Archive for the Non-Invasive Diagnosis Category

Cycle 8, Day 1

Posted in Evidence-Based Medicine, Non-Invasive Diagnosis, Sustainable Energy, Sustainable Health, Uncategorized with tags , , , , , on January 28, 2011 by Leane Roffey Line

Some very good news. Marker Numbers for CA 15.3 have dropped to 367.8 from 568!!!! And, arecontinuing to go down. Also he did another test, a called a CEA on internal organs, like pancreas, lung, liver, and its normal! CA27-29 not back yet but it measures the same thing as CA 15-3, so I’m not worried.  I had Taxol and Avastin today, and though tired, I’m jazzed. Just proceeding as planned. Meeting with the onc short and to the point.

Blood panel and metabolic panel is holding steady. Overall fatigue is better, but the aches and pains everywhere from winter cold and humidity (both lack of and excessive days) have everyone aching.  I am still working on the chemo induced anemia, it’s getting better.

I’m on some new projects, like learning Esperanto just for kicks as part of my Steampunk exercises.

I’ll try to fill this post in a bit as the week goes on, just wanted everyone to know the whopping good news about the CA15-3. This puts the value right back where it was this time last year in January, believe it or not, so it’s wandered up and then down, then up, then down. All the details are in these posts, I’m really glad I chose to blog this story because I don’t think anyone could believe it otherwise. No one could say this cancer is curable, but they can say it’s controllable with today’s modern medicines. Not in all cases, perhaps, but new things are coming out every day. Hope is a wonderful thing.

LRL aka Joule Watt.

Chemo Cycle 7 Day 15 — Short and Sweet

Posted in Evidence-Based Medicine, Non-Invasive Diagnosis, Wearable Devices with tags , , on January 14, 2011 by Leane Roffey Line

Good session today, front to back. I have next week off, then we will run tumor marker numbers. For today however, Hematology held just about where it was last week, and general chemistry was good. Glucose was a bit high for me, but with all the Christmas goodies I’ve been eating I expected it. Weight was 127, down a tick. Great improvement in the back pain (both the onc and I are wondering if its a bit of arthritis as well as things the back xray shows from last week). This weeks urine test was down to +1 so I opted to get the Avastin when given the choice by doc. No telling how long Medicare will allow me to receive it.

Its really cold here today. Near zero when we woke up. My husband had me in four layers of clothes, hat, scarf & wig of course (toasty warm), thick cordoroy pants and thick socks. Everything zipped down in the front so the nurses had easy access to my Power Port, which behaved wonderfully today.  Plus I wore my new back belt under some of the clothes to protect my midsection — all I need is a draft on those compromised muscles and I’d be in bed. Here is an amazing thing about cancer which Nurse Deb once told us — Just because you now have cancer doesn’t mean that you somehow got rid of other problems you had, like arthritis, degenerative disc disease, heart problems, etc. etc. So you have to be vigilant with yourself.

I was home by 2 pm, ate some chicken and rice, which was yummy, and took a well-deserved nap.

As I think of other things, I’ll update this post over the next two weeks, next appt. on 1/27, with blood draw on 1/26.

Onc likes scans every three months, so its looking to February for more scans of some sort. I truly like this guy’s thoroughness.

Everyone have a safe winter.

Chemo 18, December 30th, 2010

Posted in Evidence-Based Medicine, Non-Invasive Diagnosis, Sustainable Health with tags , , , on December 31, 2010 by Leane Roffey Line

Had a good meeting with the onc — he’s comfortable with me remaining on the Avastin, says from what he read the payment decisions are still on the table for those currently on the Avastin/Taxol protocol so we went ahead and did the Avastin yesterday. Pretty good treatment with the Taxol. I feel pretty good today, actually (it’s early on the 31st),  much more mentally sharp too. I’m back to being able to play my online games and do a bit of reading so I’m getting good R and R at the moment.

Bloodwork looked as good as its ever been. RBC was 4.17 and Hemoglobin 11.7. WBC holding at 3.7, a bit low but okay.

Platlets a bit low but pulling up.

Chemistry all within range.

Because of the traveling pain in my back, we had xrays done yesterday to rule out any compression fractures. I’ll find out from the doc if there is a problem, meanwhile he renewed my Percoset for days when I have a flare up. The weather, I notice, has a lot to do with the pain. When its cold, it gets ridiculous.

I really like this new oncologist. I liked the old one also, but this new guy is really thorough, he even did a mini-check on my reflexes, hands and feet, and I’m pleased to say they checked out well, even strength! He also gave my lungs a thorough listen and can hear air moving everywhere, which to me means they too are improving.

We do a urine sample on days when I take Avastin. Yesterday’s sample was up a tad, and I admit I had a few cookies with coffee before coming to the clinic, so we’re doing a 24 Urine Specimen collection here at home (started this am at 4:14). The hospital lab will be open tomorrow (New Years Day) so we’ll be able to get another blood work sample done and drop the urine sample off. Am hoping this will not turn up any latent kidney or bladder problems, but if I have some kind of infection, this will find it and we can treat it.

The only side effect I’ve had from the Avastin, btw, is a common one per the doc, and that’s baby nosebleeds — they clear up quickly, and I’ve found that keeping the mucosa happy with some gentle saline nasal spray and treating it like a baby when it bleeds has been good for my nose. Some women report a bit heavier conditions with the bleeding, but I don’t know what they are doing to treat it when it occurs. There’s plenty of information online on how to treat nosebleeds so I advise everyone who has this problem to talk to the doc, then go look some stuff up.

 

I wanted to mention also, for any reader who has a Power Port installed, that there are days when there will be some problems with them. Yesterday was a classic — the nurse succeeded in getting an initial draw, but when she went to take the blood for the blood tests, nothing was coming out. We tried various positions to see if she could get blood flowing, but nothing worked. For the sake of time, then, we took blood out of my arm (my veins there have improved so we were able to do that after two stiks). The port cooperated for the inbound Chemo drip– the nurses tell me that some days you have problems even with these new Ports. My blood pressure by this time had shot up to 194/99, I just hate getting stuck, and our nurses are good ones. Pressure is pretty much back to normal today so it’s another hill climbed. Another time this happened she had time to do a saline flush which freed up whatever was causing my body to stall like that — there are days when that happened even with drawing blood with a needle, my veins (esp. on my left side) just have a mind of their own.

 

 

 

 

Chemo 18, December 17th,2010

Posted in Evidence-Based Medicine, Non-Invasive Diagnosis, Sustainable Health with tags , on December 18, 2010 by Leane Roffey Line

Good bloodwork today. It’s about the same as last week so I’m happy. Chemistry was near perfect. Nothing out of range. Today I got Taxol and Avastin, plus the premeds. And, I’m pleased as punch with the new onc, whom I have now christened “Prince Baron”, keeping with the Flash Gordon Theme. He’s got the keys to the kingdom of Mongo for sure. Bright and knows how he wants to do this medicine. He’s young, but both my husband and I are impressed. I’ll miss Flash, of course, but he’s leaving us in good hands. Today I filled out his forms — which got me wondering about how far along we are in this country with computer based electronic medical records. That’s a project I started earlier in the year but had to give up when I went in for radiation over the summer (it turns the brain into chemofog country — I couldn’t do anything really serious at that point but just tolerate the radiation, and get over a bad case of bronchitis). I’ll have to get back on it now that I can think again and my energy level is increasing.

Facts are facts, I may never be cured of this cancer, but there are ways to beat it down, and I’m pursuing every avenue I can to do so. A wise woman remarked to me in an email today on advanced cancer — you can’t fight it, you have to survive it. That remark came from personal experience and I thank her for sharing it.

Joule Watt

 

 

A full-body PET scan; An Adventure in Cost Accounting

Posted in Adhocracy, Business & Economy, Evidence-Based Medicine, Non-Invasive Diagnosis, Sustainable Health, Uncategorized on December 8, 2010 by Leane Roffey Line

12/8/2010. Very few reasons will get me up early in the morning, but having a full body PET scan scheduled at 8 am is one of them. The scan, complete with radioactive injection, went super smoothly, and I’m looking forward to the interpreted results this Friday at my onc’s appointment. About the greatest Christmas present I could have is beating this cancer down, and I’m hoping the results will play true. I’ll update the blog as soon as I find out. The tech and I had an interesting discussion about fees involved, turns out that in spite of them being the truck of choice (traveling to other cities to do these), the fees can vary from place to place since every hospital has its own contract, meaning, when we put the numbers together, there is as much as a $1500 difference between a local small town not too far from here, and doing the scan here. Again, it comes down to a matter of what you can charge, why you charge it and what you’ve been getting away with for years. I’m so hoping that sooner or later medical costs will be uniformly brought in line all over the country. Now, it’s a state thing, and apparently too, a company thing. Every time the machine turns on to manufacture the flouride injectable for this test, apparently whether one container or ten containers of injectible is produced, it’s a $500 charge payable (I assume) to the state. I dunno how much of this all is true but I’ll tell ya what, if I live long enough I’m going to put in my two cents wherever you put it to help people who need fiscal help with these tests.

Also got info from Medicare on the cost of the ARANESEP injection, the number I’m reading is $2400 for the initial company purchase of the drug, not a personal cost to me of “thousands of dollars”. I don’t know what these nurses are being told, but it’s flat wrong to discourage a patient from getting a shot that will help them just because no one is 100% sure the patient can pay for it if it’s not covered by Medicare. I don’t know if it’s just Oklahoma doctors or what, but you cannot apparently trust what you’re being told! I do my best to get my co-pays off immediately, and to spend my money wisely, but I have a creepy feeling these drug prices are coming out of the air for the most part, and it’s all about the money, and not so much about making people well!!!

People, too, remember you are entitled to a copy of your tests, scans, or whatever. Don’t forget to ask for it, because if you have to change doctors for any reason, companies are now charging up to seventy-five cents or higher PER PAGE for your records.

Joule Watt

Living With MBD

Posted in Evidence-Based Medicine, Non-Invasive Diagnosis, Non-Invasive Treatment, Sustainable Health, Uncategorized with tags , on August 6, 2009 by Leane Roffey Line

Metastatic Breast Disease (MBD). It’s a sobering thought, even admidst dissolving of brain tumors by radiation. Advanced cancers perhaps aren’t the death sentences they used to be, still, when taken in all their invasiveness, are things to be respected.

I may always be on some form of chemo. I may be on Tamoxifen, as long as possible. With luck, my tumor marker numbers will continue to go down, until they are part and parcel of my whisper factor, the cancer that makes up my particular MBD.

Radiation oncology has its place to play amidst all the chemicals as well.

In any equation, you have things like overriding pain that has to be controlled — the cancer causes its own little bits of grief after all, and if you’re like me, your cancer is here and there in your body; I’m Stage III, I don’t know how I’d handle it being Stage IV for example. Some people out there are totally brave.

Right now its just one step in front of the other, and slip-sliding into states of head consciousness where I can deal with the enormity of the disease, not only my own process, but my husband having cancer too — we’re certainly not the only two cancer family in the world right now, but the fact that we both have a cancer at this time is pretty rough.

I’m not complaining though, at least we can both move still and are not incapacitated except for the general fatigue that comes from being on chemo meds and roids.

Thanks to a bit of help from some friends we’re managing over here.

I’m debating, after the radiation is over, about breaking into a brand new blog about living with MBD, how people cope, what they can do, etc. I’m giving it serious thought.

Moving Along to Plan B

Posted in Evidence-Based Medicine, Non-Invasive Diagnosis, Non-Invasive Treatment, Sustainable Health, Uncategorized with tags , , on July 20, 2009 by Leane Roffey Line

While my body is recovering from its anemia, we’re moving along in treatment to Plan B, which is receiving radiation therapy for a small mass that’s popped up near critical motor centers in the cerebellum. It’s extremely tiny and we found it just by happenstance. Tomorrow I’ll start a series of short radiation treatments combined with taking the hormone tamoxifen for everything below the blood brain barrier. Since my tumor markers were so good, I have great hopes for this new series of treatments. Most chemo cannot penetrate to the brain itself, so when you find little things like this it is best to address them with radiation. Radiation has now got a 100 year history and has advanced significantly as a treatment for cancer.

This story would be too long to tell in all its detail, but what started out as a lunch trip to the mall on Thursday turned into a dizzying experience, winding up with a trip to the ER, admission to the hospital, a blood transfusion (which was badly needed IMHO), and meeting with my doctors — and some new doctors — resulting in a few more tests and a release home with a clear slate from the vertigo/nausea event of last week. I’ve never spent much time in hospitals and I’m here to tell you, hope I never have to again!

In spite of the hard work of the nurses, much of the labor of patient care is now involved with a series of steps that adds much to the costs of such visits. I am very clear now on what needs to be done to overhaul the system (which we really don’t have), and would not wish a hospital stay, no matter how nice the staff, on my worst enemy.

Lucky for me the Drip Factory has a Death Ray Room with my very own Dr. M*ng the M*erciless — a doc about my own age with 30 years experience that I like very much. He’s also very hip to the infighting games between hospitalists here in our small town, and to my request this morning  of “Get ME OUT OF Here”, he had all accomplished by 2 pm, while saving everyone’s ego. Here the story must end, because everyone is really a good person, and there is no point in continuing on with Plan C when Plan B is now in effect.

Update 1 – 7/21/09 First external beam radiation therapy done today. Painless, quick. Machine used was a Varian 2300 with bells and whistles. I like it. I shoulda told the tech to reload the photons for tomorrow (just kidding).  Plan B updates will be done over  the coming days as updates here. If something significant happens I’ll write a new post, but for now, it’s just lock and load.

Update 2 – 7/22/09 Second treatment today, I’m feeling a bit less disheveled from the hospital experience and a bit more like myself — the hubster and I are still resting and trying to get some food down, but we’re tired, and not young anymore! My sister-in-law, whose on her third year of tamoxifen treatment herself, advises that no one else truly counts in this process save for the medical oncologist and the radiation oncologist at this point. She’s right. I had the distinct pleasure this afternoon of speaking to both these favorite people in my medical world — and giving them their new nicknames: my medical oncologist is Flash Gordon and my radiation oncologist is M*ng the M*rciless. Flash Gordon in the 21st century, he quipped, and yep that’s it — this is the 21st century — save for the equipment in that man’s office — the rest of the world doesn’t exist for me right now. I’m in love with that Varian. If I were younger I’d have pursued a career as a medical physicist in this exciting field. Being an old geezer now, it’s who the hell do I donate my very expensive library of books on biological medicine and quantum medicine I used in my own career up to two years ago, and I think I know exactly who that person is going to be.  Here’s the schtick: In any situation in life, on any given day, you either live or die, survive or not. I may not survive this experience or I may live to see more time, I can’t predict the future. Guys like Flash and M*ng don’t come by anymore, the world is dumbed down beyond belief in this excuse for a banana republic we’re living in — so when you meet people like this, who build organizations like this, and do healing like this, you want to leave the good books to them. They have a “physics department” and a medical physicist who comes down to check on the stuff, awesome staff, and are complete jewels in terms of who they help and what they are doing. Here in the heart of green country, there is a world that really does represent Flash Gordon in the 21st Century.And that’s the joke — it really is the 21st century, and we’re no longer sending rockets to the moon. Things have changed since my time in the brilliance of the space race, in running my own clinic, in persuing the careers, writing the books, doing the research, it will never be the same again. Now, my future time on this planet may be in days or years, but it will most likely be spent in a floating home on a river in Portland, Oregon, taking care of my wonderful husband. Relaxing. Painting, and cooking. Disability takes it toll on us all eventually. Cancer trumps everything.

NP Deb came back today as well, her presence has been sorely missed, but she survived her vacation and is prepping for boards 8/7. We wish her all the best of luck. Deb is one of those exceptional people who has both intelligence and character to reach and communicate with patients. She’s a rare one, our Deb is, and if she reads this, she’ll know how much we truly appreciate her!