@lori-co
Forum Replies Created
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- November 18, 2010 at 5:22 am
Lauren,
I am very sorry to hear about Jenna. Your posts were inspiring for those of us following Jenna's journey. Her legacy will live on through her grace, enthusiasm and fighting spirit.
My prayers are with you and your family.
Lori CO
Stage IV
Grand Junction, CO
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- November 18, 2010 at 5:22 am
Lauren,
I am very sorry to hear about Jenna. Your posts were inspiring for those of us following Jenna's journey. Her legacy will live on through her grace, enthusiasm and fighting spirit.
My prayers are with you and your family.
Lori CO
Stage IV
Grand Junction, CO
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- October 30, 2010 at 5:54 am
Hi Jill,
When I had brain mets the first thing I noticed was that I was forgetful. I couldn't remember where things were in the kitchen or how to shut down my computer even though I use it every day. Over the next several days, I noticed disjointed thoughts with no focus and a disconnect between what I was thinking and writing. I also ran into walls, fell while walking and had a dull headache every morning. The symptoms can vary depending on tumor size and what part of the brain is involved. I've had 3 craniotomies, SRS and partial brain radiation and have not had a recurrence in the brain in 8 months. I would urge Eric to get a brain MRI sooner rather than later to put your mind at ease.
Good luck,
Lori
Stage IV
Grand Junction, CO
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- October 30, 2010 at 5:54 am
Hi Jill,
When I had brain mets the first thing I noticed was that I was forgetful. I couldn't remember where things were in the kitchen or how to shut down my computer even though I use it every day. Over the next several days, I noticed disjointed thoughts with no focus and a disconnect between what I was thinking and writing. I also ran into walls, fell while walking and had a dull headache every morning. The symptoms can vary depending on tumor size and what part of the brain is involved. I've had 3 craniotomies, SRS and partial brain radiation and have not had a recurrence in the brain in 8 months. I would urge Eric to get a brain MRI sooner rather than later to put your mind at ease.
Good luck,
Lori
Stage IV
Grand Junction, CO
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- October 20, 2010 at 4:36 am
Hi Shari,
I had biochemo with Dr. Gonzalez in 2007 when I was Stage III (radical neck dissection w/40 nodes removed, 1 positive). My reasoning was that I was young and otherwise healthy and could withstand the side effects. It's a rough treatment. Unfortunately, I recurred two years after biochemo. Currently in the GSK MEK clinical trial at University and am doing well. Dr. Gonzalez is very good and University is a topnotch facility. Feel free to write to me if you want more info.
Good luck!
Lori
Stage IV
Grand Junction, CO
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- October 20, 2010 at 4:36 am
Hi Shari,
I had biochemo with Dr. Gonzalez in 2007 when I was Stage III (radical neck dissection w/40 nodes removed, 1 positive). My reasoning was that I was young and otherwise healthy and could withstand the side effects. It's a rough treatment. Unfortunately, I recurred two years after biochemo. Currently in the GSK MEK clinical trial at University and am doing well. Dr. Gonzalez is very good and University is a topnotch facility. Feel free to write to me if you want more info.
Good luck!
Lori
Stage IV
Grand Junction, CO
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- August 22, 2010 at 11:15 pm
Hi Emily,
I've been on the GSK MEK trial since March with good results, 3 tumors have completely disappeared. The side effects were terrible at first until the dosage was lowered from 2.5 mg to 2.0 mg. Now they are pretty minimal. The worst is the rash which I keep under control with cream and antibiotics. It has gotten better over time. I also watch what I eat to prevent stomach aches.
Where is the BKM120 trial? I am being treated at the University of Colorado Cancer Center.
Good luck to both of you and I hope you will post your husband's progress on the trial.
Lori
Stage IV
Grand Junction, CO
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- April 18, 2011 at 8:40 pm
Hi Jerry,
Just caught your post about IPI. You rock!! Just curious, are you taking another drug combined with IPI, and if so, what is that drug? I'm not sure what the IPI "brain" trial is. How long did it take for the IPI to work on brain mets to keep them stable or shrink them? You've been on the trial for a number of months, could you please share a few details about when the brain mets started, what treatments you've had prior to IPI, any SRS, WBR, etc.?
I've had two IPI infusions. I also have a very small inoperable tumor in the thalamus that I've had zapped with SRS. Not sure if it's tumor regrowth or radiation necrosis just yet. I'm wondering how fast IPI works if it's going to work in the brain. Your story is inspiring. Keep fighting!
Lori
Stage IV
Grand Junction, CO
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- April 18, 2011 at 8:40 pm
Hi Jerry,
Just caught your post about IPI. You rock!! Just curious, are you taking another drug combined with IPI, and if so, what is that drug? I'm not sure what the IPI "brain" trial is. How long did it take for the IPI to work on brain mets to keep them stable or shrink them? You've been on the trial for a number of months, could you please share a few details about when the brain mets started, what treatments you've had prior to IPI, any SRS, WBR, etc.?
I've had two IPI infusions. I also have a very small inoperable tumor in the thalamus that I've had zapped with SRS. Not sure if it's tumor regrowth or radiation necrosis just yet. I'm wondering how fast IPI works if it's going to work in the brain. Your story is inspiring. Keep fighting!
Lori
Stage IV
Grand Junction, CO
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- October 22, 2010 at 7:06 pm
I've been on GSK MEK for 8 months. The treatment is pretty easy. I fast 2 hours, take 2 pills, fast 2 more hours and I'm good for the day. The side effects are mild fatigue and a rash which is controlled with an antibiotic and prescription cream. You may also have diarrhea and nausea but that hasn't been a problem for me. The drug started working right away and some of my tumors have disappeared completely. You might also research the combo trials.
Good luck!
Lori
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- October 22, 2010 at 7:06 pm
I've been on GSK MEK for 8 months. The treatment is pretty easy. I fast 2 hours, take 2 pills, fast 2 more hours and I'm good for the day. The side effects are mild fatigue and a rash which is controlled with an antibiotic and prescription cream. You may also have diarrhea and nausea but that hasn't been a problem for me. The drug started working right away and some of my tumors have disappeared completely. You might also research the combo trials.
Good luck!
Lori
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