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Author Topic: The Good, The Bad, and The Ugly-Once again, chemo is kicking my @$$...  (Read 4205 times)

Offline daglob

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Test results are back and it's bone cancer. Oddly enough, it is in several places, but it's not stage 4. The doctor thinks it may be the earliest it's been caught on someone, and that was only because I was getting my yearly PET scan. So, he is not concerned, but he is curious about it. He is running more tests (took more blood today) and may have me come back and take some more samples (oh, joy), but he is convinced it can be defeated. Also, the treatment is a series of pills and some shots, but chemotherapy is not part of it.
« Last Edit: August 07, 2020, 11:01:48 PM by daglob »

Offline SickAlice

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Re: The Good, The Bad, and The Ugly, Chapter 2
« Reply #1 on: December 21, 2019, 08:01:29 AM »
Ah jeez. On the other hand glad to hear you get to dodge the chemo bullet at least.

Offline Epimethee

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Re: The Good, The Bad, and The Ugly, Chapter 2
« Reply #2 on: December 22, 2019, 10:26:23 PM »
Ouch. Wishing you the best, Daglob.
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Offline OrWolvie1

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Re: The Good, The Bad, and The Ugly, Chapter 2
« Reply #3 on: December 22, 2019, 10:57:56 PM »
My thoughts and prayers are with you DG. You can win this fight.

Offline daglob

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Re: The Good, The Bad, and The Ugly, Windows 10
« Reply #4 on: January 16, 2020, 05:17:21 AM »
Windows 10 no longer supports my graphics tablet. Isn't that sweet.

Offline daglob

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #5 on: January 21, 2020, 06:31:48 PM »
Well, the good part is that I am officially still prostate cancer free, however the multiple myeloma is here to stay. However, it is exhibiting few of the symptoms is is supposed to, probably because it really is the earliest it has ever been caught. They aren't even sure what stage it is, but it is not very late. I don't have anemia, massive numbers of white cells, and am not urinating protein like crazy. And it isn't curable, but it is treatable.

I'd just as soon have avoided all this.

And my heater is out again. Lenore is not happy, and I can probably look to a bad performance review. Of course, this is the coldest weather we have had so far.

Offline daglob

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #6 on: January 22, 2020, 12:12:54 AM »
And on the good side: my clothes dryer quit working. My brother came over yesterday and was going to check it out, when he noticed that for some reason the plug had worked its' way out of the socket.
« Last Edit: April 16, 2020, 11:06:07 PM by daglob »

Offline daglob

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #7 on: January 23, 2020, 04:17:44 PM »
... and now Windows is randomly crashing my graphics card. It hasn't supported it for months, and I've been using some REALLY old drivers. I guess now it's getting its revenge.

It's been a long year.

Offline BentonGrey

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #8 on: January 27, 2020, 12:29:57 AM »
Bah!  That stinks, DG!  I'm sorry man.  I'm glad that the dryer thing turned out to be simple.  Ha, if only all problems were so easily solved.  As always, you're in our prayers and thoughts, my friend.
God Bless
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Offline daglob

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #9 on: January 27, 2020, 08:19:15 PM »
Oh, great: one of the meds is a thalidomide derivative.

Offline BentonGrey

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #10 on: January 28, 2020, 02:19:42 AM »
Urg....I didn't know that stuff was still around.
God Bless
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Offline daglob

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #11 on: January 28, 2020, 02:41:27 AM »
Apparently, it does have its uses. I can understand using it against cancer, since one of its' problems was that it  constricted the blood flow to developing cells. Still...

Offline BentonGrey

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #12 on: January 28, 2020, 02:47:29 AM »
Yeah, makes sense.  Still, unpleasant connotations, for sure!
God Bless
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Offline daglob

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #13 on: January 28, 2020, 04:41:20 AM »
Apparently, it is also a mutagen. Somehow, I don't think I'd like whatever powers I got from it.

Offline SickAlice

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #14 on: January 30, 2020, 12:51:11 AM »
Windows issue is everyone. They screwed up Explorer in one of their updates recently. My graphics card is taking a hit too and mine is the exact specified for  :ffvstr: so it's a decent card. Else wish we could get you a break, you and my stepdad both. His plus side is the lymph node biopsy came back negative. Still has to take oral chemo for the rest of his days but small victories I suppose.

Offline daglob

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #15 on: January 30, 2020, 01:01:10 AM »
Good for your stepfather.

The most recent turn of events is that Medicare wants to treat this medication as a drug, while the oncologist insists it's a cancer treatment. If it is treated a drug, it is a Class 3 drug which means I pay 40% of the cost... which would run me $2000 a month. If it is a cancer treatment, Medicare pays 100%, which is what they have been doing for the prostate cancer.

But, c'mon; NO ONE is gong to take thalidomide for fun. If you don't know what it is, it causes all sorts of birth defects, mostly along the lines of missing or underdeveloped limbs. I met a "thalidomide baby" when I was in college; he had a few fingers of his right hand growing out of his shoulder.

Oops! Sorry; that's $3000 a month.
« Last Edit: January 30, 2020, 08:54:16 PM by daglob »

Offline BentonGrey

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #16 on: February 01, 2020, 02:59:15 AM »
Man, that stinks, DG.  I'm sorry that Medicare is so stupid.  I hope that they get that sorted out in a more reasonable way.
God Bless
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Offline SickAlice

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #17 on: February 02, 2020, 12:59:45 AM »
Damn system. VA is like that too. They won't cover ultrasound for breast cancer screenings, consider it cosmetic(?) not preventative. So moms got breast cancer of course. So stupid how much red tape is involved with all that, control should be dictated by the people who know, the doctors and the patients. Not some schmucks in a board room. Drug or treatment? Is there really a difference? No one takes anything for fun. I would toss out all mine if I could live that way. Still wish I could get you up to Mayo with my stepdad. The snow driving sucks of course but you wouldn't deal with half the crap from them as you do down there. I've found much of that is different by state personally given my own condition really. I'm a little reluctant since I have a rare genetic condition. On one hand it makes treatment unfounded therefore difficult. On the other it makes me a test subject and doctors want to write papers so whatever I want ends up covered if not by my insurance then by the company that makes the drug or someone. Also though that Medicare is stupid, I put a gold platinum plan in place through a third party in addition to it myself. It's a bill every month but on a sliding scale and doesn't come out to too much and really against what they cost would otherwise be. Just food for thought, as a C patient you certainly qualify to be able to add on to your Medicare without getting a stipulation. Comes out to between forty to eighty a month on average and it makes all the difference. I'm not even charged no more than a three dollar copay for plastic surgery anymore, just saying.

Offline daglob

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #18 on: February 02, 2020, 02:18:51 AM »
I've got two additional plans. Medicare part B is supposed to take care of the cancer treatments, but they want to charge it under Medicare part D.

I've had the same plans for two years with little trouble. I'm thinking I may need to change them.

Offline SickAlice

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #19 on: February 02, 2020, 12:37:32 PM »
Should ask a patient advocate or someone about a supplemental plan. Like the kind where you meet with suit in person for an hour or so and hash out an exact one that fits your needs and budget. I managed to even get dental on mine for fifteen extra a month, worth it.

Offline daglob

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Re: The Good, The Bad, and The Ugly-all sorts of bad and ugly...
« Reply #20 on: February 06, 2020, 04:12:28 AM »
The drug company (which really wants to sell its' drug) found me a grant that will pay for the drug for 3 months. Now, if BCBS counts the copays, I will be in "cataclysmic catastrophic care", and it will eat up all the out-of-pocket expenses for the year. I have heard that lately they have been refusing to count copays because of things like the phase of the moon, the direction of the wind, the color of the sky... well, not really, but they don't really give much of a reason other than "not applicable".

So tomorrow I go get a shot in my stomach, and Friday I take some thalidomide.  :banghead:
« Last Edit: February 07, 2020, 04:54:06 AM by daglob »

Offline SickAlice

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Re: The Good, The Bad, and The Ugly-getting uglier all the time...
« Reply #21 on: February 06, 2020, 09:24:43 AM »
That works, sort of. Same thing happened when I had infusions. The company floated the bill so in return they could get rights to the test results. Worked for me of course since the bill for that process is a nightmare. Sorry about the medicine, you'll get through it though. You're tough.

Offline BentonGrey

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Re: The Good, The Bad, and The Ugly-getting uglier all the time...
« Reply #22 on: February 07, 2020, 04:40:23 AM »
Man, I'm glad you managed to find a way to make it work, but what a frustrating run-around!  I'm sorry you've had to deal with this stuff, DG.  It isn't bad enough that you have to be sick and go through this process; they also make you jump through hoops and pay for the privilege.  Here's hoping the medicine does the trick!
God Bless
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Offline daglob

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Re: The Good, The Bad, and The Ugly-getting uglier all the time...
« Reply #23 on: February 07, 2020, 04:57:28 AM »
Well, I had the first of the chemo treatments, an injection in my stomach, my quarterly injection in my @$$, a bunch of steroids, and they want me to wait until next week for the thalidomide. Now, I get to wait and see if I have a reaction.

Offline BentonGrey

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Re: The Good, The Bad, and The Ugly-getting uglier all the time...
« Reply #24 on: February 07, 2020, 05:04:57 AM »
If so, let's hope it's the development of a healing factor, or at least the power of flight.
God Bless
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Offline daglob

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Re: The Good, The Bad, and The Ugly-getting uglier all the time...
« Reply #25 on: February 07, 2020, 05:40:24 AM »
As I've mentioned before, I wouldn't even mind being able to talk to fish.

The chemotherapy was a surprise. I think it was an alternate to another treatment that they used when the trouble with the thalidomide started. I also have anti-nausea drugs, now, and the first time this was discussed they weren't needed.
« Last Edit: February 07, 2020, 04:53:20 PM by daglob »

Offline daglob

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Re: The Good, The Bad, and The Ugly-Waiting on thalidomide...
« Reply #26 on: February 07, 2020, 05:07:45 PM »
For some reason it was necessary to ship the thalidomide to Memphis before shipping it to Mobile ("♫ From Memphis to Mobile...♪"). They promise it by 8pm, which means regardless of what they say, it could be in town right this minute and if I do anything that keeps me from answering the door (a signature is required, because, hey, it's thalidomide), they will just take it back to the shop... or something; they don't seem quite clear on it.

And a correction: this isn't a bone cancer, it is a blood cancer that eats up the marrow in your bones. It was either caused by the taxotere in my first round of chemo, putting roads and drainage in all those chemical plants over the years, snorting all those construction chemicals and fumes, or a combination. It is still maybe stage 1, but they still aren't sure because they have never seen this stage before.

My orthopedic doctor added some fun knowledge: one of the ways this is detected is when you step crooked, or bump your arm, or something equally innocuous, and you get a broken bone. The marrow is actually a support structure, the cells this cancer replaces it with is just goop.
« Last Edit: February 07, 2020, 08:04:50 PM by daglob »

Offline daglob

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Re: The Good, The Bad, and The Ugly-Waiting on thalidomide...
« Reply #27 on: February 07, 2020, 08:04:00 PM »
Ah! Just got a shipping update; apparently there was no good reason to send the thalidomide to Nashville. It is now scheduled for some time before 8:00pm Monday.

Offline BentonGrey

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Re: The Good, The Bad, and The Ugly-Waiting on thalidomide...
« Reply #28 on: February 08, 2020, 02:25:43 AM »
Better living through chemistry, eh DG?  I'm sorry you've got to put up with all this stuff, man.  I hope that it goes as smoothly as possible.
God Bless
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Offline SickAlice

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Re: The Good, The Bad, and The Ugly-Waiting on thalidomide...
« Reply #29 on: February 09, 2020, 11:59:32 AM »
Wish you could something a little more cutting edge going on but it sounds like the region would prevent you. I swear by gene modification. It changed my life and I can't apply a complaint to it at all.