TGIF!

Even though they added a whole bunch of drugs today I'm still glad it's Friday since it means the end of the biopsies and fine needle aspirations for a while. Although I must admit the ones today were the easiest yet. The worst part was the lidocaine injections, other than that I didn't really feel them at all. Plus I had the same techs all week and it was nice seeing the same faces. The bone marrow biopsy tech is one of my favorite people to talk to so far, although I guess I can't rule out that it's partly the fentanyl doing the talking on my end! From today until Tuesday I only have to go once a day for labs, central line flush, and battery/saline bag change on my new "buddy" (more on my new buddy to follow).

In addition to the biopsy and fine needle aspiration I went to get my hair chopped to make it easier to manage in the short term and as a baby step toward the "bald is beautiful" look that seems to be on the horizon. I asked one of the clinic nurses if she knew a good place to go since she was talking about living in the area, and she gave me the number of her stylist. Mondi was a sweetheart and she gave me a great cut. She's an independent stylist with a cute little studio space, so it was a nice quiet experience. She gave me a serious discount too so she gets an A+ in my book. Let me know how you like the new look!


At 11 inches it's long enough to donate, but I suppose I could have a wig made for myself!


Later in the day it was time to get my "chemo bag" and it definitely isn't a stylish accessory but I do have to carry it around like purse for the next 5 days. It's pretty heavy too so now I have two heavy purses to carry around. One is full of normal purse crap and paperwork I need to have with me, and the other is full drugs, saline, infusion pumps, and a chemical spill cleanup kit..."just in case". Ha...it's perfectly fine to pump it into my body, but if it spills I have to use a special clean-up kit and bring it back for proper disposal! They also gave me a shot of a blood thinner to help prevent embolisms from the thalidomide, and a couple of anti-nausea meds. We headed home only to be called back to say they had forgotten to give me the Velcade that should have been scheduled for today (but got left off somehow). It wasn't on my schedule either, but when I looked back I saw it is part of the study protocol for day 5 so I'm glad they caught it and it was just a quick shot.

Here's me posing with my new buddy in front of one of the myeloma research displays in the cancer center.
So now for the day I'm up to 13 different meds, once I take my thalidomide in a few minutes. We got the thalidomide mix-up straightened out too. The girl at the desk looked horrified that it had happened, but she quickly set it straight. The even owed me $10, because my copay is only $25. This is amazing considering the sticker price for the pack was $3589.16!

I'm still feeling good so far even despite all the drugs and procedures. I'm a little sore from the biopsies and I had a little bit of nausea the first night, and then again after the melphalan, but it was really minor.

Waiting, Back-to-Back Biopisies, and More fun with the Central Line

Yesterday was a looong day.

I had to track down the PA in the morning to find out if they really wanted me to do the vertebroplasty or not. He said they did so I hurried over to my fine needle aspiration appointment (where they were supposed to do both procedures) and signed in. Over an hour and a half later a nurse came out and brought me to a room and said the doctor wanted to talk to me. The doctor it turns out really did not see the urgency in doing the vertebroplasty. He reviewed the previous scans and said I am at risk for a compression fracture, but there was no urgency to do a procedure that would require conscious sedation and recovery. Fine by me since I had two other appointments that afternoon.

After that it still took another hour and half for them to get me on the CT table for the fine needle aspiration. I arrived at 12 for my 12:30 appointment and they weren't ready for me until 3pm. So by the time they got started on the fine needle aspiration I was already 45 minutes late for the bone marrow biopsy. Luckily they were waiting for me by the time I got there at about 4.

After that I headed over to the infusion clinic (an hour and a half late) for my first dose of melphalan . Melphalan is a chemo drug that is a derivative of mustard gas. It attaches itself to DNA and prevents DNA replication in rapidly dividing cells (like cancer cells). It was to be just a "baby dose" so not many side effects were expected.

After the uneventful infusion the nurse was to change the dressing on my central line. The line was thankfully feeling a bit better and the weird sensation subsided, but the adhesive from the dressing was really irritating my skin. The new one felt a little better at first, then it started to get really irritated too.

Later before bed I noticed that the stitches were poking through the film covering it. This wasn't good because it's really important to keep this thing clean and dry and a break like that could let bacteria in. So I covered the whole thing with a sheath they had given me (in lieu of Press'n Seal, which actually works pretty well!) to protect it overnight. I headed in this morning for my daily blood draw and asked them to change it again. She noticed how irritated my skin was and used a different type of cover, but this one is super itchy now too. So I guess I'll have to see if they have any other ones to try.

After that we were free for the day. We checked out the house and it seems like a good deal. It's nothing fancy but well kept and in a nice quiet neighborhood. It's much better than the current place. It has two bedrooms, which will be important when other caretakers are here with me. The owner is really nice and flexible so I think we will go for it at least through the transplants.

Tomorrow will be another long day, I'll get two more biopsies and start SIX new drugs. Altogether they are referred to as DT-PACE, Dexamethasone, Thalidomide, cis-Platin, Adriamycin, Cyclophosamide, and Etoposide.

Dexamethasone is a steroid that targets myleoma cells. Thalidomide has various anticancer properties related to modulating the immune system, but the mechanisms aren't really understood. Interestingly thalidomide was first used to treat morning sickness in woman in the late 50's and was responsible for causing thousands of cases of severe and devastating birth defects. Since that time several other legitimate uses have been found including myeloma treatment. It's very highly regulated. Somehow though the pharmacy still managed to give me another patients prescription for it today...different dosage and dosing instructions! I didn't notice until I was unpacking it when we got home. OOPS! It had a sticker price of over $3K. I hope the poor guy didn't need it today. I have a feeling someone at the pharmacy is going to be in BIG trouble when I bring this to their attention. The Dex and Thal are oral meds, they the other 4 ( cis-platin, adriamycin, cyclophosphamide, and etoposide) are given as an infusion over 4 days so I get the pleasure of getting my "chemo bag" tomorrow. I'm not holding out much hope it will be a stylish accessory. ;p This lovely 4 drug combo consists of more traditional chemo drugs that target the DNA replication process (like melphalan) to prevent replication of cancer cells.

Altogether these drugs aren't expected to make me feel too great, so the next week will probably be a bit rough. We're pretty well settled in now so I think we're ready to bring out the big guns for 4 days. Wish us luck!

Quote for the Day (or Year!)

A dear friend sent this to me today, she said it made her think of me.

I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!
~Dr. Seuss

I have indeed bought several big bats...thanks Danielle!

Opiates on a stick.

The fentanyl lollipop is standard fare around here for the bone marrow biopsy. Definitely an interesting drug delivery mechanism, but it works for me.

Thought I'd add this funny picture of me holding it that day that Alex took.

My Other Companions

Iron Man and Wolverine. Not a bad pair to have on my side.

Central Line

Today I had the pleasure of having my very first central line put it. The experience itself wasn't bad at all, but so far having the line is not my favorite thing. It's not painful, but it's just a weird sensation. I guess it's a little odd that this is my least favorite things so far. The upside to it is that now I don't have to get stuck for blood draws all the time, and I'm all for that so I'm trying to give it a chance. Another patient assured me today that hers felt better after they changed the dressing so I'll wait until tomorrow at least before filing it under total annoyance. It should be interesting trying to keep it dry in the shower. They actually recommended using Glad Press'n Seal.

Tomorrow I'll get another fine needle aspiration AND a bone marrow biopsy to monitor how the Velcade is working. I'm not too thrilled about getting these back to back tomorrow and I'm even less thrilled they want me to do both again on Friday! Hopefully my bones can take it. I can refuse any of them if I want, but the results are important so I don't want to have to do that. As long as insurance pre-certifies them I'll go for it. I have a feeling insurance isn't going to be too thrilled either though so maybe I'll be spared a couple of procedures.

Outside of the clinic related stuff we are slowly managing to find our way around. We've got the grocery store down and we found Target today. We're researching other places to stay since we don't love the furnished apartment we rented. It's adequate but it's a little small and rough around the edges. The carpet is a bit dingy and the dust seems to be kicking up my allergies a bit, which won't be acceptable during transplants. We're supposed to see a small furnished house on Thursday that seems promising. The woman who owns it rents mostly to patients and her mom has myeloma so she's very familiar with the needs of patients. It's two bedrooms and includes weekly cleaning and all utilities. It will be open right as the lease ends here so hopefully it will work out.

Feeling ok so far, just drained from all the running around at the medical center, trying to manage all the information flying at us, and trying to find our way around.

Arkansas, Day One

Started at the hospital bright and early today for a fine needle aspiration of my large sacral lesion. The doctors apparently love this thing, it's the same one the orthopedic oncologist biopsied back in December. I mean I guess at 4.9 cm it's nothing to shake a stick at. They wanted to start with this before treatment to do the gene expression profiling tests on cells taken from the lesion. Previously they did that on a general bone marrow biopsy, but were interested to see if things were the same in the more focal lesion. Luckily I'm a pro at having needles jammed into my bones. ;p

After this I was supposed to pick up some info and check in with the nurse at the clinic. We figured we would have most of the day to finish getting settled in and check out some alternate lodging options (since the place we rented for the month leaves a little to be desired). The nurse told us I could go ahead and randomize and get started instead of waiting (yay!) so it turned in to a full day at the clinic (boo!).

I guess an overview of the protocol is probably in order now that I used the term randomized out of the blue. Basically there are two "arms", or versions of he protocol they are comparing to each other. The standard arm is a bit longer and contains two additional cycles of chemo, the lite arm is a slightly scaled back version. Here is the breakdown:

Standard Arm:
two 11-day cycles of a 7 drug regimen
transplant 1
transplant 2
two 11-day cycles of a 7 drug regimen
3 drug maintenance for 3 years

Lite Arm:
one 11 day cycle of a 7 drug regimen
transplant 1
transplant 2
one 11-day cycle of a 7 drug regimen
3 drug maintenance for 3 years

The Lite arm requires ~ 1 months less "face time" in Arkansas and can shorten the time it takes to get to maintenance by ~2 months. Because of all the logistical considerations we were really hoping for the Lite arm. I wasn't holding my breath since luck hasn't exactly been smiling down on us these past few months, but I did seriously want to hug the nurse when she came back and told us it would indeed be the Lite arm.

I had to meet with the PA first and talk to another nurse, then it would be off to the clinic for my first dose of one of those 7 drugs in the initial regimen. That all sounds simple but somehow it turned into a 5 hour project! The only unexpected thing that came out of that project was a mention of possible needing a vertebroplasty to prevent compression fracture of one of my vertebra. There seemed to be some confusion as to whether this was really necessary, and then some confusion as to why no one had mentioned doing it before. Then after all the confusion died down there was a consensus to have the radiologist review the old PET scan again and make a recommendation. Fine by me, especially now that I see the worlds leading authority (wikipedia of course!) calls the procedure controversial.

The other eventful thing was getting my list of "other medications". These are not chemotherapy drugs, but rather drugs to help keep me from getting sick while getting chemo. This includes an antibiotic, an antifungal, two antivirals, and heartburn medication.

After all that it was time to hurry up over to the infusion clinic for the first dose of something to kill the cancer cells! They told me it would be a quick "push" and I'd be out of there in no time "once they get you all set up"...and it was that getting me all set up part that was the kicker. We waited for about an hour for the drug to be delivered. At least they gave me a heated blanket while I waited, and we chatted with the nice couple in the next bay over. He's 12 years out from his diagnosis.

Finally the drug came, looking very nondescript in a syringe. Velcade, 3.5 mg. Probably >$1000 for the contents of this vial.


It's a newer generation drug called a proteasome inhibitor. It basically mucks up the garbage cans inside your cells and prevents the trash from getting picked up. Cancer cells generate a lot of trash and the buildup causes them to self destruct. Clever right?

It was an entirely uneventful i.v. injection, but the boxing gloves are out and the fight is officially on!