Next step, another study!

OK, so it has spread again...onward, and forward. We are still running with the theory that I am still very healthy and strong. My body is still tolerating chemos well, so let's hit it with all that we have.

My Onc believes that we need to do another study. He did NOT say that he was out of ideas on approved chemos. This is not the case. The reason being is that studies have very small windows of availability. You have to get in while the study is going on. What is going on with a patient makes that window smaller. I as a patient must meet certain criteria.

The criteria for this particular study is 1- must have locally advanced, or metastatic breast cancer- check, 2-must have received between 2 & 7 previous chemo treatments for progressive or recurrent breast cancer-check (I'm at 3), and 3- who's cancer must contain the GPNMG protein- check. Additionally, can't be under 18, pregnant or nursing, nor can one have any residual side effects from prior chemotherapy treatments, including neuropathy (tingling, numbness, and/or pain in your legs, feet, arms or hands) that is bothersome enough to impact your ability to do ordinary daily tasks, as this may increase the risk of serious side effects. Lucky me, doing good still!

So I have signed the paperwork for the new study. Of course my body must still meet the screening phase as well, but we do not foresee a problem there. The jist of this study for CDX-011, by Celldex Therapeutics, Inc. is better then the last study I think. This is a "Crossover study". Once again, I may or may not get the study drug. If I don't get the CDX-011, I will get a "doctor's choice" drug. This means that my Onc will have chosen out of the available choices, what he will give me. There looks like there are up to7 possible choices, out of 10. One of the seven I have already taken, but the clinical research lady thinks that I may be able to take Paclitaxel again. (You can't take most chemos more then once.) Clinical research lady is GUESSING Doc will choose Ixabepilene. The highlight of a crossover study appears to be that if I get the "Doctor's choice" drug, and my tumor quits shrinking, or continues growing- then I will be able to try out the study drug. Pretty cool!

Once again, this study will go on for an undetermined amount of time. The expectation is that I will be in this study between 1.5 years and 2.5 years, which includes follow up monitoring. Actual chemo time depends on how well it works, and how well my body tolerates it. The study drug is administered 1x every 3 weeks. Lots of extra tests and monitoring of course, no matter which drug I get. For today, I am not even going to bother with the side effects, as we really don't know what kind I will end up with. If you really want to know, follow the links I posted.

Today I am grateful for the sunshine, and the shade in which I am sitting in to blog! I am grateful for the love I am surrounded with. I am grateful for my body feeling well, and a home to feel well in. I am grateful for all  the people cheering me on!

Oncologists

Well, here I am waiting for it to be time to go get a PET scan. Not really thinking about the scan, as it will be what it will be. I can't change what it says. I am having a hard time putting things on hold for it as well. Can't stop living, I have a PET scan coming up. Regardless of what it says...I still have to keep going.

What I am worrying about however, is my doctor. This, I can control. I am suddenly dreading spending the rest of my life with him. I am still hurt over chemo last week. My fault I'm sure- for just being extra sensitive, but still. Did I over step my bounds? Are my expectations too high? Maybe, but I don't think so. Would I be upset if it happened to someone else, hell yes I would! I envision going to my appointment on Thursday. At this appointment Doc will tell me what he saw on PET scan, and give me his new recommendation of course of action. I see myself not even hearing what he has to say because I am still upset about the week before. Can I visualize it being repaired with him? Not really, I feel like I must just be expecting too much out of my doctor. That I was wrong for asking him how to get my needs met. I don't know, and there currently is not anyone in the cancer center that answers these questions. I also can't help but hear my dad's voice ringing in my ear as a child, "You're never going to get along with anyone acting like that"

I have got to get past this. At least enough to get my treatment. Treatment that I can get anywhere. I have medicaid now, so I am apparently not limited to where I go. There don't appear to be many choices of Oncologists in Missoula. So Oncologists now go on the list of factors in what I decide to do with my life.

Is it the meds or me?

Hello all! Today is Wed. and I should be sitting in a chemo chair right now. I am not, as today was the only day to do any training with Carrie and Hope. So we have a training in about an hour, and I will go to chemo tomorrow. Yay, with my regular oncologist!

Not feeling to shabby today. My back is killing me. I can't imagine it is my new bed already, though it may be due to too much time in bed or not sitting right in the computer chair...or not doing enough exercise to stretch my back out. OK, it's not killing me either, but it doesn't feel nice. I don't usually need to take pain meds. I have taken a lot of Tylenol the last 4 days it seems. Seems to go hand in hand with when I get Gemzar now. That seems to have changed over the last couple of months. I don't feel entirely shitty, just not great. Just a little achy, chilly and off. Not like the Taxol made me feel though. It's just faint enough that it always makes me question- is it chemo or am I just being a baby? I hate that! Seems like I have done a lot of that through this journey- is it the meds, or is it me?

OK, change of plans! WRTT just called. Carrie was wanting to know how Hope is doing on her long leash. I think that she would be satisfied with our performance. So, I think that we just skipped a class. We won't meet Carrie today, but we will go to the ranch next week. There we will work more on our "leave its". Whoo-hoo for Hope!