that you made this appointment a week ago? If so, what was it? AAAARGH!"

Oh, but they still haven't started him on Sutent because they haven't received approval from his insurance company although they feel there will be no problems and the insurance company can't legally deny him treatment they can't do anything without approval so there is some red tape and whatnot to wander through, but we shouldn't worry. Yeah.

Also, everyone had me under the impression that Dad needed an IV session of Zometa as a consequence of his elevated calcium levels - I thought it was to flush his system while ensuring that he still got enough vitamins, minerals and nutrients. I was under this impression from the oncologist, his PA, his nurse, etc. The chick who handled Dad's IV promised me a pamphlet on Zometa and as we were making his follow-up appointments and leaving, she brought it to me. Guess what it's for? To treat bones when cancer metastasizes into the bones and/or marrow, which not only has that never been mentioned as a problem, two people have point-blank told us that Dad's renal cell carcinoma HAS NOT metastasized into the bones nor the lymph nodes. So why's he on that medication? I'd dearly love to know that myself.

On a more positive note, Dad actually expressed a willingness to ingest food if I got him what he was craving, and consequently we went to Up The Creek Fish Camp where he ate a very good lunch. After a tantrum which was not one of my best, but still quite impressive, he agreed to drink nutrition drinks of the Ensure/Boost variety if I could find him one that didn't taste "like Milk of Magnesia" so I bought him one of every flavor they had at Publix. He'll drink them and like them, or else I'll throw a really bad tantrum. Not that I'm particularly proud of throwing great big crying fits to get my way, especially at the ripe old age of thirty-lots, but if it works and gets my dad to eat and get well, I'll do it. A lot. Loudly.

9 Comments:

  • Stay on top of your Dad's medical. Kidney cancer is not good anytime. Sutent is very promising for prolonging life. Ck with the Kidney cancer Association for more info.
    I was lucky(2003)and so was my husband(2005). Our tumors were 4cm and had not spread. We both lost one kidney but we have a matching pair! LOL It was not fun but we are leading active lives.
    We go for ck ups on a 6 mo schedule.
    Let me know if I can help you in any way.

    By Anonymous Anonymous, at 11:08 PM  

  • What she said ^^^ - as I don't have any official information, I'll leave that to the experts like your new readers. I can find anything you need online though, so if you're having trouble searching, just give me a list and I'll be happy to do it.

    What you need to do is to write down all of your questions and then make sure every one of them gets answered. If you left the doctor's office with serious questions, call them back and get some answers. Or send them a fax or an email (if they have email) with your questions and insist on answers.

    As for the insurance company - someone should get on the phone and talk to them. If they're dragging their heels, then throw a hissy fit on the phone with them. I'll bet some angry (but polite) tears would do wonders with a supervisor at his insurance company. Don't let them get away with stalling. If you feel like your dad needs something now, put your Doc Martens-clad foot down and make them give you what you want.

    Also, I'm sure there are cancer boards that can review drinks for him, so he can find one that doesn't taste like "milk of magnesia". :)

    By Anonymous Anonymous, at 6:49 AM  

  • Hey, Helly: good for you for asking questions. Pester the crap out of his docs/nurses etc because they take on so many patients they can't remember anyone from their last visit.

    I fired my family doc because I finally realized he was useless - After one visit I went to the pharmacist, we couldn't read his handwriting so we called his office and his nurse kept insisting he had prescribed me some medication that was used for bronchitis (phlegm loosener or something).

    I had sinusitis, and he had said he was prescribing me something for the headaches. She never did explain to me what a phlegm loosener would do for my headaches so I never went back.

    -Sandy

    By Anonymous Anonymous, at 9:39 AM  

  • I'm glad you were able to go - I think it's so important for more than one set of ears to be listening when a doctor talks. I'm sorry the consultation wasn't more satisfying, and my god, what a crazy office. I don't get this dependence on the insurance company before any move is made. What if you told them, I'm going to take this medicine whether they cover it or not, so I'll just write a check at the pharmacy if you'll go ahead and prescribe it. But that's never even given as an option!

    By Blogger Anonymous Me, at 11:18 PM  

  • Nancy, doctors will actually prescribe stuff if you let them know you're willing to pay cash. But, stuff like cancer drugs, no normal person can afford, so they probably don't even ask. I was curious about Sutent, so I looked it up and it's pretty much like what I expected:

    Pfizer says it expects the average price per six-week treatment cycle with Sutent to be about 4,000 usd and the yearly cost to be about 38,000 usd.

    Impossible for the average person to afford.

    By Anonymous Anonymous, at 6:12 AM  

  • Okay, I had no idea. Well, that makes sense, then. I've had a hard time getting a prescription filled for $50. Not that I want to pay $50, but if there's not a quick alternative, I can't wait two weeks for insurance company approval before I start getting better. But wow, that's expensive.

    By Blogger Anonymous Me, at 10:43 AM  

  • Thanks to all of you for your suggestions and support. Flippy, they've told him that the Sutent will run about $5,000.00 per month. However, to Nancy's point, I don't understand why they couldn't have paid cash for the first few doses so he could get started on the medication while waiting on the insurance approval. That's what I'd have liked to do, if it was me. More updates in a new post.

    Thanks again - your support means so much to me!

    By Blogger Helly, at 11:01 AM  

  • So many good comments here - I echo those and the support for you and your family! A quick tip on the Ensure vs. Boost - when I worked at the hospital - patients preferred Boost for some reason. We would blend the Boost and icecream for a thicker, more tasty milkshake.

    Lisa

    By Anonymous Anonymous, at 12:32 PM  

  • Lisa, Daddy had Boost in the hospital and outright refused to drink more or try other flavors. However, I just telephoned him (2:25PM) with your suggestion of using ice cream to cut the taste and he was actually enthusiastic. He'd just had an Ensure, pronounced it "not so bad" but was very excited by your suggestion. He was headed to the freezer to search for ice cream as we hung up. THANKS!!!

    By Blogger Helly, at 2:39 PM  

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