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!

PET Scan results

OK, So I got my results last week...Thursday to be exact. I have been in computer hibernation since then. Just not ready to share with the whole world yet. Don't ask me why, because I don't know. Just trying to absorb  it all in without feeling like anyone is feeling sorry for me maybe? Oh shit seems to be the general reaction. Mine too. I guess i don't want anybody else to have to think "Oh shit" too?

So here goes. I got settled into my chemo chair to draw labs. I told my nurse I was a little nervous as I was getting PET scan results today. She asked me if I wanted to stay in the chair, or go back to his office to hear. I mumbled something that the chair was fine, he didn't have time for my questions anyways. OK, so I'm a butt hurt ass from last week still. The chair is fine, I guess I didn't really want to be alone in the room with him, as I didn't have anyone with me to hear the results. I guess being in the chemo ward didn't feel so alone to hear what he had to say. Maybe someone else would hear and interpret for me if I needed it.

My Onc came over pretty quick it seemed today. Maybe he was caught up and not so rushed. Maybe he just wanted to get it over with. Maybe he just wanted to let me know, so I could get on with my day outside of the cancer center. In all reality, it was probably just my turn. However, he was much kinder then last time. So he tells me he has positive-negative news. I was hoping for better, but this is about what I thought he would have to say.

Let me start off by explaining that this was a PET scan. So cancer shows as a "hot spot" When the scan gets read, I THINK that it only reads somethings...like the "hot spot" Which is great, this needs to be seen. However, I believe that it doesn't really show a lot in terms of size very accurately. That is what an MRI is for. An MRI takes pictures in slices, and will give an accurate measurement of tumor size. Readers, please help me out here- am I still following along and understanding right?

So the positive first. The positive is that the bad lymph node under my right arm pit is doing good. Good I take to mean as either still showing signs of shrinking, or it is gone away. I'm confused on this, as I can still feel it. Which ever is the case, that was the positive news. The mass on my left chest, and the lymph node under my left collar bone- my Onc considers that one in the same. He says that that is no longer showing signs of shrinkage. He did not say growing again though. This is the part where I was really hoping he would say looked great. Because it feels back to the original size when I first felt it after surgery. Back to the un-understood question...how did THAT get from scar tissue to tumor???? OK, fine...what's next? Next is the bad lymph nodes buried under my sternum. If I understood everything, those are showing signs of growth again. Then on to the worst of the negative. Doc says he now can see a very small spot on my lung. He says it is very small, and he really didn't seem too excited about it. I will explain my interpretation of this in a moment. Wow, soaking it in still. This is the part that I wasn't really prepared for. I always knew that there was a chance it spread more. That's the stuff that I can't worry about much, unless given a reason. In my mind, if I can feel it...then there is an understandable reason to worry a little bit. I try not to get too excited about the unknown things, or I will worry myself into an early grave.

So my mom refreshed my memory about my grandma dying from lung cancer the year that I graduated. This is what I need to hold near and dear to me right now. A couple of years before Grandma died, she went in for a hip surgery. Mom says that the docs did a scan of some sort at this point in time, related to her surgery. There was a small spot on her lung at this time. However, docs were so concerned about her hip, that the ball got dropped on the spot on her lungs. fast forward a year or so, and Grandma is getting sick, and is diagnosed with lung cancer. The doctor went back and looked at that old scan. Doc said that if they had caught that small spot then, that they could have gotten rid of it. Sadly, by the time this was figured out- her lung cancer was too far advanced. So this is the thought that I have to hold onto. My spot on my lung is as small as Grandma's was originally. We will keep plugging away at chemo, and this little spot will go away!

So there it is, no more waiting or guessing. Now we know. I mostly right on what I thought the outcome would be. I wish I was more wrong, but not to be this time. I felt like a bad girl when I went home...I got kicked out of chemo for the day. I didn't really feel like a bad girl, it was just much more fun to say I got kicked out of chemo. Kicked out of chemo, as it is time to clean out my system again, so I can go try a different kind of chemo. Goodbye to Cisplatin and Gemzar, as we just burnt out another drug. 4th chemo regiment down the drain, which equals out to I've tried 7 different kinds of chemo so far in a year and 10 months. I have to quit looking at it in those terms, as that sounds freaky. Yet, I'm afraid to lose count or I won't remember. I don't want to forget how to spell CAT!