Tuesday, March 31, 2009

Visit with My Doc

I had a check-up with my oncologist today, Dr. K. It went pretty well. I told him about my trip last week to Norway. There's something I haven't shared with my readers yet because this opportunity that was discussed while in Norway is only an idea right now and may not go anywhere, but the fact that the idea was discussed is very exciting and I shared it with him. He could tell that I was pleased and his reply was something like, "it's heartwarming to hear something good after all the bad news that you get when you have cancer".

I asked him about whether or not it's unusual for someone to have low tumor markers like this for as many months as I have. The quick answer is that every case of cancer is different, so it's hard to make any generalizations. However, he did say that lobular cancers, which was what my first cancer was and it's assumed that my second bout was the same kind of cancer (although I'm not sure that was ever verified) tend to be more unpredictable. Lobular cancers also tend to be estrogen-positive and they also tend to metastasize to the skin and the bone. So, in that sense, my cancer is acting predictable. He feels, though, that since I'm doing well, I should just continue doing what I'm doing in terms of taking the Tykerb (err, um, sure) and getting the Zometa injections (they keep my bones strong).

I then asked him if there would ever be a day when I don't have to take any of these drugs and his reply was that I probably would have to continue taking drugs for the rest of my life. There are several new ones coming out, but since I'm doing well on Tykerb (ahem) at the moment, there's no need to switch up anything with my treatment.

I then told him about my theory about sleep. I said that Tykerb does interrupt my sleep - I don't fall into a deep sleep, which is needed for good immune system function. When I don't take Tykerb, I sleep much better (I still woke up a couple of times in the night while I was off the Tykerb). So, my immune system is not able to fight off cancer because I'm not sleeping well, which then creates the need for me to continue taking Tykerb. He seemed intrigued with that idea and said he'd file the information away for a few more months. I think we may reconsider things in August, when I've had a full year with the low tumor markers.

In the meantime, I will have a CT scan soon just to see how things are going and I will see him again in two months. I also have my next zometa treatment next week and will have my tumor markers measured again.

It's still my goal to be NED (no evidence of disease). And, then I plan not to ever deal with this disease in my body for the rest of my life. I'm making as many changes as I can to make sure of that!


Carver said...

Hi Dee,

I think your goal is a good one and with every cancer there are exceptions. Why not you as the exception that goes on to be NED and not need continual drugs. That's what I'm hoping will happen and sending out good vibes for you to have happen.

Good luck with your upcoming scan, Carver

Jill said...

I too have lobular stage IV Breast Cancer, and I wish NED for you ASAP !!! I hope that next CT scan gives you good news.
You say you're making as many changes as possible which is exactly what I am doing. I firmly believe that if we change our bodies chemistry then the cancer will die off never to return. If we can create a healthy body then we can give cancer one stupendous run for it's money !! You just keep up the good work. You're an inspiration and thank you for blogging. I've just recently started myself and feel priviledged to be part of this community of warrior-women. Thank you.

Dee said...

Hi Carver,
You know I wish the same for you, right? I wish even more that your chronic pain issues would disappear so that you don't need to take continual drugs either!

Hi Jill, Thanks for commenting! I just checked out your own blogs. You really do seem to be taking steps to change your life - I like your idea of doing a spa day at home. I'm not much of a gardener, but I do like to color mandalas. I need to start working on my mosaic again, too. I'm also impressed with the changes you're making in your diet. I haven't done too much there except to try to increase the veggies I eat on a daily basis.

Blogging certainly has created a community of support for me and I'm thankful for it, too. You keep up the good work ... all of you are an inspiration for me!