Changing Medications (Level of Trust Required)

[ProfessorTomoe 1,308]

2 hours ago, ijuin said:

Myelocites . . . those are the ones that produce the insulating myelin sheathes on nerve fibers? If there's a lot of those active, then it does sound like your body has decided that it needs to rebuild some nerves for some reason . . .

What I've found online (and what the hematologist referred to) is this:

"A young cell of the granulocytic series, occurring normally in bone marrow, but not in circulating blood."

The hematologist said (in his "worst case scenario scare the crap out of me" line) that it could be a sign of chronic myeloid leukemia. That's why he's re-running the blood work. It could be something as simple as a minor infection, to which my body is overreacting.

[The Old Hack 2,448]

12 hours ago, ProfessorTomoe said:

What I've found online (and what the hematologist referred to) is this:

"A young cell of the granulocytic series, occurring normally in bone marrow, but not in circulating blood."

The hematologist said (in his "worst case scenario scare the crap out of me" line) that it could be a sign of chronic myeloid leukemia. That's why he's re-running the blood work. It could be something as simple as a minor infection, to which my body is overreacting.

No matter what, I wish you luck and hope you feel better soon. As always, take care of yourself and please keep us posted.

[CritterKeeper 1,102]

15 hours ago, The Old Hack said:

No matter what, I wish you luck and hope you feel better soon. As always, take care of yourself and please keep us posted.

Seconded.  

From your link, "Almost all CML patients respond to treatment with imatinib, and most of these responses seem to last for many years....Common side effects....are generally mild."  That sounds encouraging!

[mlooney 3,417]

Good luck Prof.  My evil twin /me and I don't want you off the list for a long long time. :-)

I've got a shrink visit on Monday.  I just hope he doesn't change meds on me.  I don't think he will, but it's always a bit nerve wracking on shrink day.

[ijuin 572]

When I see you saying "shrink day", it brings to mind what Rhoda and Catalina are currently doing . . .

[ProfessorTomoe 1,308]

5 hours ago, CritterKeeper said:

Seconded.  

From your link, "Almost all CML patients respond to treatment with imatinib, and most of these responses seem to last for many years....Common side effects....are generally mild."  That sounds encouraging!

... until you check out the price for 30 pills. At CVS, with a coupon, it's $8,295.34. For a THIRTY DAY SUPPLY. Farkin' Jeebus!

[CritterKeeper 1,102]

GoodRX.com lists that for CVS but "only" about $4500 at Walgreens, with their coupon.  Do you have insurance to bring your cost down from there, or should we start advertising a GoFundMe to all the gamers who have loved your music for years?

[The Old Hack 2,448]

3 hours ago, CritterKeeper said:

GoodRX.com lists that for CVS but "only" about $4500 at Walgreens, with their coupon.  Do you have insurance to bring your cost down from there, or should we start advertising a GoFundMe to all the gamers who have loved your music for years?

I am bloody well giving to it if we do. I am so fortunate as to live in a country where my health insurance as a citizen covers most of the cost of the medication that would otherwise cost me $500 a month. I can damn well afford to give some of my savings to others who need it.

[ProfessorTomoe 1,308]

Thanks, folks, but let's get the hematologist's report first before starting any GoFundMe deals. I really do appreciate the gesture, though.

3 hours ago, CritterKeeper said:

Do you have insurance to bring your cost down from there

I do have insurance. Don't know what it'd cover, although I do have a yearly catastrophic out-of-pocket limit beyond which everything is covered 100%.

I think.

[mlooney 3,417]

Shrink raised the amount of lamictal I am taking by 50% to 300 mg.  So I get to go into low grade panic over rashes for a while again.  This is my not quite happy with the world face.

[The Old Hack 2,448]

20 minutes ago, mlooney said:

Shrink raised the amount of lamictal I am taking by 50% to 300 mg.  So I get to go into low grade panic over rashes for a while again.  This is my not quite happy with the world face.

Take care of yourself. Maybe spoil yourself with one of your favourite foods. I hope you'll adjust soon.

[mlooney 3,417]

8 minutes ago, The Old Hack said:

Take care of yourself. Maybe spoil yourself with one of your favourite foods. I hope you'll adjust soon.

The problem with lamictal is any change in dose might cause it's damn rash. That's up or down, any change.  Roughly one in fifty thousand of the rash being fatal and one in ten thousand of getting it in general.

[The Old Hack 2,448]

16 minutes ago, mlooney said:

The problem with lamictal is any change in dose might cause it's damn rash. That's up or down, any change.  Roughly one in fifty thousand of the rash being fatal and one in ten thousand of getting it in general.

My wife asks if you can use either Benadryl or Zyrtec without it interfering with the lamictal. Benadryl also comes as a creme. And she strongly urges you to stay hydrated as well as possible. She warns that she is no medical expert, she is merely using what she has learned from her own experiences. She also wishes you well.

[mlooney 3,417]

19 minutes ago, The Old Hack said:

My wife asks if you can use either Benadryl or Zyrtec without it interfering with the lamictal. Benadryl also comes as a creme. And she strongly urges you to stay hydrated as well as possible. She warns that she is no medical expert, she is merely using what she has learned from her own experiences. She also wishes you well.

Not that kind of a rash.  It's a condition caused by taking the drug.  Details here.  Stevens-Johnson Syndrome  (Warning, photo is freaking gross) is almost always caused by taking a drug.

[mlooney 3,417]

On the positive side of my medication, steering away from the possible fatal issues, every thing I take on a regular basis, other than amphetamine salts, is used either on label or off label for treatment of migraines.  Which might explain why I'm getting more "normal" headaches and fewer migraines.

I was also told that taking Retoril (aka Temazepam) and Ataivan (aka Lorazepam) at the same time is at best a "side eye bad thing" and a "Very Bad Thing"¹ if mixed with alcohol in ANY quantity.  He didn't quite say "don't do that" but did say that make sure I have a LOUD alarm clock and not to do that late at night.  Then said "still a side eye bad thing".

¹I heard both the capital letters and the bold text.  He's good at that.  He doesn't quite understand that I don't think rolling 100 twice in a row on d100 is safe odds vs a side effect that will put you in the hospital and after you get it you have a 1:50 chance of it being fatal.  I've done the 2x100 thing at least 3 times in my gaming career.  One another drug side effect he said it was rarer that being struck by lightning.  I told him to check my long term medical history.  He flipped to the front of my rather thick folder.  "OK, bad example, so for you it's being struck again".  This was several years ago, not today.

 

[ProfessorTomoe 1,308]

1 hour ago, mlooney said:

I was also told that taking Retoril (aka Temazepam) and Ataivan (aka Lorazepam) at the same time is at best a "side eye bad thing" and a "Very Bad Thing"¹ if mixed with alcohol in ANY quantity.

Yeah. It's a bummer. A couple of the meds I'm on (e.g., Wellbutrin, Buspar, Trintellix, etc.) are supposed to make you more susceptible to seizures with any amount of alcohol. I haven't had a seizure that I'm aware of, unless you count loud snoring in that category.

On another note, I had more blood drawn today to test for myelocites, metamyelocytes, and whatever chromosomal changes or other signs the hematologist can think of that would explain what he found last week. Now I've got to go to my *regular* doctor on Friday to get blood drawn for Vitamin D levels, cholesterol, diabetes, and a bunch of other stuff that *he's* monitoring me for. Bleh. Too damned many doctors.

[CritterKeeper 1,102]

4 hours ago, ProfessorTomoe said:

On another note, I had more blood drawn today to test for myelocites, metamyelocytes, and whatever chromosomal changes or other signs the hematologist can think of that would explain what he found last week. Now I've got to go to my *regular* doctor on Friday to get blood drawn for Vitamin D levels, cholesterol, diabetes, and a bunch of other stuff that *he's* monitoring me for. Bleh. Too damned many doctors.

Ugh.  You would think they could at least stick you once and get all the blood in one sitting.  Vacutainers FTW! 

[ProfessorTomoe 1,308]

58 minutes ago, CritterKeeper said:

Ugh.  You would think they could at least stick you once and get all the blood in one sitting.  Vacutainers FTW! 

I wish. No, the tests on Friday are going to a separate lab. They wouldn't be able to share blood unless I was in a hospital, having all the tests done under the supervision of one doctor.

I almost wish I still had the PICC line that they put into me back in 2009. They could take blood in the middle of the night without waking me up (unless they talked, which they inevitably did). They even fed me intravenously through the thing when I was still in Intensive Care.

You know, it's weird. When I found out I was diabetic, long ago, I freaked. I didn't do too much better when I found out I had gallstones. Now, although I'm facing something that could be much worse, I don't have the same feeling of dread that I had with the previous two problems. If it's leukemia, it's leukemia—deal with it. If it's nothing, go back to my family doctor and get him to figure out why I'm always tired. Either way is fine with me.

[PSadlon 88]

I really do hope they just come back and some stupid infection. That said you have pretty much the right attitude. Whatever it is worrying isn't gonna help or change anything. You can only really wait for the results and act upon what you find out.

Not at all happy with the runaround my insurance is putting me through. The good news is I have an Otolaryngology appointment Wednesday and an X-Ray & Orthopedic consultation on my shoulder next Tuesday. The bad news is I am still searching for a ophthalmologist who specializes in double vision. So far my insurance suggested retina specialists, cataract specialists, and a glaucoma specialist, I really miss having glasses. I'm also having similar issues with trying to replace my psychiatrist. No one they refer me to seems to accept my plan with my provider or if they do they are no longer accepting it for new patients.

[ProfessorTomoe 1,308]

6 hours ago, PSadlon said:

I'm also having similar issues with trying to replace my psychiatrist. No one they refer me to seems to accept my plan with my provider or if they do they are no longer accepting it for new patients.

National Lampoon did a stage show back in the mid-80s called, appropriately enough, "Class of '86," where they said so many people were crazy that people had to *audition* for a slot with a psychiatrist. Roger Bumpass played the role of the off-stage psychiatrist auditioning potential patients. It was a running gag through the show, and at one point Bumpass through the magic of audio tape, interviewed *himself*. Downright hilarious stuff.

[PSadlon 88]

Apparently Wednesday meant 11/16 not 11/9. The irony is before I found that out. I found out my primary care physician double referred me with 2 ENTs (one of which I've dealt with before and like but can't see before 11/28).

I finally, Finally, FINALLY got in to see an ophthalmologist Friday about my double vision and the news is worse than I hoped but not as grim as I feared. My left eye is 20/150 and not really correctable, the other eye has actually improved a a bit and  is 20/30 farsighted with astigmatism, the difference made my normal misalignment worse past the point of correction with prism and while surgically it could be corrected it's a only a matter of time before I would have the same issue again. The best option is to get a pair of glasses with a frosted lens for the left eye and an updated  prescription on the right. Kinda a kick in the ass after all I went through all those surgeries to save the retina and remove the cataract in the right eye. Being able to see out of both eye albeit out of one so badly and have some sort of peripheral vision on my blind side is better than the alternative. I have a followup to get refracted the actual lens on 12/9 (a minor miracle considering he was triple booked until 12/28 and it's considered a long appointment).

While I was at the ophthalmologist I took advantage of the free hearing test machine they had in the office. While I probably she have thins checked after treatment by the ENT I suspect the significant hearing loss the machine was seeing wasn't very exaggerated. I'/t sometime have issues even without sinus issue even when I'm explicitly paying attention.

Finally two appointments on Tuesday one at Atlantis Diagnostic to X-ray my shoulder, and one upstairs at the orthopedic doctor to see what needs to be done.

[ProfessorTomoe 1,308]

Friday blood test got rescheduled until Monday (11/14). Also going to try and get a refill of my promethazine.

Still no news on the tests from last Monday. Don't know if this is a good or bad sign.

Both Mrs. Prof and I have had zero energy today. I've had a bit of nausea on top of it all.

[PSadlon 88]

Hopefully no news is good news.

[ProfessorTomoe 1,308]

On 11/13/2016 at 11:09 PM, PSadlon said:

Hopefully no news is good news.

I hope so, too, because I still don't have any news and it's been over a week since the blood test.

Saw my primary doctor today, had more blood drawn, freaked him out when I told him what the hematologist said. He told me to call when I had results.

[ProfessorTomoe 1,308]

Still no results. The suspense is getting to me.