Chemotherapy Has Started

This week I started my "maintenance" chemotherapy. The goal is to keep things stable, just as they are, with no tumors growing or spreading... if they shrink or disappear then bonus! I am on a couple of chemotherapy drugs with very little side effects. The Xeloda may cause the palms of my hands and the soles of my feet to turn pink and peel or develop fissures. The way to try to prevent that is to use a nice, thick lotion several times a day. Finally, I got a lotion foot rub from David yesterday!! It may cause diarrhea but so far that hasn't happened. I tend to constipate anyway (I know... TMI...) which is why I take a fiber supplement every day. But anyway, perhaps that tendency will help prevent diarrhea. Xeloda works by trying to kill the tumor cells directly. I take three pills twice a day, for seven days. Then skip a week. It's one week on, one week off.

I'm also taking Avastin. This drug works in a different manner than Xeloda. It works by preventing the tumor cell from growing its own blood supply. Tumor cells are very greedy and will create a network of blood vessels all for themselves. If they can't do this then they may starve and die. There are really no side effects from this drug. It can prevent healing if I have a large trauma or surgery but that's not the case for me. Avastin is given via infusion every other week, the same week that I take the Xeloda.

I have waited so long to get back into working out and I'm not letting cancer or chemotherapy stop me. I started a Boot Camp workout last week and continued this week with it because I feel just fine. I'm so relieved. I was afraid the pills would upset my stomach or drain my energy but it's not doing that. If I have to do this for the rest of my life (assuming the tumors respond to this therapy) then I can do it.

We did meet with a doctor up at UCSF yesterday. She said that the current treatment makes sense and if it doesn't work then other drugs can be tried. Same stuff we've been told. She explained that CyberKnife isn't considered at this time because it involves radiation and there's nothing to be gained by zapping these tumors since they aren't threatening anything and they may respond to the drugs. If there's a threat then the CyberKnife may make more sense but at this time it would do more harm than good. She is going to refer us to a doctor that may get us in a clinical trial if that route ever makes sense for us. It would only be tried if the current treatment fails.

I think that's all... if I missed anything I'll make another post. :-)

Another MD Perspective

Yesterday morning we met with Dr. Dormady, my current oncologist. We basically decided to do 3 months of a relatively mild chemotherapy... nothing like I was doing before. I will be getting Avastin and Xeloda. I have had these drugs before but in combination with heavy-hitter drugs. I shouldn't experience the side effects from these two like I had before. I'm told I shouldn't expect nausea, fatigue, neuropathy. I'll know more when we get started, which is planned for Monday June 18th. After three months we'll do another set of scans to see what effect the drugs are having on these tumors. Also we'll continue to get CEA blood tests.

Last week I sent an email to my previous oncologist (Dr. Chen) to update her on my happenings and ask her how she would be handling this. She called me and we spoke for a while. I told her during that conversation that the doctor who ordered the CT scan up at Stanford hasn't gone over the CT findings with me and does not intend to do so. She asked me to get her the newest CT scan report and also to bring her the CD of CT scan images from Stanford. Yesterday when she left work she stopped by one of the local imaging centers (where I had my last PET scan done) and reviewed both sets of images with a radiologist there. After she called me again last night (from her home, mind you) I felt much better. Here's what she had to say:

She said I have two very small tumors currently. They are both on my left side. One is in the same area of my surgery last year. One is in my "iliac chain" which I believe is a chain of lymph nodes in the pelvic region. The one that is in my abdominal area is the larger one of the two but is very small. The one in my pelvic region is smaller still. As a matter of fact, it's so small that it's easy to miss on the CT scan. Only when they compare the PET scan and the CT scan do they realize that it's there. Dr. Chen feels like these have been there a while and are growing very slowly and right now they aren't threatening anything. When I read the scan reports they also mention other suspicious lesions that need to be watched but they aren't calling them tumors yet.

After she and I spoke I felt much better about things.

We are still planning to confer with the docs at UCSF. I am expecting a phone call today to schedule that appointment. I honestly expect to hear the same stuff but I owe it to myself to hear it anyway and confirm that the plan is a good one.

Is Dire in the Eye of the Beholder?

Over the past three years, and especially now, I have gotten a lot of support from people all over for what I'm going through. I have had some wonderful responses... and some that left me scratching my head and thinking for days. I'd like to pass on to you a comment that I got a week ago. It made me think and wonder for most of the week. I won't identify who said this, nor even the gender of the person.

So, here's what he/she said upon seeing me for the first time since the latest findings: "You made it seem so dire!"

So, how am I supposed to respond to that?

Here's some of what flashed through my head: "Do people think I'm exaggerating?" "Do people think I am making things up?" Should I try to look more gaunt so I'm more believable?" "Is my situation not as serious as I think it is?"

Up to that point, all of my communication with this person (and most of my friends and family) have been via Facebook and this blog. And it's all pretty much just factual. All we can do at this point is pass on what the doctors have told us and how I'm feeling. And, right now I'm feeling fine. I wouldn't know that something is happening if it weren't for the scans. At the same time I look normal. But the truth is, I've always looked fine. I've never looked sick. Sure, there were times during chemotherapy rounds that I looked tired but my appearance has always told a different story than my medical situation would suggest.

I don't want to suggest that I'm about to die. I may hang around pestering everyone for years to come. As of yet I haven't been given a "time limit" to live, so that's a good thing. We are trying to create a stand-off which will buy me some time until better, more effective treatments are developed.

I guess in closing the reason I'm writing this is that the comment left me baffled. I didn't know how to respond to that. I didn't know exactly what was being said. I'm just getting this off my chest; I know I shouldn't feel like I have to explain why I don't look sickly. I know that my inside and my outward appearance don't match and I know that can confuse some people. I'm also not looking for a bunch of reassuring comments. I just want to be thankful that my appearance holds up well under adverse conditions. I guess it gives new meaning to the phrase: "Don't judge a book by its cover."