Progress

Scott and I headed out again today to visit Dr. Polonsky. He actually had my file ready and had some (although I use the term loosely) information. First, he said he still had a lot of questions (join the club), and he wanted to know what I wanted to do. Scott and I have gone around in circles all week long with this very tough decision. Initially, I was firm about wanting high dose. It was faster, more effective and for shorter amount of treatment time. Scott spoke with a few people who have actually experienced high dose chemo and they advised avoiding it at all costs! So! Here we were and the doctor is asking me what I want to do! Hmmm!

I expressed my concern with being able to tolerate the symptoms. He agreed it would be very tough. I asked what exactly the symptoms would be....silence. I can't say. You will be miserable was his only response. Hmmm...again!

I went on to explain my concern with the change of protocol. Dr. Eckardt (UCLA expert surgeon) said low dose chemo with methotrexate/velbane every week for a year. He spelled out the protocol once in his office and once on the phone. Now he was telling me another doctor said Dr. Eckardt (are you following this confusion??) prefers high dose (that's news to me!) He had an ah-ha moment or something because the light bulb went on and he said, yea that's what I thought, too.

I told him that I was now leaning towards low dose because all the desmoidian (new lingo I am learning...do you love it Karen!) blogs have patients who are going through low dose methotrexate/vinstabiline and not one case clearly defines a "standard" for high dose. He seemed interested in hearing what we found and where we found it. My research assistant and honorary desmoidian (my good friend Karen) has been scouring the internet for info and she hit a gold mine that she has shared with me. Long story short, he wants some of the links so he can investigate and consult with doctors with more experience. So we will share!

We touched on hormone therapy, specifically Tamoxifan and he explained the side effects are both very real and not at all benign. The dose is much higher than that of a breast cancer patient and the risks were very real. So we just glided over that....bye bye! Besides there is no real evidence that it will actually work. Results vary widely.

Cut to the chase, right?! We will meet again on Tuesday to knock out in writing and clear understanding what EXACTLY he wants to do. In the meantime, he will call Dr.'s Forcher (Cedar Sinai Sarcoma expert) and Chowla (Sarcoma expert recommended by Dr. Eckardt) for answers to his questions. I will get him the info from Karen's research. The plan from there is to start low dose chemo on Tuesday, December 8th.

I asked about a port...eeeks! He said, "do you want one?" Ah, no does anyone truly want one??? But more importantly, do I need one? He said, "let me see your veins." After squeezing the day lights out of my arm and me almost passing out (can't say what that was all about..I just froze while he was squeezing away). Apparently my veins are good enough for now. :-) So, no port but not ruled out forever.

BTW, I asked (but I already knew the answer) if he has ever treated someone with desmoids before. Nope! Man, my luck just NEVER seems to run out, does it!?!?! In his credit, he is researching and consulting with the best in our area but I felt as though I needed him to know that I am on to it and he better do right by me and my lawyer husband :-) Catch my drift doc. If you don't know what you are doing...say so and I will be on my merry way...

Next step, blood work on Monday, appointment on Tuesday, and hopefully a second opinion with a real expert. It will be an out-of-pocket expense because my insurance won't pay for me to see one but it will be worth it.

On a funny note, he presented my case at his tumor board and a surgeon who sits on the committee wanted to know why we are fussing around will all of this stuff. Why don't we just do another surgery. Yeah, I laughed, too! They all think they can save me....by cutting out all of my insides!! Even the expert Dr. Eckardt didn't think he could do it.

On a serious note. I am very thankful for all of you, my good friends. I may not see or talk to you every day but I know you are here for Scott and I and the kids. We truly, truly could not get through this ordeal without all of your support. We feel it and we are incredibly blessed.

Happy Thanksgiving!!