Saturday, July 25, 2009

Still Hangin' in There.......

I went to the doctor's office on Thursday (2 days ago) to receive my 2nd injection of the IV chemo drug Velcade. I was so terrified because of what had happened to me after the first injection, and so so so did not want to end up hospitalized this weekend too. Dr. Nair and I had lots to talk about at this visit, but we came to an agreement on my current plan of care. We decided that rather than starting at the normal dose of 103 mg of Velcade, that we would lower the dose I received Thurs to 100 mg. and instead of having the injections twice a week which is the usual protocol, that I would only receive it once a week for now. In addition to lowering the dose, we also developed some pro-active things to do to try to prevent another hospitalization. They are to go back to the office on Fridays after my IV on Thursday, to receive an IV infusion of hydration (as much as I drink water......and it's a ton....) I was still dehydrated when I was admitted to the hospital last week. In addition to the day after hydration, I was also taught to give myself neupogen injections, which I will give myself every day while undergoing this new chemo velcade. Neupogen is the drug I received right before my transplant last year. It is a drug that increases the production of while blood cells, and therefor gives you protection against any bacterial, viral and other infections that are floating around out there. It will give me a protection that the velcade just demolished last week. The problem last week is that the velcade just crashed my WBC, which fight infection, into such dangerous zones, and therefore also started running a temp because of this. To get the neupogen approved by the insurance company will take jumping through a few hoops, since it's an injectable as well as VERY expensive. I don't know how much this is per month as I haven't received any paperwork on it yet, but I know that the oral chemo revlamid I take costs $8,000 a month and velcade is much stronger and more powerful, so I can (no...actually I can't!) imagine what that cost will be. It will probably take about 4 days or so to get this approved, so in the meantime, my whole next week, every single day, will be taken up with doctors appts. On Monday I will go for a CBC (complete blood count) to see where my low platelets are and to determine if I will be going in for a platelet transfusion as well as getting a neupogen shot. Some slightly good news though, is that when I did come home from the hospital last week, my platelets were at 40 (normal 140) but by yesterday they had come up to 54 with no intervention), and then Tues and Wed will be just getting the neupogen shots and Thurs will be IV chemo day, and Friday will hydration and neupogen shots (although I hope to have my own by then and can give them to myself at home) Oh yeah...another change is that instead of the usual prtotcol of 103 mg of velcade twice a week for 2 weeks and then 10 days off, I will be having it once a week all the time. The bottom line is that I am on the right meds to get the MM under control, but the larger question becomes, where is the right balance? I will be on 15 mg of revlamid, 100 mg of Velcade, 40 mg once a week of dexamethasone and coumadin (the blood thinner as chemo causes blood clots). Any and all of these drugs can mess with my blood counts, so he said that our job right now is to play with the dosages until they are right and I can work my way up to the usual dosage and protocols for the velcade which has a proven record of really kciking some MM butt. This could take several months or up until around the holidays, no one knows for sure, since this is NOT an exact science and each person handles things differently. (I'm opting for the several months tops!) It's actually kind of new and weird for me too, as I'm not a "side effects" person.....really ever. This last time was the very first time that I've had more than the usual pesky side effects (low energy etc) from any type of drug I've been given, even through all the stuff I had to take for the bone marrow transplant. Kinda threw me off my game when I had to go the hospital last week, as it was so unexpected too. Well that's where we are right now in bizarro cancer drug world and I just visualize and see myself going through a few rough patches right now, with the promise of getting it right and having LOTS & LOTS of complete remission ahead of me after all this is said and done. Join me in seeing this, won't you? :)

47 comments:

Susan said...

I'm there with you :o) Hang in there girl and keep fighting.Wishing you lots of remission down the road..hope you've ironed out all the bumps in that road..

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Yes, I am there with you!!

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