Posted by Penny on 9/24/2009, 11:39 pm
70.191.194.45
Hey Gals,
Started my second round of the new drug today. Counts were doing good and tx went smoothly. 
Riding the roids tonight but I'm used to that. Sorry newbies, as the vets know, I ramble when on the steroids. 
Too much energy and nowhere else to put it. LOL 
Had a good chat with my onc. When I asked him about a referral for my neck issues he told me that HE was gonna take care of me. He's ordered some bloodwork to check for the fibromyalgia but said the cancer may interfere with the results. He also ordered an MRI to be done as close to after the first as possible and if that comes back clean, he will send me to a P/T.
In the meantime he gave me a re-fill on my pain meds 
and a script for something to help with the chronic constapation that is a side effect of Navelbine, pain meds and Megace(appetite stimulant). 
We also talked about the clinical trial we've been looking at. I got all the paperwork on it yesterday from Mobile. It's a vaccine that boosts your body's ability to fight the cancer all on it's own. They will have my onc here "wash" my blood (which takes the better part of a day), removing certain cells known to help recongnize cancer cells (sounds like white blood cells since they give you leukine for a couple of days prior). All my blood will be passed through a machine and given back to me less the cells they collect. Those they take back to their lab and tinker with to create the vaccine they'll give me. It's given once a month for three months and I guess that's it. Just follow up visits for two years after to track your progress.
The only common side effect seems to be an injection site reaction. Of course there are some really scary uncommon side effects like drop in blood pressure, shortness of breath, heart beat irregularities and heart stoppage.
They have medical tx's for such a reaction but it's not always successful(there word for "It's not our fault if it kills you."
.
There is also the possiblility that the vaccine could react against healthy cells as well which these side effects sound exactly like chemo side effects. Low counts, fatigue, hair loss, etc. 
The onc's already sent all my records over to USA that they needed and I've signed the consent forms. He did tell me that if I stop chemo and go over to the trial that if it didn't work, I could go back on the navelbine so I don't have to wait to see if this will work. He sounded really excited about the trial. I was also worried that if I got into this trial it may exclude me from any future trials and he said it usually didn't which makes me feel better about risking this one.
As I said, I had gotten a call yesterday from someone regarding the trial and she faxed me the forms and details on it which I promtly signed and sent back. I was shocked when I got home today and had an email from her saying that she had received all my info and pending a few tests, which I know I can pass, I'm qualified for the trial.
She said she would send the orders to my onc so I'm sure that they'll get all the bloodwork they need done with my routine CBC on Tuesday. The only thing that might hold me up till after the first is a brain ct they want. I just had one done a couple of months ago but don't know yet if that is current enough. I've emailed her about it and will probably hear tomorrow.
Course I forgot to ask her if I had to be off chemo for four weeks prior to beginning the trial(which is pretty standard) but even if that's the case, I could be starting the trial as soon as the end of October. But it sounds like this whole tinkering bit after the blood "washing" takes about three weeks so it could be close to Thanksgiving before I actually get my first vaccine.
Being off chemo completely for almost two months is pretty scary though.
This is an agressive, fast growing monster and I do hate the thought of letting it run wild and unchecked for that long. Ugggghhhhh, Getting wishy washy here! Somebody smack me!!! 
Darn, I hate having to make decisions like this. Yes, I know, I've already decided to do it but now comes the "second guessing" phase which will last until it becomes the "I wish I had of" phase. Uuuggghhhh, Time to take a pain pill, a couple of Ativan, eat some kind of chocolate, then whatever else it takes to knock me out tonight. 
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Sorry for causing the eye strain with this monsterously long post and thanks to the gals that had the stamina to make it through it. I'll keep you posted on what happens next. The drama continues...
Hugs,
Penny