Chemo #16 The plan

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


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