No more slacking!

Posted: November 17, 2012 in Breast Cancer, Spiritual/Emotional/Energetic

Well, I have been putting off this particular update as it is more of a mixed bag than anything else.  And I’m getting just as tired about writing about feeling so great, then getting hit with the whammy, then feeling great, then whammo again, as you guys are getting tired of reading about this roller coaster journey I have been on for the past five years.  Here I have been doing so very well for the past six months, and now I have to post bad freakin’ news again.  AGAIN!  So if any of you just are getting to where you can’t read this any more, I totally understand.  I am pretty damned tired of it myself.

Before I get into the gory details, I will tell you about my wonderful hubby!  I currently have an iMac desktop, an iPad2 and an iPhone.  But these days, I just don’t spend time at my desk in the office, so have really been jonesing for something more portable but more powerful than the iPad2.  Last week, my husband waltzes into the bedroom with a brand new MacBook Air 13″ for me!  This puppy weighs in at a mere two pounds … even my little weakened self can handle it with ease.  So now I have no excuses for not blogging.  I have a real, live computer for it, now, without sitting at that desk.  I love, love, love my new machine.  And I love, love, love my husband for spoiling me so rotten!

OK now on to the less-than-stellar stuff.  As you already know, a couple of weeks back, I started having pulmonary emboli in both lungs.  Luckily, I was alright and am maintaining by using oxygen at home and taking twice daily injections to keep more clots from forming.  And I lost my port to another systemic infection, which I am treating right now with antibiotics, hoping to drop this low-grade fever … but any number of the drugs I am on could cause that fever, so good thing for cultures to tell the tale definitively.

I started getting some fluid back in, which is never a good sign, especially now that I am not on the TPN any more.  Usually indicates disease progression.  So we drew tumor markers.  Yup.  My CEA had been at 7;  the high end of normal is 4.5.  That is how damn close I was to remission … and now it is up to 23 in the past month.  Disease has outsmarted Tamoxifen and it is now time for a treatment change/discussion.  Unfortunately, the drug my oncologist would recommend sounds like a personal train wreck waiting to happen for me.  It is called Afinitor and, while it has been used in renal cell carcinoma for some time, it is brand new for breast cancer.  But it carries pneumonia/lung issues (which I already have), it is a immunosuppressant and I already have an systemic infection … and not ready for my mouth to blow up with sores.  Don’t feel any peace with that drug at all.

The way I see it, I have five options available to me.  I could do nothing; I could add Afinitor; I could use a chemo drug instead; I could switch to an aromatase inhibitor that I haven’t yet used (Arimidex); or I can go with Vincent Gammill from the Center for the Study of Natural Oncology.  He is a biochemist who has been medical director to some of the Mexican clinics and has been working with advanced cancer patients for the past 20+ years.  I worked with him in the past and, though we weren’t able to turn my disease around at that time, he has some other tricks up his sleeve that I have not tried.  They are a little more toxic than what I tried of his in the past, but heavier firepower always comes with a price.

So it is back to the treatment drawing board for me.  I have just gotten my hair back, so don’t relish the thought of losing it again (though I do have an awesome custom wig being made right now).  We are getting to the point where the options are getting more toxic and the big question here is, will it give me any time and, if so, how much?  I know women who have gotten upwards of three years out of a single chemo agent.  Damn, I would love to find a drug that would do that for me!  If I do nothing at all, I feel pretty darn good right now.  But in the next few months, that will change.  That’s how it goes for me.  Numbers start up a few months prior to my physical symptoms telling me there’s trouble.  So I have had two sets of labs, 2 weeks apart, that both showed progression, so the Tamoxifen is no longer working.

My journey is so odd … it is like the Boy Who Cried Wolf.  People who know me now are like, “Oh, you’ll pull through … you always do.”  But each time I do, I never come back quite as strong as I was the last time, so my overall trend is downward on the whole.  And it is like this with all us metastatic folks … we have downward spirals until a treatment comes along that works really well.  And up we come.  But none of us know when the spiral will be the last spiral and then we’re just gone.  Has happened to more friends than I can even count any more.  Only have a couple still left standing.  One guy I met in Georgia had traveled to a different clinic in Florida for treatment.  He left there, heading home.  Got as far as Nashville and didn’t think he could make it any farther.  He went to the hospital and died a few days later.  Just like that.  Holding his own; sick with many different processes like all of us metastatic folks have, but holding his own.  Just points out that we never really know what is going on beneath the surface of our skin.  I could have a tumor eroding through the wall of my small intestine as I type, and could bleed out this very night.  God knows my drugs didn’t play nicely in the sandbox together last night and I vomited up all my dinner … cost me half a pound that I can ill afford right now.  But hopefully that won’t happen again any time soon.

So just another “oh crap” update from me … I can’t begin to tell you how badly I wish I could’ve reported my numbers were now normal and my winter was looking really good.  Now I don’t know where I’m going, or how this one will turn out this time … but I have no more excuse not to keep you posted now that I have my little Air and can blog all I want!

Since it is a lovely day out, and I feel fairly decent, I am gonna put my O2 backpack on and go hang out with my horse for a bit.  Won’t be riding or doing much else but hanging with him, but I am on a woo-the-horse mission right now because he is just not convinced that I am a good deal yet.  So all we will do today is spend pleasure time … full of scratches and grain … the way to a horse’s heart is truly through his stomach!  🙂

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Comments
  1. Tina Nance says:

    First let me say….Yay John!!!
    I love reading your blogs. Your analogy is perfect; you ARE riding a roller coaster. As a friend/reader I know this, and willing ride along – through good and bad news. I think it stinks the Tamoxifen stopped working. I will be praying that you are able to find the right treatment, the one that will give you years of healthy living. Good Lord woman, you are smarter than most oncologists! 🙂 so I have the utmost confidence that you will find it.
    Enjoy your wonderful horse today!
    Hugs

  2. Tracy says:

    I read this and my heart goes out to you. I know how hard it is. I rode the mets rollercoaster with my Mum and my Aunt, I always hoped for more highs than lows. I’m fighting BC now, hoping to cast off the family curse for good. All the options are tough options but I send you strength to endure whatever it takes to get back up on that high point again.

  3. I’m always glad to see an update from you. I hope what ever course of treatment you end up going with gives you the best possible outcome.

  4. jrdegnan@juno.com says:

    Hi Melissa, Good to hear from you, but not good that the numbers are up again. This cancer thing is really the pits! Today I am missing my hubby so much! Just a trip to the grocery store almost put me over the edge. I kept seeing things that John would have liked and that I didn’t give him because of the cancer. Sometimes now I wish I would have just given him everything he liked. He was never fussy and never complained about his food. He thanked me for every meal since we were married 41 years ago. I’m actually anxious for heaven some days. How great that your hubby bought you a fancy device. I got John a kindle so he could read but near the end he couldn’t see well enough. He did read with it for awhile. and it helped pass the time.Let me know how you make out with Vincent. I contacted him about John but I don’t think he could do much. Brain tumors are a whole different story. I’m not on the cancer sites anymore. My daughter deleted them because she thought it would make me more sad. So I’m just trying to keep up with the people I’ve already met. I will pray that whatever you try next will be the magic bullet to put you in remission for a long time!!! If you would need any suppliments or medical stuff, please let me know. Most of the stuff I have is from Standard Process, and Biotics. I have boxes of things that our nutritionist recommended over the last 3+years. I’d be happy to send you anything I have Well I better go. I have friends coming from out of town tonight.Keep looking up! Love, Dianne

  5. Meg Patterson says:

    Fabulous news about your new computer! Yay husband! And bummer about the markers and other stuff rearing their ugly heads again. Don’t they know you are DONE with cancer?

    Once again, I would say follow your gut with the treatment choices – even thought that’s hard to figure out sometimes. I’ve heard really good things about Vincent Gammill and I think anything is better than chemo again really. Have you ever tried Poly-MVA? It’s a very expensive liquid supplement, but you could try it at home without having to go anywhere. I think it turned my skin mets around a few years ago… That was at Dr. Forsythe’s clinic in Reno.

    Never stop posting, my dear. People always want to know how you are and want to help.

    And I’m so glad you get to hang out with your horse! What a blessing.

    • No Meg, haven’t tried Poly-MVA. I honestly haven’t found any product like that that Vincent thinks is worthwhile. But that’s one of the things we are going to discuss tomorrow. 🙂

      • Meg says:

        Several people said good things about it at the Annie Appleseed conference in Sept in SF. Also, I am on an Aromatase inhibitor which seems to be be working (ER+, are you?). The side effects don’t seem to be any worse than what you are experiencing (no libido, joint pain). My markers have kept in the normal range for the last 2 years on those.

        Stay strong! Or scream and cry when you need to…

      • I will ask V about it again tomorrow. I was on Femara for 6 years. A year or two after I stopped it, mets were dx. The million-dollar question is did it fail me and the mets started cooking before I stopped the drug, or did it keep me disease-free and when I stopped it, mets occurred? So I have not used Arimidex … and it has been probably 6-7 years since I was on Femara. Which one are you taking?

      • Meg says:

        Exemestane (generic for Aromasin). Yeah, I hate those million-dollar questions… who knows? Glad you are seeing V tomorrow. There’s nothing better than a positive upbeat person with a lot of tools and new ideas 🙂

  6. Bigitte the Swiss Miss says:

    Melissa My dear friend, thats not the news I want to hear from you…. You deserve only good News…

    But as your friend I am here to Hold your hand when the ride gets to fast. And never mind I am always here to Hold you!

  7. Kim Barber says:

    You summed up this ride perfectly! For me, it gets harder and harder to keep finding the strength to battle this – you and I have been doing this for years! Feels like combat to me – I’d rather be well:-)

    Hugs,

    Kim

    • Kim, I think this is how we die of cancer. We get so worn out from the battle that we just can’t fight any more … that or the SEs are so bad there is no tx your body can tolerate any more. 😦 I just had a lesson with my horse and I swear, I just feel weaker. I know I am battling PEs as well as a staph infection, but I just don’t have the juice I had a mere month ago. I feel like my trend is downward. Each time I progress, it gets harder to come back from it. I’ve gotta say that there is a woman at my stables who was originally dx in the 80s. Then she got lung mets in 95 … then she stopped all tx because the hormonals were too hard on her. She has done nothing since and is still here. Who knows where all it is cuz she is no longer monitoring. She has just decided she is staying until she’s ready and that is just that. Maybe I need to adopt the same attitude and perhaps that day is coming for me in the near future.

  8. marilyn says:

    someone on our list got into serious trouble with affinitor. Any drug that can cause pleural effusions and pericarditis in a disease that can cause pleural effusions seems self defeating. where are the studies for the efficacy? I do not know a lot about drugs, but I do know that unless a drug company releases all studies on something new good or bad they could be causing great harm. Has this drug helped anyone? How Long? So many questions for a drug with practically a built in black box warning.

  9. Janice says:

    Melissa, that is fascinating about the woman with untreated bc mets since 1995 (did I understand correctly that she stopped tx when dx with mets in 1995?). So, 17 years with mets, and no tx!? Does she feel well? Someone ought to study her! Is she doing anything, like a special diet? That is soo inspirational, I would love to know more about her!

    I got my PEs 3 weeks after starting Tamoxifen, and my onc said that 1% of women on Tamoxifen get them.. .it is a known side effect. Also said that blood clots can be caused by EITHER the cancer or the Tamoxifen, no way to know which it was. Therefore, since it might be the Tamoxifen, i am not to take it ever again. And since it might be the cancer, I’m taking Lovenox shots indefinitely.

    -Janice

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