Saturday, May 23, 2009
Hair growth
This is 5 days after the prevous post's picture. As you can see, it is coming in rapidly now. I should be able to go without the hat in a couple weeks. Yay!
Thursday, May 21, 2009
Second Opinion Clears Up Misunderstanding
I saw the oncologist my primary care doc suggested I see for a second opinion. It was definitely very helpful if only to clear up a serious misunderstanding I had taken from my treating oncologist after finishing chemo during our April meeting. He had said that I would not be doing further chemo, which led me to believe there were no further chemo options for me.
This guy said there were still lots of chemo options to try, but they are harsher and will take a permanent physical toll. The taxol/carbo did have an effect in shrinking most of my tumors, even if only slightly. I still remain essentially symptom free with a pretty good quality of life so it make sense to stop chemo for now and see how the hormone treatment works for me. The longer I can drag things out with things remaining stable, the better. Only when it becomes clear the tumors are growing again will they consider the next chemo to try. That was a big relief to me. Not that I'm looking forward to being further poisoned by chemo. Better than the alternative, though.
I may also be eligible for the clinical trial I was rejected for in April at some later stage after my disease has progressed. Given that I am doing pretty well now, they probably don't want to put me through their trial at this point.
Bottom line is he agreed fully with all the treatment decisions my regular doc is making. He just explained it better. He did say "I hope your doctor has told you that this is incurable." He hasn't, but it has been crystal clear to me since I did not get a great response to the taxol/carbo chemo. He also said that my doc is a very busy guy in high demand so he needs to see as many people as possible. [He's primarily an expert surgeon] He's always in Seattle's Best Doctors edition of a local magazine. So I'm lucky to have him and have always trusted him. I did the second opinion appointment to satisfy my PCP and Darcy, but it was worth it to get a more thorough explanation. I am definitely more encouraged that I'm not going to croak anytime soon.
The hair is steadily coming in, but still pretty uneven. I dyed it blue (looks purple now) a couple weeks ago which is kind of fun. But there is a big swath down the left side that has only just started really coming in. It also pretty white so compared to the blue, really looks bald. I still expect to lose the hats in a couple weeks. They're just too hot and uncomfortable in the summer.
Maybe I'll post a picture of the new look soon. :)
This guy said there were still lots of chemo options to try, but they are harsher and will take a permanent physical toll. The taxol/carbo did have an effect in shrinking most of my tumors, even if only slightly. I still remain essentially symptom free with a pretty good quality of life so it make sense to stop chemo for now and see how the hormone treatment works for me. The longer I can drag things out with things remaining stable, the better. Only when it becomes clear the tumors are growing again will they consider the next chemo to try. That was a big relief to me. Not that I'm looking forward to being further poisoned by chemo. Better than the alternative, though.
I may also be eligible for the clinical trial I was rejected for in April at some later stage after my disease has progressed. Given that I am doing pretty well now, they probably don't want to put me through their trial at this point.
Bottom line is he agreed fully with all the treatment decisions my regular doc is making. He just explained it better. He did say "I hope your doctor has told you that this is incurable." He hasn't, but it has been crystal clear to me since I did not get a great response to the taxol/carbo chemo. He also said that my doc is a very busy guy in high demand so he needs to see as many people as possible. [He's primarily an expert surgeon] He's always in Seattle's Best Doctors edition of a local magazine. So I'm lucky to have him and have always trusted him. I did the second opinion appointment to satisfy my PCP and Darcy, but it was worth it to get a more thorough explanation. I am definitely more encouraged that I'm not going to croak anytime soon.
The hair is steadily coming in, but still pretty uneven. I dyed it blue (looks purple now) a couple weeks ago which is kind of fun. But there is a big swath down the left side that has only just started really coming in. It also pretty white so compared to the blue, really looks bald. I still expect to lose the hats in a couple weeks. They're just too hot and uncomfortable in the summer.
Maybe I'll post a picture of the new look soon. :)
Tuesday, May 5, 2009
Short Update
It's been a while since I posted so I thought I'd give a brief update, though not much has happened. I do have an MRI scheduled for June 1st and the follow-up with the Cyberknife Doc the next day. I have been having pretty consistent headaches since I saw her last, but they are not getting any worse and there hasen't been any increase in swelling or anything like that. And I don't have them every day... just frequently.
My hair is starting to come back in tantilizingly slowly. :) I do have a HUGE bald spot on the left side of my head [the opposite of where the tumor is] because the radiation site ran from the back of my head over my ear. So the hair is getting pretty thick at the back of my head, then there is a BIG chunk of completely missing hair all the way up the left side of my head. Bummer. It'll mean wearing a hat longer than I had hoped. The front is coming is slower but I remember that from last time too.
I have been feeling alright after 6-7 weeks of no treatment but hormone treatment. Still some stiffnes in my hip, but it's tolerable and hasn't worsened at least. I did get sick on Sunday with a stomach ache and severe diarhea [sorry for the details]. I was worried about getting the flu with my compromised system and a little worried I might have a partial intestinal blockage. I saw my primary care physician yesterday and she said I don't have the flu. More likely gastroenteritis, but she ran some blood tests to make sure there wasn't something else going on. She called today to say things looked fine, except my potassium level is low. She wrote me a prescription for that. I guess that could acount for why I've been weak and tired so much lately. So we'll give the potassium a try and see if my energy picks up any.
She also recommended I get a second opinion on cancer treatment and gave me a referral. She's so nice she got my insurance to approve it already. This guy has an excellent bedside manner so that should help. We'll see if he has any other ideas.
Finally, I've made plans to meet family at Yellowstone at the end of this month. I've never been and my brother-in-law's family has some cabins just outside the park. They will be there and my sister invited me up. So it's turned into a mini-family reunion. I really wanted to see my nephew now cause who knows how I'll be feeling in August at my niece's wedding.
My hair is starting to come back in tantilizingly slowly. :) I do have a HUGE bald spot on the left side of my head [the opposite of where the tumor is] because the radiation site ran from the back of my head over my ear. So the hair is getting pretty thick at the back of my head, then there is a BIG chunk of completely missing hair all the way up the left side of my head. Bummer. It'll mean wearing a hat longer than I had hoped. The front is coming is slower but I remember that from last time too.
I have been feeling alright after 6-7 weeks of no treatment but hormone treatment. Still some stiffnes in my hip, but it's tolerable and hasn't worsened at least. I did get sick on Sunday with a stomach ache and severe diarhea [sorry for the details]. I was worried about getting the flu with my compromised system and a little worried I might have a partial intestinal blockage. I saw my primary care physician yesterday and she said I don't have the flu. More likely gastroenteritis, but she ran some blood tests to make sure there wasn't something else going on. She called today to say things looked fine, except my potassium level is low. She wrote me a prescription for that. I guess that could acount for why I've been weak and tired so much lately. So we'll give the potassium a try and see if my energy picks up any.
She also recommended I get a second opinion on cancer treatment and gave me a referral. She's so nice she got my insurance to approve it already. This guy has an excellent bedside manner so that should help. We'll see if he has any other ideas.
Finally, I've made plans to meet family at Yellowstone at the end of this month. I've never been and my brother-in-law's family has some cabins just outside the park. They will be there and my sister invited me up. So it's turned into a mini-family reunion. I really wanted to see my nephew now cause who knows how I'll be feeling in August at my niece's wedding.
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