Posts Tagged ‘cancer treatment’

Just one more setback

Posted: October 30, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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Last week, we took a little jaunt to Breckenridge. It is a lovely little ski town but our resort was at 10600′ elevation. I live at 8500 so I wasn’t overly concerned. But 5 days in, I was sitting, putting on my makeup, and suddenly could not catch my breath … and I honestly thought I was going to lose consciousness. The very next day, we left thinking that getting off that mountain would make it all better. It did make it better, but not by much. Since it took 5 days to start in on me, I thought nothing of this. But after being home for 4 days, without much improvement, I called my onc’s nurse and she said I needed to go to the ER, so I did. But I specifically asked her if the Megace could’ve caused this trouble and she said she has never seen anyone have a problem with this drug. Needless to say, it is those absolutes … never and always … that always get me. She said she has never seen it happen … well, that sealed the deal. It did happen. Now if I could just get them to tell me there is absolutely no way I could possibly live to be an old woman. That would bring my healing forth in a NY minute!

A mere 6 hours later, after chest xray, blood tests,cultures, urine samples, flu tests, and a chest CT, they finally had a diagnosis. Sure enough, I have two lungs with multiple clots and dead tissue as well from the damage they caused. So they admitted me to start me on Lovenox injections twice a day until my blood thins enough to do the Coumadin, which may be for the rest of my days.

And needless to say, the Megace is now discontinued, so I have no idea what will happen to my fledgling appetite without it. So now I am backed into a serious corner … oxygen or nutrition? Can’t exactly live without either one. So even though the cancer is backing down, now I have this bloody mess going on. God help me, I just feel like I can’t take one more thing. Feeling just a smidge devastated by all this! Sorry for the downer, but hey what can I say? I’m pretty damned tired of it all, myself!

Too cold to play outside

Posted: October 6, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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Today the highs did not get out of the 30s in the mountain town where we live. Wood stove cranked up downstairs and I’m all bundled up trying to stay cozy. I just had to break down and buy a couple of size 4 pairs of jeans, which believe it or not, really hurt. Most women would be ecstatic but if I had worked for it, that would be one thing. Anorexia is totally another thing.

So I saw my oncologist last week and boy was he pleased! My circulating tumor cells test was 360 a mere 5 months ago. Now it is down to 7. Now granted, anything over 3 is kind of a bad situation, but still … That is so much less cancer floating around in my bloodstream than there was not so very long ago. Obviously we have the cancer on the run, but how can I survive if I find food repulsive? No amount of MMJ would change this, and hasn’t, for almost 4 years now. I had experienced some improvements … Probably doubling what I was eating … Through hypnotherapy, which has been a very healing and interesting process. But it still wasn’t enough to stop my TPN nutrition at night.

So when I saw my onc last week, he finally sat down, crossed his legs, and started discussing a drug called Megace (megestrol acetate). It is not a drug I would just take willy nilly as i do not believe in synthetics when natural is … well … natural. and especially hormones. And this is synthetic progesterone. I swear, I have steered so many people away from synthetic hormones. This cancer this continues to be an exercise in humility. Sometimes ya just gotta do what you gotta do. Anyway, this drug used to be used to treat cancer back in the day after regular hormonal therapy failed. But gals wouldn’t stay on it because it made them gain weight. So now that is how it is used … in lower doses for appetite when there is none.

I have known about this drug for years, but with my cancer raging out of control, the risk of thrombosis from it was just not worth the risk for any dr I have had in the past several years. But now … Now we can talk. He and I are both convinced that the fluid that is again accumulating in my belly is solely from the TPN and not from a cancer process. So he handed me a prescription, told me to fill it, and get off that TPN. So I filled it the next day and started using it. Omg … Aaaaaaaaaaaaacccckkkkkkkkkkkkkkk!!! No one told me it was liquid! I mean, who makes liquid meds for adult folks who can swallow pills? Jeez! And it is the most bitter, chemical tasting mess I have had the displeasure of ingesting. I honestly wasn’t sure if I would handle a teaspoon of that mess once a day. I know … Big baby, huh? But remember, almost everything I put in my mouth lately made me gag and puke even if it didn’t taste bad. So I waited what I thought would be a couple of weeks for it to take effect … If it did anything at all.

Holy crap what a difference!!!!! After three or four days on it, I started eating regular-sized meals and I can’t even describe the joy it brings me to be able to put a bite of organic sweet corn in my mouth and enjoy the flavor of the ghee blended with the sweet crisp of the corn. It has been such a long time! So I am pretty much eating 3 meals a day now and working on backing down this TPN. Would rather see a little size come on me first, but I am getting fluid again and really wanna be done with that. So if the TPN truly is the culprit, I need to be able to get completely off it before I drain again. Currently, it is an experiment. We have backed me down to every other night to see what happens. But we are going to Breckenridge in a couple of weeks and I want to be fluid-free for that trip for two reasons … Amazing restaurants there and so my torso won’t look all sausagey, which is a look I have come to despise on me.

So over the next week or so, I promise to try to make the time to update you all, in case you’re curious, about the hypnotherapy thing … It is much different than what I expected … And about an amazing session I had with one of my energy healers, Penny Guinther, and introduce you to her. Se is just as amazing as both Kurt Peterson and Kris Kraft, in my opinion.

All I can say I I have no idea why I am still here, or what God has in store for me moving forward, but whatever He is up to, it sure ain’t boring. From my perspective at this moment, it is very exciting. And it feels hopeful for the first time in a year or more. More to come …

Update

Posted: June 22, 2012 in Breast Cancer
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So I went to see my oncologist yesterday. I am still too down to treat with chemo. My platelets and WBCs were tanked again. So I get two weeks with no cytotoxic mess. I am holding hope that this Tamoxifen I have been taking for the past 5 weeks, will kick in in the next few and kick some major cancer ass! Honestly, it “should” work even better than chemo drugs for my kind of cancer, lobular carcinoma. The only problem is hormonal therapies take a minute to work … meaning like 3 months. That is why we tried the Taxotere again … it worked so well for me last year. And it may be working now … but it tears me up too much. It appears that while the spirit is willing, the flesh is so weak.

Meanwhile, this huge ascites is driving me crazy! It is the biggest it has been, but my albumin is 2.2 right now and that is soooo low! If I had any more drained, my albumin would drop even lower and, since the cancer is still not under control, it would come right back in.

As usual, my test results were a mixed bag … two weeks ago, I had a circulating tumor cells (CTC) test done and it came back at 350-something. I rarely pay attention to this number because if it is over 5, you are pretty much dead woman walking anyway. Well, yesterday it had dropped to 30!!! That is the lowest it has ever been. But I am chock full of fluid and pukey at night, so what the heck? My onc thinks it is just a discrepancy between labs, but 320 points is a bit much for a lab difference!!! Thirty points, maybe.

So anyway, I will be seeing Kris Kraft on Tuesday. Then my onc again on Friday and we will reassess and either consider Halaven or Affinitor as my next step.

Calories still onboard but things aren’t good

Posted: June 3, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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They have moved my TPN bags up to 1800 calories now, and not a moment too soon. I knew I was getting fluid back when I started the TPN but damn … my insides hurt so badly after the drain … and now it is even bigger than before. More bad things are happening too, like nothing is passing. I was afraid I had an obstruction like last year, so I went to see my onc on Friday. There were no bowel sounds and that wasn’t good. He rushed me over for an xray to see if I had either obstructed or had a condition called ilius where the peristaltic action stops working, so nothing moves through.

It was not an obstruction this time …. just nothing is moving at all. So the only solution is to treat the cancer and hope it backs off like it did last year. So we started weekly Taxotere Friday, right then and there. But I have been vomiting every evening for four nights now because nothing will pass, so it has to come back up. So I can honestly say I could not survive right now without this TPN; I am so thankful to have it. Tomorrow we have to make the trek to the Denver VA Hospital to meet with several practitioners and dietitians there in hopes of making the switch from my paying for it to the VA paying for it. And honestly, with the pain and vomiting I have been having, I dread it so bad. The only upside is that it is first thing in the morning, so my bad times typically come a bit later in the day. Let’s hope there is no deviation to that pattern tomorrow.

My biggest fear is that, having been exposed to eight different chemo drugs in three months, nothing is going to work. But I have to try, right? I just don’t know how many more rabbits I can pull out of my hat, though. And I know this blog is turning into quite the depressing read and I just don’t know what to say about that. It is what is it and if it gets too painful for you to follow, I understand. It’s getting a bit hard to stay snarky and upbeat these days. But hey, if I can get this cancer to respond to some treatment, that will all change in an instant!

So anyway, that’s where we are. Something we did today was to buy his and hers cremation packages from The Neptune Society I know it might sound macabre, but I don’t want to leave this for John and Erika when I leave. It was very reasonable … less than $3k … and no matter where I am in the world, they will pick up my body, cremate it, and return the ashes to my family. There is a lovely cherry wood box that the urn goes in. You can choose to return remains to family or have them scattered at sea. So not exactly a cheery shopping experience, but it was something that, though distasteful, was very necessary.

I have my next chemo treatment on Thursday. God please let things be opening up by then. I am just not ready to leave my loved ones yet! Sorry the news still ain’t so hot, but at least I do have nutrition (especially since I can’t eat at all) and a plan of attack!

All home and settled in!

Posted: May 19, 2012 in Breast Cancer
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So we finally made it home Wednesday evening. Thursday was pretty much lay around and try my best to catch up on rest from that three-day trip. And yesterday, we drove down the mountain to see my oncologist, Dr Headley. We were hoping all the biopsy results had come in, but they had not yet. However, we did get a partial report. The tumor on my liver is strongly estrogen-receptor/progesterone-receptor positive so that means hormonal treatment options should work even better than chemo for me. The only downsides to that are the Faslodex injections I was getting weren’t working for me, which is why I stopped them in January. And it takes about three months for a hormonal therapy to really kick in, so what to do in the meantime? The other unfortunate news is that this cancer is still Her2neu negative. Her2neu is an oncogene that more aggressive cancers carry that can be targeted with treatment, making it very effective and not very toxic. Metastatic cancers can switch from being Her2neu positive to negative, and back again. So I was kind of hoping mine had done that so I could have Herceptin and, this summer, Pertuzumab, as options. Not this time around. It’s funny really. Only in advanced cancers would one wish for a more aggressive form of cancer so one could have more treatment options available.

Anyway, he ordered a full load of labs drawn so we can see exactly where I am right now, since stopping treatment at Progressive. He prescribed Tamoxifen for me to take … which I have mixed feelings about because it is carcinogenic itself, but I am not in a position, with such diffuse and advanced disease, to split hairs. If this cancer was an earlier stage, rather than the stage that will kill me, I wouldn’t be so quick to buy off on that. Ever since 1999, when I was first dx, I have avoided Tamoxifen. I did take it for about six months until I started spotting, then they took me off it. It can cause endometrial cancer and, since I had dodged the bullet that time, they didn’t want to take further chances. So I really never gave Tamoxifen a good run. I will be doing that starting today. But in the meantime? That is where the remainder of those biopsy results will come in handy. It looks at genetics and statistical probabilities to determine which chemo drugs will, and won’t work, for your cancer. When that comes in, we can then determine if we bring in a little chemo to keep things in check until the Tamoxifen kicks in. I will be seeing Dr Headley again next Friday, so we hope to have a full game plan then.

I will be getting my fluid drained next week. It will be scheduled for the first part of the week so at least that discomfort will be gone. I am still taking the DCA for this cancer so hopefully that will start doing me some good as well. And I saw my VA dr as well, so we can get me on Total Parenteral Nutrition (TPN) again to start putting back on some of the weight I lost while in Georgia. I have to see their nutritionist next week, hopefully the first part of the week as well, so we can get that TPN on board. But it was not all medical downer stuff yesterday. I also met my BFF downtown and we went wig shopping. I realized that I probably will never have my own hair again. It takes a good couple of years to grow hair back and for it to resume its normal texture. Do I have that much time? Especially without any chemo drugs to make it fall out? So I figured I would need to invest in a really good wig. There is a place nearby that does custom wigs to match the hair you had before you lost it. I called them but I have already lost my hair and now that I am not limited by my real hair’s texture, etc., I could have whatever I wanted. They needed to know what I wanted. So we proceeded to a local wig shop to try a bunch of stuff on. I asked for her high-end wigs so that I could feel the difference between the less-expensive ones I currently have, that drive me bonkers, and the hand-tied, lace-front ones. I have this really small head … I have always had one helluva time finding even a baseball hat to fit me and not come down over my ears. From my crown to the top of my ears, I am much shorter than most, so most wigs come down behind my ears too low. She found the one with the smallest cap and it fit like a dream!!! I liked it so much, I just went ahead and got it. It was probably 1/3 of the price and since I don’t have to style it myself, I can now have long hair again.

Center for Study of Natural Oncology

Posted: January 31, 2012 in Breast Cancer
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By this time, I had discovered an online community called CancerCured.  On this site, there are cancer patients, naturopaths, MDs from all over the world.  They discuss all sorts of alternative treatments.  This community is an invaluable resource and is listed in the blog Resources list.  On this forum, I met a man named Dr. Vincent Gammill, a biochemist, who runs the Center for the Study of Natural Oncology in Del Mar, CA.  He has been working with advanced cancer patients there for 20+ years and, in the past couple of years has actually become an advanced cancer patient who has kept himself up and running quite well.  There he has a retreat where you go for a week and learn about all sorts of treatment modalities, both prominent and obscure, as well as their mechanisms of action, and he helps you decide what is the best path for you.  Dr Gammill will not tell you what you should and shouldn’t do.  He exposes you to what is available, has you do homework to read up on those options, and come to your own conclusions.  Then he will put you on your path and help you tweak it as you go.  This man knows about things most of us have never even heard of.

So, in October 2008 we headed down to Del Mar for a week.  The retreat house was in a beautiful location and we got the master suite which was incredible.  That particular week, we were the only ones in residence, so we had the place to ourselves. There was a wonderful hot tub and far infrared sauna (wish I’d known a little bit more about that then).  There was a shopping center right across the street, with a grocery store and several restaurants, so a car really wasn’t necessary.   There were computers and books so we could research the things he was discussing with us.  The only drawback was every other word I had to stop him and ask him to spell something for me.  I mean the man is a scientist and speaks like one.  To this day I keep telling Vincent he needs to dumb things down for me … and the rest of the world!

The first day of the retreat he takes us down to Tijuana to the San Diego Clinic there for some testing, which is included in the price of the retreat.  Dr Gammill is really well-versed in the Mexican clinics and their modalities … which are successful and which are not.  He was once medical director at one of them.

Anyway, we examined all sorts of things and how they worked together and, by the end of the week, we had something with which I felt comfortable that I could do on my own.  It was complicated enough that I had to keep a spreadsheet in the medicine cabinet and try to remember what to take and when!  Once you get a load of that spreadsheet, you can easily see why the majority of people opt for chemo and such.  That requires no lifestyle changes.  And insurance covers most of it.  Just go get your infusion once every three weeks (in most protocols) and take whatever pills you need to take to manage your side effects.  That being said, those side effects can be quite nasty, so that’s no small feat.  This was easy for me, by this point, after the lifestyle I was living with Budwig!  I mean, pills are easily transportable and water is readily available.  Much easier than being chained to a kitchen, stick mixer, and juicer every day or pack for a major outing just to run errands.  So this is where we started and we monitored my progress monthly through blood tests.

Dr Gammill is a very patient man and he wasn’t the one whose life was in jeopardy here, so he spent a lot of his time trying to grab my ankle when I would be flying around the room in a tizzy.  One of his favorite mantras is, “Things are rarely as bad as they seem and rarely as good as they seem.”  When you have cancer, it’s really hard not to take bad news as a death sentence or good news as a manic high.  So he’s really good at keeping your brain engaged and your panic down.  It’s hard to defeat any enemy when you are not in strategic mode and you’re just in reaction mode.  We worked together for almost a year but things kept progressing.  My tumor markers (the blood markers they monitor for different cancers) continued slowly, but steadily, upward.  Dr Gammill wasn’t concerned because he realized that my condition could’ve/should’ve jumped up and grabbed me years prior, so in his eyes, I was in really good shape and had plenty of wiggle room.  My markers weren’t as high as many people I knew whose were in the thousands.  Mine were only in the hundreds.  But I was getting physically sicker and sicker.

By this time, I was beginning to show signs of small intestinal partial blockage.  I would get intestinal spasms that I can only compare to labor pains.  I couldn’t eat.  My belly was expanding like a pregnant woman’s.  I felt horrible.  Vincent was hearing me complain of these things, but he wasn’t there to see it, so he really had no idea how unbearable it had gotten for me.  I felt I had reached critical mass and needed to move and fast.  It was at this point that my next step was lighting up on the path ahead.