Options?

I have two oncologists. One is my treating oncologist, Dr. B. The second is a referring oncologist, Dr. A. We picked these two docs for a reason.

Dr. B. is a man with a hammer. His hammer is named "transplant".

Dr. A. is a man with a paintbrush. His paintbrush is named "maintenance".

And so, I find myself digesting lots and lots of new information because Dr. A. has suggested that my multiple myeloma can be controlled by chemo now that my numbers are where we'd like them to be.

Don't misunderstand. Both docs are recommending that we do the stem cell harvest on Oct 9. There's been no change in that part of the plan. Logically we're at a point of no return for harvest. It's gonna happen.

But the new info suggests that I have 3 options post harvest.
1) Get the transplant immediately post harvest.
2) Get the transplant at some point more than 30 days post harvest.
3) Don't get a transplant and try to maintain the correct blood levels thru a maintenance level of chemo 'forever'.

Maintenance chemo would be via a drug called RevLimid. It's a derivative / cleaned up version of Thalmid (Thalidomide). It supposedly has fewer side effects than Thalmid. Dexamethasome (steroids) may also be involved. This worries me. Anyone who's read this blog knows how I reacted to Thalmid. Similarly, I'm no great fan of Dex (steroids). So, my options boil down to:

1) Transplant
2) Same-old-same-old drugs.

Now this part is gonna sound confusing, but if 1 or 2 aren't effective, then I have to go back to either 1 or 2 again. Yeah, put that in your pipe and smoke it.........

Left turn in Hell.

I'm sitting here shivering uncontrollably with the house temp at 74F and I have a jacket on. Obviously the chills aren't caused by being cold.

Dexamethasone is the culprit. I'm supposed to take my "Batpills" tomorrow morning so I can turn back into a functioning human again. They always make me feel normal for about 48 hours. The other 5 days a week are spent in various stages of having my Batman suit stripped from me while being pummelled by 2x4's. You have no idea how depressing it is to go to bed at night feeling bad.....knowing that even after a night's rest you'll feel worse tomorrow. It doesn't help to know the pattern will continue for the next 5 days.

Of course, there's always hope. When Thursdays come around I can turn back into Batman and help save the world.

Except for tomorrow. The Dex is finished. No more. Not until I'm told I can. Blessing? Yes. Fun? No. Within a week, my system should return to just being plain old Andre. (That's a good thing for me. Dunno if it's a good thing for you.)

I also won't take any more Velcade (the nasty 'real chemo' stuff). I forgot to ask about the Pamidronate infusions, but they only happen once a month and I know I have none scheduled.

So, essentially, I'm completely off the old chemo plan. No Mo CheMo.

You didn't really believe that did you? Remember, the title is "Left turn in Hell."

What's really going to happen is that the doc is sending me upstairs to the 'harvest' center so they can do a complete eval of my current condition. That will involve:

1) Looking at today's numbers, which won't be back until tomorrow.
2) Generating some more numbers of their own.
3) Doing another bone marrow sample. (Bore a hole in your hip and suck marrow from it. Wasn't too fun the first time.)
4) Advising if we should go through with a harvest.
5) Putting in another central line (apheresis catheter) in my chest.
6) Dosing me up with some stuff that will make my bones hurt all the time while the marrow creates all kinds of stem cells. (Three days down before the pain even begins.)
7) Harvest of the stem cells IF this particular stuff works correctly in my body.
8) Change of harvest chemo to something truly nasty if the 'not so nasty' stuff doesn't work.
9) Harvest, collection, and separation of stem cells from the garbage.

And if all the numbers look good......... We'll move from there to transplant. That's a hard right turn into the central part of hell. It'll take me out of action for at least a month. It's "the bad time".

So, it's moving forward finally, but I sorta feel like soldier who's been dealing with IEDs all day on his way to a major battle in a nearby town. Things are bad. They're gonna change. They'll get worse. Eventually everything will be better.

Another bad weekend.

Holy Moley..... It's another bad weekend for the steroid crash. Flu-like symptoms as usual. I feel like somebody's been beating me with 2x4s.

The real problem is that I'm starting to feel like this every weekend. That means my body is getting used to the cycle and reacting to the 'roids in a way that's not fun.

Sorry I'm not being witty. I really feel BAD.

Happy freaking anniversary

Today, September 13, 2007, is the first anniversary of the official diagnosis of Multiple Myeloma.

Positives: I'm still alive.
Negatives: Mengele lives in oncology centers. Read below.

Right now I'm drinking Makers Mark (a gift from my bro and his partner). We're having a party. (NOT!)

Last day of this cycle.

On Thursday I took my 'roids and got a pamidronate infusion and a Velcade infusion. Because of the 'roids, I felt pretty good on Thursday and Friday. I got a lot of work done.

But on Saturday, I started to feel kinda run-down. Sunday morning involved another Velcade infusion and I really went in the dumps. I slept from 4pm to 8am. Yeah, 16 hours.

Monday was HORRIBLE. Bone pain, muscle cramps, diarrhea (99% pure water). I spent most of the day in bed. Now it's Tuesday and I'm still dealing with everything from Monday at about 80%.

I hope it's the Velcade that causes this.... because I'll have a 2 week reprieve until it starts again.

Doggie Dookie

It's confirmed. Velcade and 'roids make me feel like hammered doggie dookie.

I do a Velcade infusion on Thursdays, then I do my Batman steroids on Friday morning. I feel like a million bucks on Friday and Saturday, and then on Sunday mornings I get another Velcade infusion.

On Sunday afternoon, I start to feel pretty bad. Part of it is the Velcade and part of it seems to be the steroid crash. I'm bloated, swollen, and my insides feel like I've been punched...... and then it gets a bit worse. Sleeping is difficult and the problem continues all the way thru Monday.

On Sundays and Mondays, all kinds of colorful stuff comes out my nose.

Hopefully Tuesday (tomorrow) will be OK. I have lotsa work to do. Gotta try to make a buck or three.