Well, we got an answer ...

Not the one we wanted, though. I got a letter in the mail today with a denial for the SIR Sphere procedure with the reason given that the procedure is "unproven". So now we have to submit an appeal, and once we submit the paperwork for the appeal, they have 72 hrs. to answer. So tonight we are putting together a comprehensive history of all treatments and scans related to the liver tumor(s) to support our request for treatment. Seems like the doctors would have done that already, but if you want something done right, you have to do it yourself. We hope that the appeal will be submitted tomorrow so that we'll have an answer by Friday. I think I will go crazy if I have to wait over another weekend to hear if I can get this treatment! It's been seven weeks since my last chemo (I was due for my next treatment four weeks ago), so I don't feel like I can wait around too much longer. We may have to give up on this and just get the chemoembolization so that I can get started on systemic treatment again. It's just so frustrating that some nameless person at an insurance company, who has never seen me, gets to decide whether I can try this treatment that three of my doctors are recommending as the best course for me to take!

Aaarrgh ...

We didn't get an answer today, so now we have to wait until Monday, at the earliest, to find out if I am approved for the SIR Spheres treatment. We've been assured that things are moving very quickly (as far as these things go), but it sure doesn't feel like it! It's hard being in limbo ... if I had done the chemoembolization, I'd likely have recovered from it by now. I really hope that I'm able to do this treatment, and that it's worth it after all this waiting!!

Still waiting ....

We thought we might get an answer from the insurance people today, but we didn't. We heard from the person who is handling it that they were asking questions and going back to consider it, which is good news. They didn't automatically deny it, so she thinks we may get an approval tomorrow. It sounds like UIC would get me in for the angiogram right away once we get insurance approval, so we are hopeful that we could get the ball rolling early next week.

I've been off of chemo for almost four weeks now, and while I am enjoying a "chemo break", I'm worried the cancer is too. I got a copy of the final PET scan report, and there were 2-3 abdominal lymph nodes that also showed up on the PET. Systemic chemo is the way to treat them, and I can't start that again until a few weeks after the SIR Spheres procedure. Hopefully the Herceptin is keeping them under control for now.

My hair is starting to grow back now that I'm off the Taxol/Carbo. I have tiny little stubby eyelashes and patchy hair on my head. My eyebrows are still MIA, and until the hair on my head fills in, I'm still wearing hats, but I'm making progress!

Fingers crossed ... I'll have good news to report tomorrow!

The Latest Plan (subject to change ... )

We went down to UIC and met with the interventional radiologist there to find out about and be evaluated for treatment with SIR-Spheres. The treatment is similar to the chemoembolization in that it involves threading a catheter in through the femoral artery up to my liver, but instead of injecting chemo directly into the tumor, tiny resin microspheres (8 times the size of a red blood cell) infused with Yttrium-90 would be injected. They would lodge themselves in the capillaries inside the tumor, blocking off blood flow and access to oxygen and nutrients, and they give off radiation for about two weeks, killing the tumor from the inside. The doctor said that the side effects are less than the chemoembolization and that he has seen better results with this procedure. We were convinced that this would be the best option to try and are excited to get started, but first it has to be approved by our insurance. This could be a problem because the procedure is FDA approved for primary liver cancer and metastatic colorectal cancer only. It could take about a week to hear whether it is approved by our insurance. After it is approved (I'm being optimistic and assuming it will be!), I will have to have an angiogram first to map out the blood vessels in the liver and have a "test run" with a protein of a similar size to the microspheres to be sure that they will go where we want them to go and not anywhere else! Then a week later, I will have the procedure with the SIR-Spheres.

So now we are waiting as patiently as possible to hear back from our insurance. I'm still a little concerned about side effects (doctors always seem to minimize side effects ... I think so as not to put the idea into your head and have it be self-fulfilling), but I'm willing to suffer through some pain and nausea for something that holds some promise of reducing the size of this tumor. They said that if the tumor shrinks enough, we could then zap it with radio-frequency ablation, which *could* then get rid of the cancer in my liver. Wow!

16 April - Latest Plans

Well... we had set up the chemoembolization procedure for today, but the plan changed yesterday afternoon! The interventional radiologist that was going to do the chemoemb. talked to a fellow doctor from University of Illinois and ended up recommending that we first consider an alternate form of this treatment which uses radioactive beads instead of chemo. So, instead of doing the chemoemb. today Sarah and I will go discuss the radio-bead embolization with the doctor at U of I and we'll shoot to schedule either that one or the chemoemb. early next week.

PET results and New Treatment Plan

We went in on Monday for the results of the PET scan. I think we were both nervous because there was the possibility that the PET could show that I had mets that we didn't know about, for instance in my lungs. Usually I think it's better to know than not know, but it would have been quite a blow to find out that the disease is more extensive than we thought. Fortunately, the PET did not show anything in my lungs. It did show the one large tumor in my liver, the spots on my spine and one lymph node just above my collarbone. The lymph node is "new" (maybe not new, but it's the first time we've seen it), but it looks small on the scan and my doctor could not feel it when he examined me. So for now, we're not going to worry too much about it. We need to work on this big tumor in my liver.

My doctor recommended a procedure called chemoembolization. It is performed by an interventional radiologist, who threads a catheter up the femoral artery from the groin to the liver, then into the arteries feeding the tumor. Once he determines the catheter is positioned correctly, he'll inject three different chemo drugs mixed with an oil directly into the tumor. This mixture will essentially soak the tumor in a high concentration of chemo, while sparing the rest of the body from the effects of the chemo. Hopefully, this will at least "stun" the tumor and stop it from growing. It could also shrink the tumor, though they are careful to say that they don't expect to eradicate the whole tumor. Just getting it to stop growing would be considered a success.

We met with the interventional radiologist today, and after he explained the procedure to us and answered all of our questions, we scheduled it for next Wednesday. I will stay in the hospital overnight Wednesday night and hopefully come home on Thursday. Alan's parents are coming up on Tuesday to help us out while I'm in the hospital and recovering. I can expect to feel "under the weather" for 2-7 days after the procedure. I have read about side effects including pain, nausea, vomiting and fever, but the doctor didn't think I would have too much trouble with it (they are always so optimistic about side effects!).

One good thing about this procedure is that it can be repeated over and over again, as long as the artery feeding the tumor stays open. So if it is successful and shrinks the tumor, we could repeat it again in a few months and try to shrink it more. For now, though, the plan is to start a new chemo in a few weeks after I've recovered. The new chemo is an oral chemo called Xeloda. I'll have to take several pills every day, but I won't have to sit for hours getting an infusion. I have read of many people having success with Xeloda, so I'm hopeful the chemoembolization and Xeloda will work well for me.

Although I am a little worried about the possibility of pain and nausea from the chemoembolization, I am eager to get moving on a new treatment that could stop the growth of this stubborn liver tumor. And I'll take this over brain surgery any day!