Archive for the Evidence-Based Medicine Category

Chemo 11 Day 1, April 21,2011

Posted in Evidence-Based Medicine, Sustainable Health with tags , , , , on April 24, 2011 by Leane Roffey Line

Long chemo today, but I feel a successful one. Bloodwork shows the red blood count improved to 11.00 thanks to the Aranesep shot of a few weeks back, so we decided we didn’t need another one of those just yet. All the rest of the numbers were where the onc wanted to see them. Tumor marker CA15.3 was at 431.1, up just a tiny bit from last time we ran it, so he was okay with that. I got my premeds, Taxol, Avastin, and the Zometa, so it was a long session. It ran from roughly 9 a.m. to 3 p.m. However I feel better overall, so I consider it a success. The antibiotics seem to have cleared up the urinary tract infection, so all that worked. Probably the shortest doctor’s appt. on record, but everything checked out for him, including the lungs. Breathing sounded good he said.

In so far as aches and pains, like most people who have degenerative disc problems, allergies, and aches and pains associated with weather, my joints, muscles, and the rest of me has been right on key with the goofy weather we’ve been having here.

Strange as it seems, the chemo seems to have helped those conditions as well, and I feel like I am moving better than I did .

That’s about all that’s new for this week. Frankly, I”m amazed I’ve made it this far and certainly thank everyone for their prayers and good wishes.

Happy Easter to everyone.

Joule Watt

Chemo 9, Day 8

Posted in Evidence-Based Medicine, Uncategorized with tags , , , , on March 4, 2011 by Leane Roffey Line

This is an easy day, just premeds and Taxol. For lab, we do a bloodwork. All the numbers looked very similar to numbers from the preceding weeks. Sometimes I think with chemo, you just hit a plateau — the body settles into a routine like with everything else. This doesn’t happen always, but sometimes it does. This week I added some Vitamin B complex with C to my vitamin regimen. I’m also still working on the white cell count, it could be a bit higher.

The drip went very smoothly.

When I got home I took a nap. This week, due to shifts in temperature and humidity I had a lot of joint aches. Monday was a particularly bad day, every joint in my body was speaking to me, and I had to take an extra Lortab (hydrocodone) which I don’t like to do, but it cleared up the pain problem. Pain makes you tired, so its best to keep it under control as much as possible.

I’ve been amusing myself by watching a sci-fi serial on Netflix Streaming from the 1990s called “Lexx”. I loved it back then and have an even better appreciation for it now. Hubby got us a Roku, and now I can stream over the TV in the bedroom while I’m resting. Other mini-projects I’ve worked on this week include Esperanto, and some math. Also played a few online games. The way I’ve been handling it all is just to do it in segments, and then when I get tired, just go take a short rest. It seems to work.

It’s March now and I’m glad to see it. This is our anniversary month, my birthday month, and several other event anniversary month, so we celebrate the whole month basically. Special dinners (I have stuffed pork chops in the oven at the moment for example), and some yummy things planned for over the coming weekend.

On 2/28/2011 I sold the car to a worthy individual who was perfect for it. It takes a special person to deal with an old MB, I wrote a short comment on the Chemo 9, Day 1 thread about it so check it out.

Other than that, Mark’s new blood pressure meds are working well, his pressure has been reading really nicely, and we’ve been taking it every other day so he can build a log to show his new internist, whom he greatly likes. We’re still looking for a non-invasive monitor for diabetes testing. Other than that he’s on schedule and doing pretty well.

So, this ends it for this week, the chemo appt for 3/10 will also be short, if approved I will get another Avastin dose with my Taxol. I have the week of 3/17 off, then go back for the next round of chemo on 3/24. That will be the month schedule for March, so far.

Joule Watt

Cycle 9, Day 1

Posted in Evidence-Based Medicine with tags , , , on February 22, 2011 by Leane Roffey Line

Bloodwork good, Chemistry good. Had the whole regimen, Taxol, Avastin, and Zometa, plus my premeds. I feel really good today. Even my back aches are better. Nurse Deb put it on the table, she and everyone else with any kind of arthritis or degenerative disc problems felt like hell during this last cold snap. That has little to do with cancer and everything to do with aching backs! I found a Capsaisin patch at Walgreens that really works well. I use the Salon Pas (menthol) small patches as well. I had to switch to Flexeril in the afternoons, and am down to one, maybe two Lortabs in the am and pm. I’m also trying more exercise and I think that’s working. I see so many women in my age group and lower who are just bending over, I don’t want to wind up like that! I’ve got my belt on today, it’s a good sturdy back support belt and I’ll wear it under my hoodie, have to go shopping. All the snow is almost melted, at least you can walk on the ground now. It’s a bit cooler today, but yesterday it hit almost 70 and is due to get there again in a few days.

That’s all for news for now. I’m hanging in there, so readers, if you are cancer ridden don’t give up the ship. You’re going to have good and bad days, so keep the faith and don’t let it get ya down.

Joule Watt


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.





Dec. 26th, 2010

Posted in Evidence-Based Medicine, Sustainable Health with tags , on December 26, 2010 by Leane Roffey Line

I found out this week that the FDA withdrew Avastin from breast cancer treatment. I imagine if you pay for it yourself (it’s 8000 per month, yep the most expensive drug on the market), your oncologist can still approve it for the now controversial combination treatment with Taxol. No insurer will likely pay for it for a breast cancer application once this goes into effect (15 days?). I’m very disappointed in the decision since the combination has been effective for me. On SSDI, I can’t afford to pay out of pocket. Oh well, we’ll see what Prince Baron has to say on the topic when I see him Thursday coming. It’s the day after Christmas right now and I am going to try to maintain my good mood. We had a wonderful Christmas yesterday, complete with a good meal and presents under the tree, etc. Even sang a few Christmas Carols, even though due to the cancer (I have several patches per the last PET scan of activity) my voice comes and goes.

I consider myself lucky to have made it to this Christmas, actually, and was happy to celebrate the day.

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



Best Christmas Present Yet: Results of PET Scan taken 12/8/2010

Posted in Adhocracy, Evidence-Based Medicine, Uncategorized with tags , , on December 10, 2010 by Leane Roffey Line

This really was an excellent report. Flash got hearty congratulations from the Line Pirate Ship here, he has done an amazing job. The report reads as follows:

Ordered Procedure: PET CT Whole Body

COMPARISONS: 04/05/2010

TECHNIQUE: 15.45 mCi of F-18 FDG was injected into the left wrist and
PET/CT is performed from the skull base to the midthigh. Blood glucose was
87 mg/dl prior to injection. Image acquisition commenced 60 minutes
following FDG injection.


NECK AND THORAX: Further mild decrease in size of large mass base
right-side of neck extending to supraclavicular and right axillary region.
Maximum SUV is similar to previous exam measuring 2.8. No hypermetabolic
lung lesion. No hypermetabolic mediastinal or hilar lymph nodes.

ABDOMEN AND PELVIS: Mildly hypermetabolic mass anterior-medial to lower
pole right kidney is smaller with decreased maximum SUV 4.2. No lesion in
liver. Physiologic activity in kidneys, bowel, bladder.

BONES AND SOFT TISSUE: Decrease in hypermetabolic subcutaneous nodules
with maximum SUV 3.8 for subcutaneous nodule posterior neck. Decreasing
hypermetabolic activity in upper thoracic vertabra with maximum SUV 3.4,
decreasing hypermetabolic lesion laterally left iliac crest with maximum
SUV 3.9.

1. Decreasing metastatic disease as discussed above.
2. No new lesion identified.

More news: The new onc, who shall henceforth be known here as Prince Baron, heir to the kingdom of Mongo, is super nice. I’m looking forward  to working with him. I will miss Flash, but have a feeling we’ll be seeing him again.

Chemo #17 (just the premeds and Taxol) was very smooth today. All the bloodwork came out on par as well.

Okay, final tumor marker numbers of 12/3/2010 were CA27.29 of 611.9, and CA15-3 of 535.5, the best those numbers have looked since early in 2010.

The plan is to keep on the same track until we have evidence that Taxol/Avastin isn’t working, the FDA strips Avastin from the breast cancer protocol such that Medicare will no longer pay it, or we see a trend in the numbers other than down. We’ll stick to secondary chemo in that case (probably Doxil), but I’m hoping I can continue to stay on Taxol. Taxol seems well-tolerated by my system.

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