As you know I left for Vanderbilt on Sunday night.
Monday I headed to the Cancer Center for premed labs (which my nurse forgot to schedule), CT scan, EKG, appt with Dr, and post med labs.
They were able to work me in for labs after I waited for about an hour. After those were done I headed for my CT. I had my favorite tech so that was nice to see her again! After my CT I headed to my EKG, after waiting for about 45 minutes I finally asked what the deal was, apparently the tech had went to lunch and nobody told me. Lovely! So left and went to my Dr appt.
My weight has stayed the same, which is good, vitals were great, white blood cells were NORMAL!!!, platelets were NORMAL!! red blood cells were a bit low, but nothing to worry about, and my cholesterol was a bit high, odd for me, but we looked at the past tests and ever since I started the RO5 it has been high so that is obviously a side effect of the meds.
My Dr came in and we discussed the CT scan. He said he looked at the tumors we had been watching and saw a little bit of shrinkage, but not much. This is ok. This means one of two things, either the tumors are DEAD, or the RO5 has shrunk it as much as it can and right now it is simply holding it off. Either one I am ok with.
One thing the Dr and I discussed were all the nodules that were on the CT scan. At the time of my appt a radiologist had not read my scan. Just my Dr. Even though I feel my Dr is a brilliant man, he did not have years of training reading scans. He did not feel comfortable being able to distinguish between the fat nodules (lipomas) that the meds are causing ad the cancer. So, he just measured the two tumors we have been watching all along and called it good.
Here is where it gets tricky. If a radiologist reads the scan and can't tell the difference between the nodules and cancer, I will be taken off the study. Plain and simple. After some discussion we decided that a PET was needed. On a PET scan cancer will actually light up so it is easier to tell if it is cancer or not.
I think my nurse is starting to understand my predictament with the whole traveling thing and as we stepped out of the room she was already calling to schedule a PET for me. Finally, being a pushy bitch is paying off!!! :)
So, a PET was scheduled for the following day. My flight was changed BACK to my original flight and all was good.
On Tuesday I had my derm appt. I am really pleased with my derm here in Nashville. He is very knowledgeable and very personable. His fellow came in first and examined me. I was able to show him the nodules. I am currently up to 24 nodules. They are under the skin but they present a red discoloration on top of the skin. Some hurt, some do not. Some are large, some are tiny. Some are actually making bruises. Most tend to be in my hip and thigh area. And those are actually the ones that are bruising. I told my friend I probably should not wear a bathing suit. It looks like someone has been beating me!
After I showed the fellow the nodules my derm came in. I explained that they come and go and then I showed him a few. He actually did not think they were lipomas. He did NOT think they were cancer. He felt they were an inflammation of some type, but I don't actually remember his exact words.
I explained that I was having a PET done because the radiologist couldn't tell the difference between the nodules and cancer. He explained that sometimes inflammation will light up on a PET. Which totally freaked me out! So, just to be safe he decided to take out one of the nodules and send it to pathology. He also took off a mole that had been worrying me. It had been changing in color and shape. Probably due to the meds, but like he said, I have enough to worry about!
When the nodule was removed there was absolutely NO sign of discoloration. It was simply all fat. He feels that the RO5 is causing an inflammation in my blood vessels. In another situation he would say stop what is causing the inflammation. In my case that really isn't an option, so for now I just deal with it. I'm ok with that. I have really and truly been through worse. What's a little inflammation!
We should have the results of the PET scan tomorrow morning. My oncologist will take a quick read of it. If he feels the cancer is being kept at bay, the nurse will fax in the order for my RO5 and I can head out.
I'm honestly not worried. I know the meds are working. What I am worried about now is the cost. Since my husband switched jobs that means we have also switched insurance. Which means new deductible. Which means out of pocket. Again. I am sure his old insurance company did a little happy dance when we left. However, I did not waste any time breaking in his new insurance company, did I!!
Some day I will explain how this trial works and what we are expected to pay and what the trial covers. But, for now I am going to bed. Thank you all for you prayers!
4 weeks ago