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!!

More Questions than Answers

Well, where do I start????? When we arrived he asked if I had an appointment. It wasn't obvious to him so I replied yes. He stated that I wasn't supposed to come this week but rather next week. This is news to me. He clearly said come in 1 week after you have the scans. So there I was and he wasn't prepared. My test reports were all over the office, some he never did locate. Everything was the same as far as he could tell but he also didn't have everything. He was kind of like the nutty professor. I am sure he is a great doctor but I was hoping for a more put together figure!

He spoke to one of the doctors that Dr. Eckardt said that he should speak to and the other didn't return his call. No surprise. The doc that did call back said that he recommended a more aggressive approach. Higher doses of methotrexate (same drug) and it would be harsh. He couldn't speak to how I would react but it is a very high dose and it will not be pleasant. It is a shorter run and carries 10% higher success rate.

The alternative is low dose over the course of a year in smaller amounts. The side effects are much less pronounced and it is given over the course of a year or so. The draw backs are that it will occur once a week for the year and it has less of an effect on destroying the tumor cells.

So the choice is ours. He wants us to think it over. Return next week with questions and in the mean time he will present my case to the tumor board and speak to that other doctor to see what he has to say. Scott asked the success rate in general and it is a disappointing 40%. I am starting an uphill battle from the get go.

He gave us some literature on methotrexate and described the protocol (albeit briefly.) If it is going to be low dose chemo, it will be delivered with another chemotherapy drug visbiline (or something like that). Both cases will be followed with a healthy cell boosting drug whose name escapes me at the moment (leucovorum.... something like that. It replaces the folate cycle..) Scott confiscated the literature once I read "can lead to death" on the first page. Not pleasant!!

So I will return next Wednesday afternoon to hopefully get this horror show on the road. I can't say that I am looking forward to it and I hope this time the doctor is prepared when I walk through the door :-)

Stacey

Blood tests, scans and follow up appointments

I had my blood tests on Tuesday. Lots of blood! My CT scans of the chest, abdomen, and pelvis were today. The barium upset my stomach something fierce! That hasn't happened in the past but I am feeling better this evening. The CT scans of my body minus my limbs was to determine if this sucker is contained or spreading. The technician and I have become more friendly so instead of trying to hide her pity for me she gives up the info an little more freely.

My follow up appointment is scheduled for Wednesday in the afternoon. This is either going to be an okay day or an awful day. Not much really to look forward to but I pray for strength to get through it. I know that I can get through whatever they throw at me. I am not going to lie though, I am scared. Hopefully, he will have consulted with the "experts" and they will not have suggested a more aggressive approach.

I'll be in touch!

Thankful for all of you!

I have received so many emails from so many friends offering love, prayers and most of all help. You are all so amazing! I know I can't get through this without all of you. I am so grateful for having each and everyone of you in my life and I know together we will be one awesome army to kick this thing in the pants!!!

Thank you and I love you all!!!!
Thank you for loving me, too :-)

Pathology 101

I received a call from Dr. Polonsky's office this afternoon. Seems he wants to take a birds eye view of my pathology slides for himself. Foothill Presbyterian (where I had both of my surgeries and 4 out of my 5 kiddies were born) has always been amazing. They processed the request within minutes of my fax granting permission. They are off to the chemo doc (Dr. Polonsky) in the morning for his review.

Does beg the question....what is he looking for? Speculation will only bring worry but I can't help myself!

New Doctor

Scott and I met with the hematologist/medical oncologist this afternoon. He was very personable and empathetic but needed to look into what it is that he wants to do with me. Scott tries to reassure me this isn't a terrible thing but with my track record I was hoping for more.

He sent me away with an order for lots of blood work and lots of CT scans. My whole body, in fact! He wants to see if this sucker has spread anywhere else. After an examination, he did seem a tinge worried by some swelling in my throat and when pressing on my stomach my back hurt. I am truly in a great amount of pain. I have never experienced pain like this so something has changed in my body...key will be to find out what.

The plan is to get the scans (yummy potions to drink, mmmm can't wait!) and see him a week after the blood work and scans. Hopefully the scans will be approved quickly and appointment made quickly. I will get on it tomorrow. Once we have all that info he will devise a plan of action.

In the meantime, he has spoken to Dr. Eckardt (expert at UCLA) and Dr. E has given him the names of the doctors he would have liked me to see but the insurance denied. So this new doc has agreed to brainstorm with the experts (next best thing to actually seeing them, I think). He did paint a pretty grim picture of chemotherapy though. I will be hospitalized for a few days while the drugs tear me apart and they put me back together again. This approach doesn't sound anything like Dr. E described so one could conclude they changed their minds. We will go over all of the conditions (he went over elevated temperatures with me several times...says infection could kill me :-( and specifics to me once we have a game plan.

Like I said, he was very personable. He is concerned for me and my family. Lectured me on the merits of letting you all help me, as difficult as that can be, I need to do it! So I will try with all my might. He even pushed me with the skills of clearly demonstrating what I need. No vagueness...I need this from you. Period. He gave lessons on asking how to ask for help.

So as you might imagine, we were there for a while but I feel like he gets how we feel. How this has been such a long road for us and we just want an end to it all. I think what they say, be careful what you wish for...well it just bit me in the a$%! I am very concerned for what these drugs will do to me. How sick I will be....How it will affect the kids...and Scott....so much unknown but the biggest unknown...will this work?!?!?!

He sent me away with some powerful drugs to help manage the pain BUT I can't drive while on them. It will be a challenge since I am a stay-at-home mom to FIVE kids! But he tried and I will try.

You are up-to-date. Next step...CT scan city. They know me well enough there. I'll keep you posted