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The perils of Jillene — still more cliff hanging adventures.

June 12, 2010

[picapp align=”left” wrap=”true” link=”term=scary+movie&iid=178444″ src=”http://view3.picapp.com/pictures.photo/image/178444/mother-and-children/mother-and-children.jpg?size=500&imageId=178444″ width=”380″ height=”253″ /]In the last episode of our horror movie, our heroine had decided to go offย  chemo, get the lesion on her T6 spine zapped (which will end on June 21), and try to get her feet back under her from nine months of relentless chemo which, apparently, had not worked or had kept the cancer from spreading further but hadn’t killed it or had actually worked (what it did depended on the doctor our heroine was talking to at the moment). Meanwhile, in Chicago, the oncologist was searching for answers at the annual cancer doctor meeting; in Renton, the naturopath was making other suggestions; and in Seattle, the surgeon had still other ideas.

Okay, enough of the horror movie. I’ll toss out what I know, gather opinions, ask for prayer, and then Hank and I will make a choice some time early in July. As a reminder, the drugs I was on for lo these many months (since August 14, 2009) were:

  • Avastin – a “biologic” agent that inhibits a tumor’s growth by cutting off its blood supply. It has no idea how to discriminate between various small blood vessels in your body so it also inhibits the growth of small blood vessels elsewhere, including your kidneys, which can result in kidney failure, high blood pressure, and chronic nose bleeds.
  • Abraxane – a “chemo” that is derived from the European Yew tree and works like all chemos by targeting fast-growing cells, which usually include tumor cells. The problem is that it also targets other fast-growing cells resulting in hair loss, fingernail and toenail loss or damage (that one’s fun), nerve damage especially in the fingers and toes (even more fun; I couldn’t open a ziploc bag or walk without limping until last week), and red and white blood cells (resulting in anemia and susceptibility to infection). Oh yes, and fatigue. Bad fatigue.
  • Zometa – similar to the anti-osteoporosis drugs, but stronger. This one is designed to deal with hypercalcemia caused by tumors in the bone. It has few side effects, but down the road can cause fractures of the femur — actually, I should say femurs because both fracture at the same time.

So here’s the medical thinking in no particular order:

  1. The surgeon thinks I’m a good candidate for lung surgery to remove the remaining nodule in the left upper lobe of my lung. He also thinks that the shadow showing up next to the original lesion (tumor, whatever you want to call it) is probably just inflammation and said that the original lesion had shrunk from 8.8mm last time it was measured to 4mm now. So, maybe the chemo was working after all — whatever. He wants to see the brain lesions shrink before he does surgery just to make sure the cancer isn’t on the move while I’m trying to recover from a major operation. He does, however, recommend physical removal over radiation to kill the lung lesion because that will give us some tissue to send to the lab for close examination. So, surgery might happen, but likely not until early next year.
  2. The naturopath has encouraged me to start intravenous vitamin C therapy along with continuing Iscador (mistletoe injections – standard practice for breast cancer patients in Europe). The IV vitamin C would be weekly for a year and lest you all think this is way too whacky for words, it looks like my insurance will cover it. Also, I’ve had more than one person say that IV vitamin C burns upon injection. I have a portacath, so that takes care of burning. Chemo burns too, which is why they invented portacaths. I will definitely do the IV vitamin C and continue with the Iscador. These are the only two things I know for sure so far.
  3. The oncologist had the following interesting information, some of which made me a bit angry (see the last point) but I was nice to him anyway:
    a) Avastin does not prolong life at all; instead, it seems to just keep tumors to a size where they’re undetectable on a scan. So, I’m off Avastin. It’s an incredibly risky drug in many ways, like I could bleed to death if in an accident and I can’t have surgery within 6 weeks of being on the stuff. What if my appendix burst and I needed surgery right away? The only problem with going off it now is that there are studies showing it also changes the nature of slow-growing cancer and turns it in to aggressive cancer. I can’t begin to tell you how mad this makes me.
    b) The much-touted PARP inhibitors that were supposed to have such promise for triple negative cancer seem to work well, but only if you have the BRAC 1 or 2 gene mutation. I don’t have either one, so this puts me into an even less studied cancer ghetto where nary a pink-ribbon dollar will see the light of day.
    c) Zometa seems to have “some benefit” for preventing metastasis to the bone, but not as much as previously thought. Teeeee-riffic!
    d) And after I heard a, b, and c, I thought….. I was on these things for nine months for what? To run up huge bills for my insurance company? To make me “appreciate life” and learn to “live for the moment”? To ruin my health? To add more stress to my family?
  4. The oncologist also talked to other oncologists at the cancer doctor conference and went to all the relevant meetings and recommends that I try one of the following (to which I said, “I’ll think about it and let you know in early July.” I want to recover my health a bit more, finish radiation, and talk with the naturopath — did I mention that the recovery from Avastin left me with a flaming sinus infection?) Oh, and it was very very nice of my oncologist to study all of this stuff, and he said he needs until early July to really synthesize it anyway — and he doesn’t think Mr. Couch Potato Cancer is going to get off his duff between now and July.
    a) Metronomic oral Cytoxan and Xeloda. The metronomic refers to a method of giving chemo in small doses without breaks. The oncologist says that this combination is “well tolerated,” which is what he said about the last round of drugs. At this point I gave him the hairy eyeball and said, “That’s what you said last time.” It’s possible I’d still lose my hair (which makes me madder than I want to admit), feel like a very old person, get hand-foot syndrome (YUCK YUCK YUCK YUCK – the list of things I’d have to stop doing to prevent this is basically my list of things I love to do. How wickedly cruel is that?) and maybe not be able to participate in real life; however, he says he’s had patients on it for two or three years who have done very well and shown no progression of disease. I said, “Two or three years?!” Raise your hand if you’d like to be on chemotherapy for three years. This was his best option, so I said I would get on the Internet (doctors hate that) and find some people who have done this combination and get the real “experiential” scoop. To his credit he thought that was a good use of the Internet. The bonus of this one is that both drugs come in pill form which means a doctor’s visit only once a month or so to get blood drawn to see just how anemic I am.
    [picapp align=”right” wrap=”true” link=”term=bean+soup&iid=7702205″ src=”http://view4.picapp.com/pictures.photo/image/7702205/hot-potato-soup/hot-potato-soup.jpg?size=500&imageId=7702205″ width=”234″ height=”174″ /]b) Weekly intravenous gemzar and navelbine. The list of side effects of gemzar alone makes it a “heck no” for me right off the mark. Navelbine isn’t so bad, but it’s not the weekly soup special in the cafeteria by a long shot.
    c) Ixempera. This is a last-resort poison that sounds just as icky as the rest of them.

My inclination right now is to do nothing but the IV vitamin C and the Iscador and just watch the cancer for the next few months to see what it does — if anything. That could be the most stupid and deadly decision I’ll ever make in my life, and I won’t do it without much discussion with my husband and family. I also appreciate anyone who calls me on it and says “You’re being stupid.” The naturopath would be the first to say that as she’s never advised dumping chemo altogether. But I’ll meet with her on June 29 to get her opinion about the oncologist’s recommendations. Given the dismal performance of the last round of poison, and that fact that much of it has turned out to be either completely useless or extremely dangerous, I think that being skeptical about doing another round of chemo is within the realm of sanity. Meanwhile, I want to hear gut feelings, other ideas, thoughts, whatever. Prayers for wisdom are the best.

Also, bear with me if we meet socially and I avoid talking about cancer. This blog is so we can all get the latest on my health without giving cancer more time in “real life” than it deserves. I tend to dump it out all here and then I’m pretty much done talking about it and it bores the heck out of me beyond this. I have a life to live (now that I’m starting to feel human again) and cancer deserves no more than 5 minutes a day as far as I’m concerned.

And I’m very very far behind on emails. I’ll catch up eventually.

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32 Comments leave one →
  1. Babs permalink
    June 12, 2010 3:55 pm

    I’m waiting for the Musical….. *bg*

    • June 12, 2010 4:05 pm

      Yet another reason not to do the Xeloda — I’d get hand-foot syndrome and wouldn’t be able to tap dance in my own muscial. ๐Ÿ˜‰

  2. Murray permalink
    June 12, 2010 5:12 pm

    Wow! Just the scope of decisions is exhausting! Since I have no wisdom to offer, we’ll continue praying for you to have the wisdom you need. Vitamin C has to be a good thing…

    Take care of yourself and keep getting stronger!

    Maria

  3. Thomas Campbell permalink
    June 12, 2010 9:16 pm

    Praying for you all.

  4. June 13, 2010 7:04 am

    You are a brave soul indeed, doing VIT C is the right thing if those didnt work! How about making it like 2x/week at around 60 to 75gms?

    BTW, if you haven’t, pls read Hamer Medicine, if you have… have you applied this? ๐Ÿ™‚

    Good luck and more power

  5. Kerri Lunsford permalink
    June 13, 2010 7:22 am

    Dear Jill,
    Praying that God will give you wisdom, courage, and peace as you make decisions.

  6. June 13, 2010 1:09 pm

    Hi Jill ๐Ÿ™‚ When you have a chance, look up Low Dose Naltrexone (LDN). I don’t want to go into too much detail here in your comments… there is lots avail online…It is one of the cards that I have not played yet. I’m keeping it as my ace in the hole, though my alternative docs have wanted me to take it as a preventative measure… It boosts your immune system at the low dose of 4.5mg. No side effects.
    If you need a doctor to talk to about it, call Dr. Ayre at Contemporary Medicine (see the link on my blog) They are great out there.
    Keep on Kicking canSer ass my dear ๐Ÿ™‚
    xoxo
    Liz

    • June 13, 2010 2:06 pm

      Thanks, Liz! This sounds very promising. I have added that to my list of things to talk with the naturopath about. If she knows nothing I will contact Dr. Ayre. How did your IV Vitamin C therapy go?

      • June 14, 2010 12:37 pm

        Hey, this sounds good to me, too, for fibromyalgia and tons of digestion problems. Maybe we can take it together. ๐Ÿ™‚ ๐Ÿ™‚

        • June 14, 2010 12:56 pm

          IV Vitamin C can help that, but you might want to try something cheaper that doesn’t involve two two-hour infusions a week. (EEEK!) Last week I had all-over body aches from chemo withdrawal. The naturopath recommended what I call The Magic Powder, which is for fibro and CFS (D-ribose). It worked over night: http://www.bioenergy.com/store/Main.aspx?html=br

        • June 14, 2010 2:53 pm

          I mean the LDN. Sounds great!

  7. June 13, 2010 1:11 pm

    Jill… Opps! forgot to include the url for my blog..
    http://www.mehok.wordpress.com

    Cheers,
    Liz

  8. June 13, 2010 3:49 pm

    I loved the Vitamin C therapy! I also have a mediport and that really made it possible. I learned to remove the IV and flush the port at home so I could do the drips at home… too some guts, but we canSer chicks have lots of guts, don’t we? I stopped doing Vitamin C just before I moved to Ohio, and I kind of miss it. I’ve been thinking that I may want to find a way to do some more… It takes a long time to network into the knowledgeable alternative folks in a new area.
    If you don’t mind another suggestion… You might want to contact Donna Mitchell (see my blog again for the link:)) She is top flight… tell her I sent you. She has really helped me get back on my feet. You will like her.

    xoxo
    Liz

  9. Ellen permalink
    June 13, 2010 4:52 pm

    Jill, I am angry for you. 3 years of non stop chemo is a horror story.
    This also makes me mad, “…so this puts me into an even less studied cancer ghetto where nary a pink-ribbon dollar will see the light of day.”

    Prayers for wisdom.

    Ellen

  10. Marie Barth permalink
    June 13, 2010 6:54 pm

    Prayers that you and your loved ones will be at peace with whatever treatment decisions you make.

    Love and prayers,
    Marie

  11. Bemused Boomer permalink
    June 13, 2010 8:55 pm

    It sounds like you’ve got good professionals in all types of medicine on your team, and an amazing support network of other “cancer chicks.” With all that help and prayer and family support, you are bound to make the right decisions for you.

    Prayers and positive thoughts for you.

    Blessings.

  12. Sarahtee permalink
    June 14, 2010 3:45 am

    Prayers for wisdom, Jill, and for better (less poisonous) options to be made available.

  13. June 14, 2010 6:24 am

    Extricating Couch Potato to poke him with needles is probably a good plan, I know they don’t like that much, make it easier to find his friends. Plus, hand-foot syndrome reads exactly like a man’s disease, no gloves for cleaning, no running, no bathing… I think we may be onto something here.

    The vitamin C treatment doesn’t look like a bad idea at all, just have to watch your vitals carefully which you do anyway to make sure there are no other issues. I suppose you could just squeeze some oranges into that portacath each morning with your eggs and bacon, well, maybe not the bacon hard to get down the funnel.

    Of course I suggest trying a gluten free diet too, no more acid reflux for me!

    With all of this, and the doctors, you do have to decide what is best for you, the constant sick you feel needs to be offset with good days too, just way the considerations and I think with the progression this has, you should have plenty of time to come up with a good decision, and lots of gamma radiation so you can be a bit like the She-Hulk.

    -Scott

  14. June 14, 2010 8:10 am

    If it helps you through the perils, you can borrow my middle name… ๐Ÿ™‚

  15. E Lis permalink
    June 14, 2010 8:31 am

    I am angry with you. I sometimes wonder do all the doctors know what they are doing…

    Prayers, good thoughts and white light.

  16. Lisa Welch permalink
    June 14, 2010 8:22 pm

    No great wisdom to share here. This is a profoundly personal decision for you. I’ll keep hoping you feel like you’re working with the best educated, most informed people and getting as much information as you can to feel at peace with whatever decision you make.

  17. Gina Agne permalink
    June 15, 2010 6:16 am

    Thinking of you. This quote by Ralph Waldo Emerson makes me think of your strength, โ€œTo laugh often and much; to win the respect of intelligent people and the affection of children…to leave the world a better place…to know even one life has breathed easier because you have lived. This is to have succeeded.โ€

    • Ellen permalink
      June 15, 2010 12:56 pm

      Gina, yes, that’s our Jill to a T. Afterall, she got OUR respect! ๐Ÿ™‚ And she makes us laugh at the best of times and worse of times.

      Ellen

  18. Resa permalink
    June 15, 2010 10:33 am

    The number three point in this post would make me furious. What the hell? Are you supposed to be the experiment in the cancer getto because there are no pink ribbion dollars? Sheesh! The oncologist not telling you this from the beginning is inexcusable in my book.

    Lots of things to consider. Personally, I don’t know how you have had the stamina to keep it up. I’d have said, “f*ck it” oh, probably about Christmas time. I probably would have replaced the lighted Santa on my front lawn with a big ol’ middle finger.

    No advice from here that is actually helpful, though. Wish I had something to offer other than the mental image of a big lit up middle finger.

    • June 15, 2010 11:15 am

      Aw, c’mon Resa. Tell us what you really think. ๐Ÿ˜‰

    • Ellen permalink
      June 15, 2010 12:53 pm

      LOL! I knew it was you Resa before I even got to your name! If I may add to that mental image, which I’m going to do anyway ๐Ÿ™‚ I say tie a great big pink ribbon around that big lit up finger!

      I feel a song coming on …Tie a pink ribbon ’round the big middle finger … Someone get ahold of Tony Orlando and Dawn for a updated rap rendition! lol

      • E Lis permalink
        June 17, 2010 9:12 am

        Yes, I also knew that was definitely Resa ๐Ÿ™‚

        I like the visual image. Wonder what would happen if folks showed up for chemo and radiation appointments with shirts that express their true feelings?!

  19. JakKim permalink
    June 16, 2010 11:59 pm

    Geez, I have notaclue what to say and nary any advice to give. But, I didn’t want that to stop me from saying “hey”. So “hey”! Been thinking about you. And (((Jill))).

    xoxo Kim.

  20. E Lis permalink
    June 17, 2010 2:14 pm

    If you need a laugh, I don’t think Jill I ever shared with you what I almost put on my voicemail when my Dad was diagnosed.

    I really, really wanted too, but did not want to get committed and carted away to say on my voicemail:

    “Sorry we are all busy with Cancer right now. If it is important, please mail it and I will open it when I am in the mood. If it is not important, than please call back some other year.”

    Everyone kept wanting to know where I “was”? So did I. And it was not even my own body going through it. I am close with Dad though, but still, definitely not the same. I can only imagine. I do not know.

    (((HUGS)))

  21. mom permalink
    June 17, 2010 8:40 pm

    Jill= wisdom= Dad = God’s influence, My dear, Keep up the touching of God though Dad and as Dad did it in his lifetime. Love from Mom

Trackbacks

  1. Cancer center will fill void in south SJ – Stockton Record | Cancer Hospital Blog
  2. Here’s the plan – at least for the next couple of months. « Jill's Blah Blah Blog

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