Wednesday, December 8, 2010

Update and great news from Kim

I am always amazed at how much time flies by between my blog posts!

I have now had 3 doses of Avastin. The infusions have been every 3 weeks. Around day 3-4 I get a severe migraine headache accompanied by nausea and vomiting. Once it hits me, I am unable to keep any by-mouth anti-nausea or pain meds down, so my poor husband has to give me a Phenergan suppository, so I can then take something for the pain. My "stash" of pain pills (Vicodin) is what's left of my post-op prescriptions from over 4 years ago! I am prone to migraines, but usually only have 1-2 per year. With the Avastin, they have been predictable a few days after the infusion, and sometimes another time or two in between infusions. This has not been good. In bed for 1-2 days in pain or sick. Still, I am alive, and what's one day every few weeks, right?

I continue on Xeloda tablets, 4 in am, 4 in pm, one week on, one week off. My hands are not better, and perhaps a little worse. The tenderness is unbelievable. I am able to type and do anything requiring only light touch -- which is great, because if I couldn't type, I couldn't work at all. But anything that puts pressure on my fingers and palms, hurts. Things such as: opening milk, jars, containers, etc. in the kitchen; opening or packaging boxes at work; grocery shopping (yes, believe it or not, placing things in the cart and then taking them out, and then loading up the van with the bags, hurts and leaves my hands even more tender!); carrying a heavy tote bag using my hands on the handles; pulling up and zipping/buttoning my pants; putting on and tying my shoes; blow-drying my hair; and well, you get the sad, sad point here. You just don't realize how much you use your hands! My hands are also sensitive to very hot or very cold water, so when washing my hands or bathing, I need to take care that the water temperature is just right. Another odd side effect I'm having, related to the hands, is that my cuticles are rising up onto the nail, and they are tough and firm and can't be pushed back! Not attractive, at all! I am not really one to do my nails regularly, so it's not that big a deal to me, but it's really ugly. And lastly, my tops of my hands seem to have more "spots" than usual. Freckles, nevi, whatever they are, they weren't there before. Weird stuff. And also not attractive!

Also, my feet have now joined in with the side effects! The bottoms of my feet are red and are intermittently painful/tender. I am only wearing tennis shoes now to try and be as comfortable as I can, which has helped. A crazy thing that has happened with my feet are that my toes are all messed up. Danny has always suffered with ingrown toenails and pain/tenderness/swelling/drainage at the corners of his nails. I have never, ever had trouble with my toes. Well now we're in the same boat. All of my toes -- every one of them -- are red, swollen, and tender at the sides of the toenails. I treat them kindly by just wearing tennis shoes, and I think that's about all I can do for them.

Thankfully, I have had no more mouth sores. Not sure if it's because of the lowered Xeloda dose or the dietary changes I've made. Probably a combination of the two. My lips remain sensitive to heat. Still using Kids Crest and keeping my spicy food intake down (which is really a sacrifice for me!) I do still get some burning on my lips, inside my mouth, and down my esophagus when I eat even mildly spicy foods, but it's something I'm willing to tolerate once in a while to get some flavor in!

OK, I realize that I've done nothing but complain, complain, complain! Now for the great news. I saw Dr. Green a couple of days ago. She was just giddy with excitement when she gave me the wonderful news that all of my test reports were glowing! On ultrasound, they could NO LONGER FIND the nodules on my back! The chest CT scan showed that the left pleural effusion has "nearly completely resolved," the left lung's upper lobe's metastatic lesions and the chest lymph nodes show "marked improvement," and the mass in the lower lobe of my left lung has "resolved!" The CT of the abdomen showed that enlarged lymph nodes in my retroperitoneal area have "resolved," and it showed "no metastatic lesions in the liver!" My tumor marker (CA 27-29) is 28, down from 41, and now within the "normal" range. This is the most awesome news I've received about my cancer in a LONG time! Even Dr. Green was surprised at the extent of improvement in such a short time period! It's nothing short of a miracle. Evidently, God isn't finished with me yet! Makes all of my side effects very much "worth it" to know that the treatments are doing such a number on my cancer.

The plan is now for me to remain on Xeloda and Avastin for as long as they are working. Hoping and praying that that's a very long time!

I also voiced my concerns to Dr. Green about remaining on Zometa indefinitely, since I know that it stays in the bones forever and can actually cause bone brittleness with long term use. Although I am now getting it every 3 months instead of monthly which I was on for 3 1/2 years, it still concerns me. Mostly because of my age and activity level. Well let's just say my desired activity level! lol. Since there are no studies on Zometa beyond 2 years of use, I, and many other breast cancer patients still living with bone metastases, are living, walking guinea pigs. The last thing I want or need is to start having pathological fractures as a result of my cancer treatment, and not the cancer itself. So Dr. Green is taking me off of Zometa altogether for now, and we'll see how it goes. She said she was perfectly fine with that, and she did not expect any sudden flare up of bone mets issues.

Interestingly, on the way home from this terrific MD Anderson visit, we heard that Elizabeth Edwards had succumbed to breast cancer. She was diagnosed with a stage IV recurrence around the same time as I was, about 4-5 years ago, so it really hit home. Talk about being brought back down to reality! I know everyone's cancer is different, but I also know how fortunate I am to be doing so well.

I guess that's about it for now. I promise to "try" to blog more often, and also to post more about my life outside of cancer. There is more to me than that, but while trying to document my cancer battle, it appears here that it's all-consuming. Well it's not, at least most of the time!