Archive for the The Green Life Category

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

 

 

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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

Report
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.

DISCUSSION:

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.

IMPRESSION:
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

Chemo #16 The plan

Posted in Bio-IT, Evidence-Based Medicine, Sustainable Health, Wearable Devices with tags , on December 3, 2010 by Leane Roffey Line

Words of wisdom from the onc. He says he likes to look at three things, marker numbers, skin, and how the person is feeling. He’s one of those guys with super proprioception, so when he does the jazz hands over you, he’s picking up a lot of stuff. I also had him physically look at and palpate the skin areas that had been compromised by radiation (a delayed reaction on combining with the chemo), and also my right breast, which has a tiny bit of rough area — and a tiny bit of area that feels hard, though it is softening week by week.

The marker numbers have gone down and are holding — as of today, CA15.3 went to 537.5. This is a wiggle, on 11/11 it measured 478, and on 9/16 it was 523.9. The CA27.29 hasn’t come in yet, but on 11/11 it was 671, down from 838.7 on 9/14. My guess is that it will come in around 725 — In any event I don’t view this as any kind of trend, we will watch the numbers but they are not a complete decision maker.

I spoke again about how much I value a thoracentesis procedure, and we talked about putting in tubes so I could drain the pleura by myself at home. Right now I have that done once a year, there was a blog post on it I put up here some months ago. This all has a distinct humor, because I’m becoming more and more involved with the Steampunk genre, kind of science fiction meets time-independent adventure story, and I already have a port for blood draw, as does Mark,my husband. With the addition of pleural tubing, I’m going bionic one step at a time here.

Weight, good news. Gained 3 lbs. Up to 133. Better news, potassium reads normal (low end may be natural for me), Hemoglobin up to 11 (range 11.6 to 15.9). I will have to bump it up on my own though, because Medicare, according to the onc and staff members, will not pay for a shot of ARANESP unless you are at or below 10. In the words of one of the nurses “this shot costs thousands of dollars, you don’t want to pay for it yourself, do you?” Let me put it this way, if I had the money, I would. If the shot would help, and it seems to, improving the anemia, sure, I’d buy it. More on money for another drug. We’re proceeding with the Avastin, but a person who shall remain anonymous told me today that it could be, depending on what their company does, that they are no longer allowed to give Avastin to breast cancer patients if the FDA cancels approval at their December meeting for combination of Avastin with Taxol. This again boils down to “all about money”. Instead a secondary chemotherapy drug was suggested, Doxil, — my guess is that it’s cheaper. There is no way Avastin can remain off the table, to a patient already taking it, IMHO.

I wasn’t impressed by the fiscal jiggling. I’ll find out about the secondary drug soon, called Doxil, right now, as I told this person, Taxol still working, numbers going down, skin improving, feeling good, looking good, if it ain’t broke, don’t fix it.

Certain vits were suggested, as well as minerals, to help supplement the treatment. Again, the source is not to be revealed, but using Magnesium seems to have a positive effect on Potassium. Anyway, I have Potassium pills, a pill containing Calcium Magnesium and Zinc, a good vitamin for people over 50, and Slow Fe (iron). I’m going to start uping the doses. Yesterday I also bought some homeopathic remedies at an herb store in a nearby town for Sore Throat and Laryngitis, asthma, allergy and cold. With hubby just getting over the latest creeping crud, I don’t intend to get sick with any of that if possible. Now I need to find out which vitamins work well taken with other vitamins and if there is any interaction I need to know about between them and the drugs I have to take.

Other bits: platelets are normal, and the white blood count is holding steady but could be improved. All in all, what’s down is a little bit down, nothing serious, and what’s up is just a tiny bit out of range, and I’m not worried about it.

Thoughts on a possible mastectomy. If it got rid of significant amounts of the cancer, and we could do it when its warmer, I’m going to go for it. When I was first diagnosed, this cancer was considered inoperable. We’ve beat it back to this point, and should the numbers quit working in my favor, surgery would move to the “TO DO” list. My grandmother on my father’s side had one done during her cancer in the 1960s, and she was very miserable, but she weighed a very great deal as well. She lived quite a few years after that surgery in spite of the metastises she no doubt had. I’ll be researching people’s stories to decide if this is a good move for me. The ones I’ve read so far speak of all kinds of things, including physical therapy to combat the scarring that occurs, for example you cannot raise your arm as high as you did, etc. The next moves all sound pretty icky, frankly, and so does the surgery. Onc pointed out the possible risks for and against, and it will be a heavy decision to make, to lose a breast.

Ah well, one day at a time. I just write down all these considerations in my Idea Book, along with anything else I can think of that’s relevant to my life at the time. It’s a good idea, because in rereading stuff I’ve jotted down from the beginning of the year, I can get a good overall pic on how to spend my energy. When you have a cancer no one has ever cured, you must think of things like how to preserve the quality of what’s left of your life, and how to research cures because you know in your heart somebody is very close to something that can help you. It’s like walking through a maze sometimes, because of all the twists and turns in the path. People, esp. medical people, are controlled by their own management, and the things they say all have to be checked out. We can do this now, thanks to the web, but there is so much disinformation you face that it really must be done on days when you can think, and think clearly — these demand rest and a calm mind.

So what do I find on YouTube today, a video of a doc who maybe was a bit camera shy, turning the whole thing at the “end game” over to the people at hospice — how to recognize signs of imminent death, the first being sleeping more than 12 hours per day. Er, I do not think those words meant what he thought they meant. The next phrase out of his mouth was along the lines of “at this point, the hospice people should take over (from the doctor? never clear).

Remind me to pick out a funeral home and prepay. Between the vids, the TV commercials (on cable), the testimonials on the TV commercials, and the mail solicitations, it gets pretty silly here in Ubovia. I just keep my notes. And, I write on this blog my impressions.


Joule Watt

Chemo #6 and the new “temp” doc

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

We like the replacement doc. He addressed issues that were important to me, which I had covered with Nurse Deb prior to today’s meeting, and were pleased to find him intelligent, agreeable to the current program, and willing to work with Deb on our cases (don’t forget Zarkov and I got diagnosed within a month of one another back in April 2009.) I reported to him that I was very satisfied with the current treatment, and settled on an “ain’t broke don’t fix it” philosophy. He will have tumor marker numbers run on the blood tests as of 9/9 so we can perhaps see from that if there are any changes. The tumors continue to shrink. Bloodwork pretty much remained the same, although there was a good improvement in potassium level (back to normal range).

Chemo #6, save for the difficulty today finding a good place to start the IV, went very well. We used the old morphine trick (inject a couple ml into the arm of choice and let it warm up for ten minutes or so) to get the vein. It took five stiks and a lot of careful wiggling, we had to go up near the elbow to get backflow. The weather cooled off outside and it was pretty cool inside too. My body temp was registering around the 97. 6 mark, not unusual for me, so the morphine injection (2 ml) heated the arm nicely and the blood finally flowed well. Seriously, I guess I’ll have to investigate getting a port eventually.

The doctor is a serious, middle-aged guy with good intentions. We liked him. More later as I think of it.

Foods obsessing my appetite this past week included tapioca pudding and rice pudding (Kozy Shack brand), cheesecake, cream cheese and vegetable, Genoa salami, Butterkase, other cheeses, lots of celery and carrots to dip in the vegetable flavored cream cheese, thin crunchy breadsticks, freezer pastry, sausage egg and cheese croissants, sausage and biscuits with plenty of gravy! Zarkov grilled an amazing rib-eye steak yesterday, which we had with onions and mushroom sauce and steak fries. There is plenty left too, so there will be some good food in my future. Hubby really is an amazing cook.

Weight held at 118. The only side effects so far that I had to report to the doc were the falling out of my hair (3/4 out now, def. can’t go without my wig!), and fatigue, which is to be expected. I have instructions, which I will follow to the letter, to call if anything strange happens. Meanwhile, I now get a week off, and the next appt is 9/9/2010.

Other good news, our best friend is coming med-Sept for a short weekend vacation. Hubby’s sister and brother-in-law are also due in , not sure when, so we’ll have some cool company for a couple days.

Joule Watt

New Update

Posted in Evidence-Based Medicine, Sustainable Health with tags , on July 8, 2010 by Leane Roffey Line

Well, you can certainly tell by my bloodwork I wasn’t feeling too well these past few weeks. While not substantially off, the numbers on some scales were skewed. Flash sez the lung irritation may have been caused by the rads, so we are basically done with that — Ming can hit certain spots up the road if they start to be a bother. What he’s done so far is working, and I am on the mend, sorta. We’ve opted to start chemo again on 8/5, with Taxil and Avastin.  Also, I am going today for another reeval and possible thoratencesis on my right lung, Flash wants my lungs as perfect as possible before we restart the chemo. Another good thing is that we may be able to get some genetic tests done — I’m almost 100% positive I will have mutant BRACA 1 and 2, based on family history, and he’s agreed to look into Olaparib for me. I left him with an article on Dr. DeBono and the NEJM article of the trial. I feel really good about it all, and I know that if I die it will not be because we haven’t tried it all, but rather that I just have run out of body.

UPDATE: We just got back from Leane’s thoracentesis. They were able to remove 1.2 liters of brownish fluid from her right pleura. They sent her home but told us to watch for signs of the lung collapsing tonight. She’s resting comfortably now and sipping on hot chicken broth.

— Mark

More later.

Joule Watt

Scientists explore how the humble leaf could power the planet

Posted in Hydrogen Energy, Sustainable Energy on August 12, 2009 by Mark P. Line

Scientists explore how the humble leaf could power the planet

  • Artificial photosynthesis, eh? I guess I’d want to see how it’s going to be more cost effective with no more environmental impact than, say, you know, growing plants.
  • Funny. I submitted a project to the SpaceLab student outreach program back in 1973 when I was still in high school. The idea was to determine the feasibility of using hydroponic green algae as an energy and food source in space. My project was not selected to fly on the satellite.