Deb's Update: August 20, 2007 6:15 PM PST
Hi all,
Just another update... are you shocked!? I am...
Tomorrow morning I start cycle 7 of my Temodar. I don't always hate being on a chemo week since that is when I usually feel the best if you can believe it!
I went to UCLA last week for a second opinion and saw the neuro-oncologist Dr. Timothy Cloughsey and a resident but of course I can't remember his name... I was very impressed by the facility and how much they knew about GBM patients. They seem to think that I'm doing very well and wouldn't change anything I'm doing (treatment wise). They say that because I don't have a problem with the Temodar chemo (side effects basically) and my MRIs look good, I should probably continue to use the chemo for TWO YEARS!!!!!!!!!!! Yup, I said it right, I didn't mean to type "one year", they want me to continue for TWO YEARS... I can't help but say that twice since it shocked me! They said that if they see GBM patients that are doing well on the Temodar and are feeling pretty good, are younger and healthier, it can be a two year treatment. Wow, huh? I'll take it but I thought you'd need to know you'd be reading this website for a lot longer than you thought! They also gave me a calendar and what they do when for GBM patients are on the Temodar treatment that I'm on. Days 1-5, Chemo treatment; Day 21 blood work since this is the nadir; and Day 28 more bloodwork before the next cycle starts(and MRIs every 2 months/8 weeks). I found this interesting since neither my surgeon or my oncologist had those exact days defined. So, I will follow their recommended schedule which means I will have to dose Tuesday through Saturday instead of Monday through Friday from this point forward. I trust that UCLA's Dr. Cloughsey knows what to do and when since he sees lots of GBM patients...
My difficult decision that I'm trying to make now is that should I just do EVERYTHING down at UCLA (MRIs, oncology appointments, possibly studies if I become eligible, etc...)? I like my surgeon Dr. Yu at Cedars-Sinai (who follows my MRIs), I like my medical oncologist Dr. Kaul, but do I like the fact that I have to go to both locations? Maybe, maybe not... I'm going back and forth there, so stay tuned. My plan is definitely to get the UCLA neuro-oncologist the pathology slides (contains tumor) or the block (again, contains tumor) from Cedars-Sinai just so that they know what that damn tumor looked like! They also want to see my MRI before my first brain surgery so that they can see what it looked like there as well. They said they know a lot more about a tumor with the slides/block and the initial MRI. So, I'm working on that stuff at this point just in case I decide to go there again. Again, stay tuned.
Lots of interesting things going on in terms of earthquakes... Last week I felt the second one that we've had about 30 miles from here in Chatsworth! The one in Chatsworth prior to that was the one that dad and I felt while we were sleeping...This time, it was while I was at my desk working... just things that make me go hhhmmmm? Of course I now think I should wonder what's next earthquake wise (I'm obviously not a CA person, so I don't know what to expect!). I'll keep you posted on that one. I think it's actually kind of interesting so I go onto the earthquake websites here and there just to see what's going on around CA... I look at the locations and the magnitudes... kind of crazy but interesting to me... maybe I should be a weather person!!! That could be my next job, huh?
Now that I've talked about a next job, here is what is going on at Amgen... Amgen is not doing as well as expected these days in terms of revenue due to their drug Aranesp. They have done many, many press releases which basically can be read by any of you, but here's what you need I can't stop thinking about: They're going to be laying off 12-14% of the employees... we all don't know where they're going to cut yet. I do not seem to be as nervous as most people are because I just think everything going on these days around me happens for a reason. I should know what will affect me, my role, my team, whatever, by mid to late September. I will keep you in tuned to that one! But, of course I may need all of you to keep me informed if you find me a job out your way (anywhere, I'll take a job with good medical insurance ANYWHERE!). You Pfizer folks know we've been through this before, so I'm prepared!
On a better note, I have another visitor coming this Thursday night! Jodi is coming back out here for her 4th visit since I was diagnosed... she's a trooper and is such an amazing friend. Of course we do not have major plans yet since she will leave Monday PM... so, my guess is, lots of chatting, dog walking, shopping and eating! Not bad, huh? I can't wait for Jodi to see the house again since lots of stuff in the house has changed after her last visit. Time flies, so If you can believe it just one week after that I am headed to my colon cleansing event, I mean I'm headed to Deepak Chopra "Soul of Healing" event with Ant and Paul :-) I can't help but be intrigued by what the heck the colon cleansing plan is... I think it's basically just eating different types of herbs and stuff, so I will be asking my doc before I figure out if I can do that. If not, no big deal, it'll be lots of meditating, yoga, relaxation and massaging. I probably shouldn't be talking about bowel movements, but hey, I thought you wanted to know what's going on with me these days!!!
Nala, Radar and Joey are still as happy as ever... I'll have to take a picture of what the latest dog trick is... I can't tell you until you see it on a picture, so stay tuned. I'll try to do that this week or next. Joey seems to be looking like a 5 year old cat these days (he's actually 11 if you can believe that!)...he has slimmed down and is springing around the house now... of course Radar is into that since he can herd him! Joe also knows the word "biscuit" now since that's the word that the dogs know in terms of their treat... Joe sure does like biscuits these days too!
That's it for now... time to walk to dogs and prepare for tomorrow's Cycle 7, Day 1.
Love you guys!
Debbie
Monday, August 20, 2007
Friday, August 10, 2007
Deb's Update: August 8th, 2007 8:00 PM PST
Hi all,
Don't hate me because I'm late! Now that I'm back at work and can exercise almost like I used to, my blog playtime has had no choice but to slow down. I look at that as not a bad thing if I'm doing well, right? As you can see, I'm just trying to give you an excuse.... here goes the summary of the past three weeks...
As you all know, I had another great MRI! Thanks to my mom she has already put that on the blog site... That MRI was basically about 8 months post diagnosis so I was stressed. Progression average for GBM people is actually 6 to 9 months so I just kept my hope that I'm still disease free... but, stress isn't easy to avoid as you can imagine. I was signed up to 'go it alone' that day but thankfully Kimmie surprised me at 6:30 AM at the Cedars-Sinai MRI center and relieved lots of my stress. She obviously knows me well and when she spoke to me the night before the MRI, she could tell I was nervous. Dr. Yu also knew I was stressed so his immediate statement to me when he walked into the room, was " Looks great again"... I basically just started spitting words and signs of relief so I made him laugh as usual! Next MRI should be mid September.
I usually have to make an appointment to see Dr. Ahn (my radiation oncologist) who likes to review the MRIs as well. It's always a good thing since it's nice to have someone else's view of what is on that MRI. He was happy with the latest MRI as well and said that he will just see me after every other MRI but would still like to see all of the scans. Another positive thing if he doesn't think he needs to see me after EVERY MRI!
I finished Cycle 6 and have had another ANA done just to see if that is improving now that I'm off of the Bactrim DS for about 2 months. The titer has gone down more but it is still above normal. The first ANA, it was about 17 times normal, the next one it was about 9 times normal and it is now around 4 times normal... I will keep you updated as I continue to see that go down. Interestingly enough, the one item in the ANA lab is that I have an above normal lab result for Lupus in particular. So, of course I started to look into what symptoms I should have for Lupus, what causes it, what can be done, etc. Low and behold, they described that 5% of the drug induced Lupus cases are caused by 6 particular drugs... You guessed it, I have taken one of those drugs: DILANTIN! I was allergic to that damn anti-seizure med so I'm not surprised. It said it would go away once any of the drug are stopped. So, I will follow that of course. Cycle 7 starts in just under 2 weeks. Time sure does fly...Oh, and one more thing... I seem to still be weighing about 132 lbs which is what I will probably stay at while I'm continuing chemo for the remainder of 2007.
I have decided to head to UCLA to see a neuro-oncologist just for a second opinion and the hopes of going onto a research study/clinical trial. I was referred to a certain neuro-onc from several different people since he's the top one in the country.... so, as you can imagine, I will be making an appointment to see him. I decided to request all of my pertinent medical records from Cedars-Sinai and will bring them with me when I see that neuro-oncologist. Hopefully I will be put on an Avastin study which seems to be the up and coming drug for GBM subjects.
As you all know, I was having some dull headaches after I started working. So, of course I asked Dr. Yu and Dr. Ahn what the cause could be and they all said it could be eye straining due to being back at a computer all day. So, off to an ophthalmologist I went... My eyes were still the same as they were last October when I saw her. Not a bad thing, huh? But, she did think that the computer screen could cause my eyes to strain so she said I could either just wear glasses, or slightly change my contact lens prescription. So, I think I will just do some days at work with my glasses on since that seems to have helped.
I was also feeling very tired and was wondering if that is what work also was doing to me... That was not the case and if you can believe it... the Singulair that I was taking was giving me the fatigue!! I was taking it in the morning when I should have taken it at bedtime so of course I have switched that! Now I am less tired during the day which is another good thing...
I have completed a proposal to work from home several days per week... I will have to keep you posted on that one. I know I will actually get more work done since I will not be distracted in a cubicle. I will hopefully know if I can do that in a month or so...
I have continued to do yoga and some light rollerblading with the dogs. It feels good for me and I think they just like to run better than walk! Some days I end up doing a little bit of a longer, skate with more hills which is also better for all 3 of us... The latest bit of exercise was golfing with Dad, Jimmy and Charlie (I can call it exercise when I have done it for the first time EVER!)!!! Barbara, I know you must be impressed with that one... If you can believe it, I'm hooked and may have to sign up for golf lessons. I'm a lefty in my opinion when I golf, play hockey, sweep the floor and anything swinging down... figure that one out! We'll have to see what my golf pro has to say...
I had several upcoming events when I wrote the last blog update and of course some have happened already! My dad and brother Jimmy came out to visit me (and see the Red Sox of course). It's nice to hear them say I look great and seem to be 'normal' again :-) We did lots of stuff within the past week such as golfing, Red Sox/Angels game, Reagan Library, cooking lasagna and pulled pork, playing cards and harassing one another. I'll have to say that poor dad was teased by Jimmy and me but it kept us all laughing which is always a good thing! I have to give myself a pat on the back since I won the game of hearts (a card game) four times! They wanted to keep playing so that one of them could win and low and behold, I was the winner for that card game!!! I must have warn an 'eye patch' Jimmy, right? We were all bummed that the Red Sox lost, but it was impressive how many Red Sox fans there were at the Anaheim stadium!!! I will hopefully be seeing them again if the Sox have to do a playoff game with the Angels here in Anaheim...
Jodi will be coming out here to visit the end of this month (about 4 to 5 days). That should be fun since the last few times we've seen one another there was not enough time to just shop, chat, and eat (that's what we obviously have fun doing together)! I'll let you know how that goes...
I will be headed to Deepak Chopra Resort with Antonietta and Paul the week of Labor Day (September 2nd through 7th). They are taking me to a weekly retreat that is called "Soul of Healing" and it sounds like it will be really great for me. It will be right before my next MRI so it'll be nice to relax, meditate, get massaged, supposed to get our colons cleansed (I think I'll blame my chemo for not allowing me to get my colon cleansed...) AND we will get to meet Deepak himself! Should be quite an event so stay tuned on that one... I am thankful that my old CT dog watcher Caryn will be coming to stay at my house to watch Nala, Joey and Radar. She had moved out West to Arizona about 6 months before I headed out here to CA, so it'll be nice for them to see her again. She also went to see Radar when he was at the Briard Rescue so they are obviously still attached to one another. She will bring Radar's favorite Scottie named Sarama with her so they will all have some fun! Hopefully they won't have to get colon cleanses either!!!
I'm sure that I have forgotten to write about something... But since it's already 10 PM it's time to head to bed since I have to take Dad to the airport at 5 AM in the morning. Again, sorry that I took so long to give an update. It's even harder now to spend time chatting on the telephone since most of you are 3 hours ahead of me and by the time I can chat, you're fast asleep...
Love you guys!
Debbie
Hi all,
Don't hate me because I'm late! Now that I'm back at work and can exercise almost like I used to, my blog playtime has had no choice but to slow down. I look at that as not a bad thing if I'm doing well, right? As you can see, I'm just trying to give you an excuse.... here goes the summary of the past three weeks...
As you all know, I had another great MRI! Thanks to my mom she has already put that on the blog site... That MRI was basically about 8 months post diagnosis so I was stressed. Progression average for GBM people is actually 6 to 9 months so I just kept my hope that I'm still disease free... but, stress isn't easy to avoid as you can imagine. I was signed up to 'go it alone' that day but thankfully Kimmie surprised me at 6:30 AM at the Cedars-Sinai MRI center and relieved lots of my stress. She obviously knows me well and when she spoke to me the night before the MRI, she could tell I was nervous. Dr. Yu also knew I was stressed so his immediate statement to me when he walked into the room, was " Looks great again"... I basically just started spitting words and signs of relief so I made him laugh as usual! Next MRI should be mid September.
I usually have to make an appointment to see Dr. Ahn (my radiation oncologist) who likes to review the MRIs as well. It's always a good thing since it's nice to have someone else's view of what is on that MRI. He was happy with the latest MRI as well and said that he will just see me after every other MRI but would still like to see all of the scans. Another positive thing if he doesn't think he needs to see me after EVERY MRI!
I finished Cycle 6 and have had another ANA done just to see if that is improving now that I'm off of the Bactrim DS for about 2 months. The titer has gone down more but it is still above normal. The first ANA, it was about 17 times normal, the next one it was about 9 times normal and it is now around 4 times normal... I will keep you updated as I continue to see that go down. Interestingly enough, the one item in the ANA lab is that I have an above normal lab result for Lupus in particular. So, of course I started to look into what symptoms I should have for Lupus, what causes it, what can be done, etc. Low and behold, they described that 5% of the drug induced Lupus cases are caused by 6 particular drugs... You guessed it, I have taken one of those drugs: DILANTIN! I was allergic to that damn anti-seizure med so I'm not surprised. It said it would go away once any of the drug are stopped. So, I will follow that of course. Cycle 7 starts in just under 2 weeks. Time sure does fly...Oh, and one more thing... I seem to still be weighing about 132 lbs which is what I will probably stay at while I'm continuing chemo for the remainder of 2007.
I have decided to head to UCLA to see a neuro-oncologist just for a second opinion and the hopes of going onto a research study/clinical trial. I was referred to a certain neuro-onc from several different people since he's the top one in the country.... so, as you can imagine, I will be making an appointment to see him. I decided to request all of my pertinent medical records from Cedars-Sinai and will bring them with me when I see that neuro-oncologist. Hopefully I will be put on an Avastin study which seems to be the up and coming drug for GBM subjects.
As you all know, I was having some dull headaches after I started working. So, of course I asked Dr. Yu and Dr. Ahn what the cause could be and they all said it could be eye straining due to being back at a computer all day. So, off to an ophthalmologist I went... My eyes were still the same as they were last October when I saw her. Not a bad thing, huh? But, she did think that the computer screen could cause my eyes to strain so she said I could either just wear glasses, or slightly change my contact lens prescription. So, I think I will just do some days at work with my glasses on since that seems to have helped.
I was also feeling very tired and was wondering if that is what work also was doing to me... That was not the case and if you can believe it... the Singulair that I was taking was giving me the fatigue!! I was taking it in the morning when I should have taken it at bedtime so of course I have switched that! Now I am less tired during the day which is another good thing...
I have completed a proposal to work from home several days per week... I will have to keep you posted on that one. I know I will actually get more work done since I will not be distracted in a cubicle. I will hopefully know if I can do that in a month or so...
I have continued to do yoga and some light rollerblading with the dogs. It feels good for me and I think they just like to run better than walk! Some days I end up doing a little bit of a longer, skate with more hills which is also better for all 3 of us... The latest bit of exercise was golfing with Dad, Jimmy and Charlie (I can call it exercise when I have done it for the first time EVER!)!!! Barbara, I know you must be impressed with that one... If you can believe it, I'm hooked and may have to sign up for golf lessons. I'm a lefty in my opinion when I golf, play hockey, sweep the floor and anything swinging down... figure that one out! We'll have to see what my golf pro has to say...
I had several upcoming events when I wrote the last blog update and of course some have happened already! My dad and brother Jimmy came out to visit me (and see the Red Sox of course). It's nice to hear them say I look great and seem to be 'normal' again :-) We did lots of stuff within the past week such as golfing, Red Sox/Angels game, Reagan Library, cooking lasagna and pulled pork, playing cards and harassing one another. I'll have to say that poor dad was teased by Jimmy and me but it kept us all laughing which is always a good thing! I have to give myself a pat on the back since I won the game of hearts (a card game) four times! They wanted to keep playing so that one of them could win and low and behold, I was the winner for that card game!!! I must have warn an 'eye patch' Jimmy, right? We were all bummed that the Red Sox lost, but it was impressive how many Red Sox fans there were at the Anaheim stadium!!! I will hopefully be seeing them again if the Sox have to do a playoff game with the Angels here in Anaheim...
Jodi will be coming out here to visit the end of this month (about 4 to 5 days). That should be fun since the last few times we've seen one another there was not enough time to just shop, chat, and eat (that's what we obviously have fun doing together)! I'll let you know how that goes...
I will be headed to Deepak Chopra Resort with Antonietta and Paul the week of Labor Day (September 2nd through 7th). They are taking me to a weekly retreat that is called "Soul of Healing" and it sounds like it will be really great for me. It will be right before my next MRI so it'll be nice to relax, meditate, get massaged, supposed to get our colons cleansed (I think I'll blame my chemo for not allowing me to get my colon cleansed...) AND we will get to meet Deepak himself! Should be quite an event so stay tuned on that one... I am thankful that my old CT dog watcher Caryn will be coming to stay at my house to watch Nala, Joey and Radar. She had moved out West to Arizona about 6 months before I headed out here to CA, so it'll be nice for them to see her again. She also went to see Radar when he was at the Briard Rescue so they are obviously still attached to one another. She will bring Radar's favorite Scottie named Sarama with her so they will all have some fun! Hopefully they won't have to get colon cleanses either!!!
I'm sure that I have forgotten to write about something... But since it's already 10 PM it's time to head to bed since I have to take Dad to the airport at 5 AM in the morning. Again, sorry that I took so long to give an update. It's even harder now to spend time chatting on the telephone since most of you are 3 hours ahead of me and by the time I can chat, you're fast asleep...
Love you guys!
Debbie
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