I thought I would type a quick update on my blog since some people do not read my posts on Facebook but rather on here. Not much has been happening really. This week I started my second round of Temodar, the chemo brain drug. This time I have done fairly well with it - making sure to take the nausea medicine. Last night (Thursday), I did get nauseous and sick once but that wasn't too bad.
Today I had an appointment with the oncologist. Everything is looking good. My bilirubin was a little high so they will be watching that before I start my 3rd Temodar treatment in March. They also gave me a bag of fluids as I was probably a little dehydrated. (I didn't realize that can also make you feel nauseous.) I will have a PET scan in early March and will get the results at my next appointment with my oncologist. My next MRI will not be until the end of March/beginning of April.
Other than being VERY tired lately, I am doing good. I have nights of good sleep and more nights of not so good sleep where I am up for a couple of hours in the middle of the night. I take a lot of morning/afternoon naps lately!
Hope tonight is an uneventful fifth (and last) day of meds for this month!
I believe!
Jodi
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Friday, February 24, 2012
Monday, February 6, 2012
Believing in Miracles - Am I In a Dream World Today? - 02/06/2012
I had an appointment with my oncologist this afternoon. I don't know if this blog is going to make a whole lot of sense as both Kurt and I are kindof in shock so I will try to do the best that I can. I'll give a little history and such with all that has been happening since my last MRI plus news today - hope it makes sense.
In November before we went to Florida, I had a STAT MRI on Wednesday before Thanksgiving due to some seizure activity I was having. We were told that I had 8 brain tumors. Once we returned, I began full brain radiation which ended right before the New Year. In January I had a PET scan which showed that both my hip and liver tumors are still decreasing in size.
Move to January 23rd when I started Temodar, the brain tumor chemo pill. This is the one that is taken 5 days on and 24 days off. I took the 5 days of pills (of which I was vomiting the first night and didn't have any other problems the rest of the week from it because I started taking anti-nausea meds with it at night). Beginning @ Wednesday that week, I started having some other problems. I believe some of it was related to getting dehydrated, having thrush and not wanting to eat/drink, etc. On Saturday morning Kurt called the ambulance to take me to MGH. I had a CAT scan which showed that I had brain swelling. I was in the hospital for a few days and was put back on brain swelling medications amongst many other things. I started to feel a little better each day and was discharged for my oncology appointment that Monday.
The oncologist decided that day to start me on the new BRAF medication since it appeared that there was issues continuing with my brain. On Tuesday last week I had another MRI. I started the new medication yesterday (4 pills, 2 times per day) and took it again this morning. When we met with the oncologist today, she started reading the MRI reports for both last Tuesday as well as in November. Of the 8 tumors that were shown in the MRI report in November, she wrote down 4 of them that are still there. When thinking about it afterwards, we realized she actually wrote down that one was GONE so there are only 3 tumors still there. These are the same tumors that were there in November. Of those 3 tumors, they have all gone down in size. The pituatary tumor that they had talked was very uncommon to have is not there as well. We asked how the tumors shrunk and she indicated it had to have been from either the gamma knife radiation in Detroit in November or the full brain radiation in Marquette in December. She said she would contact the radiologist that wrote the reports to vary the information but said that she is an excellent radiologist so thought the reports were correct. The oncologist decided that I should stop the BRAF medications (this is what she would like to use as a last option if possible) and go back to taking the Temador on February 20th.
(I know it probably is as confusing to all of you as us... but we are BLESSED to have some GREAT news after lots of not so great news!)
So, why was the news so grim when I was in hospitalized ... I was having some sort of brain problems, obviously! The oncologist said that it had to do with brain swelling and activity so we will be tweeking some medications they put me on so that I hopefully will not continue to have problems.
It's a GREAT day... and, I BELIEVE!
In November before we went to Florida, I had a STAT MRI on Wednesday before Thanksgiving due to some seizure activity I was having. We were told that I had 8 brain tumors. Once we returned, I began full brain radiation which ended right before the New Year. In January I had a PET scan which showed that both my hip and liver tumors are still decreasing in size.
Move to January 23rd when I started Temodar, the brain tumor chemo pill. This is the one that is taken 5 days on and 24 days off. I took the 5 days of pills (of which I was vomiting the first night and didn't have any other problems the rest of the week from it because I started taking anti-nausea meds with it at night). Beginning @ Wednesday that week, I started having some other problems. I believe some of it was related to getting dehydrated, having thrush and not wanting to eat/drink, etc. On Saturday morning Kurt called the ambulance to take me to MGH. I had a CAT scan which showed that I had brain swelling. I was in the hospital for a few days and was put back on brain swelling medications amongst many other things. I started to feel a little better each day and was discharged for my oncology appointment that Monday.
The oncologist decided that day to start me on the new BRAF medication since it appeared that there was issues continuing with my brain. On Tuesday last week I had another MRI. I started the new medication yesterday (4 pills, 2 times per day) and took it again this morning. When we met with the oncologist today, she started reading the MRI reports for both last Tuesday as well as in November. Of the 8 tumors that were shown in the MRI report in November, she wrote down 4 of them that are still there. When thinking about it afterwards, we realized she actually wrote down that one was GONE so there are only 3 tumors still there. These are the same tumors that were there in November. Of those 3 tumors, they have all gone down in size. The pituatary tumor that they had talked was very uncommon to have is not there as well. We asked how the tumors shrunk and she indicated it had to have been from either the gamma knife radiation in Detroit in November or the full brain radiation in Marquette in December. She said she would contact the radiologist that wrote the reports to vary the information but said that she is an excellent radiologist so thought the reports were correct. The oncologist decided that I should stop the BRAF medications (this is what she would like to use as a last option if possible) and go back to taking the Temador on February 20th.
(I know it probably is as confusing to all of you as us... but we are BLESSED to have some GREAT news after lots of not so great news!)
So, why was the news so grim when I was in hospitalized ... I was having some sort of brain problems, obviously! The oncologist said that it had to do with brain swelling and activity so we will be tweeking some medications they put me on so that I hopefully will not continue to have problems.
It's a GREAT day... and, I BELIEVE!
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