Linda J

I was in the same situation. I was supposed to start the combo braf/mek but then brain tumors happened. I did 5 rounds
of wbr to keep any other crazy brain things popping up and then 1 round of carbo/taxel to try to keep the rest of the mets from going crazy. The wbr and chemo were given because the docs were waiting for the brain braf trial to come to Canada.
Now I’m on the brain braf trial – a GSK study. I’m thankful because now I’m on something that will take care of everything all at once.
If the trial had been in Canada earlier I would have started it right away. A met in my arm bone caused a fracture while I was waiting but I’m going to be doing some palliative radiation this week that does not interfere with the trial at all.
I would hop on the braf study.
Linda J

I was in the same situation. I was supposed to start the combo braf/mek but then brain tumors happened. I did 5 rounds
of wbr to keep any other crazy brain things popping up and then 1 round of carbo/taxel to try to keep the rest of the mets from going crazy. The wbr and chemo were given because the docs were waiting for the brain braf trial to come to Canada.
Now I’m on the brain braf trial – a GSK study. I’m thankful because now I’m on something that will take care of everything all at once.
If the trial had been in Canada earlier I would have started it right away. A met in my arm bone caused a fracture while I was waiting but I’m going to be doing some palliative radiation this week that does not interfere with the trial at all.
I would hop on the braf study.
Linda J

Hi
I just finished 5 rounds of wbr a couple of weeks ago. My biggest issue was fatigue. The other issue I’m having is weening off the steroids. The steroids helped a lot during radiation but now I’m having nausea as I’m trying to get off of the – I’m also on carbo/taxel right now so that isn’t helping.
Generally, the fatigue is the worst. I’m 31 so I’m hoping I don’t lose my marbles yet 🙂 I haven’t noticed any weird brain things but my husband might argue that!
Best of luck to you – it is a little unnerving having the face mask bolted down to the table but the entire zapping takes less than 10 mins so hopefully you don’t find it too claustrophobic.
Linda J

Hi
I just finished 5 rounds of wbr a couple of weeks ago. My biggest issue was fatigue. The other issue I’m having is weening off the steroids. The steroids helped a lot during radiation but now I’m having nausea as I’m trying to get off of the – I’m also on carbo/taxel right now so that isn’t helping.
Generally, the fatigue is the worst. I’m 31 so I’m hoping I don’t lose my marbles yet 🙂 I haven’t noticed any weird brain things but my husband might argue that!
Best of luck to you – it is a little unnerving having the face mask bolted down to the table but the entire zapping takes less than 10 mins so hopefully you don’t find it too claustrophobic.
Linda J

Good luck – I hope you get great news!!
Linda J

Good luck – I hope you get great news!!
Linda J

Hurray – that’s awesome! I start the Braf/Mek combo trial on the 19th. I’ve got a busy week of scans, blood work, heart tests, eye exams etc.
It makes me feel good knowing that these two drugs on their own have helped people. I don’t feel as much as a guinea pig that way!
My nurse has said that of the different types of cancer patients who are on this trial, the melanoma patients seem to be having the best results – hurray!!!!
All the best!
Linda J

Hurray – that’s awesome! I start the Braf/Mek combo trial on the 19th. I’ve got a busy week of scans, blood work, heart tests, eye exams etc.
It makes me feel good knowing that these two drugs on their own have helped people. I don’t feel as much as a guinea pig that way!
My nurse has said that of the different types of cancer patients who are on this trial, the melanoma patients seem to be having the best results – hurray!!!!
All the best!
Linda J

Hi Wendy,

I think the trial number is
Cbkm120b2101

It is called:
A phase 1b open label mult-center dose escalation study of oral BKM120 in combination with oral GSK1120212 (etc)

The doctor in charge of my study is Dr Philippe Bedard
1-416-946-4501 ex4534

Best of luck,
Linda J

Hi carmon,

That is great news that your met has shrunk 50%. I’m into my second week after just 1 infusion of carbo/ taxel and I’m feeling discouraged. I feel pain and I feel like the drugs aren’t doing anything to shrink or stop the tumors. I guess it is still early. My second dose is next Thursday so I’m going to get my fighting spirit back and hope for good results like yours.

In terms of raw diets, I have a friend who is really big into that diet. He has invited me out to a RAW group meeting. I just feel like it is too much to upheave my eating life style right now. My naturpathic doc said that the idea of an alkaline diet can really be achieved by increasing fruit and veggie intake. I also think that the dietitians I talk to at the hospital are in the know about the best ways to eat for health and none of them have suggested going raw.
I think for some people that diet style may work and make them feel better, but I don’t think it is a magic cure, and for me right now, I just need to get food into me that is easy to prep and that gives me strength. My 2 cents. It’s an interesting conversation Ive been having at home lately as my friend who is very caring, is also convinced that the raw diet would be good for me.

Linda J

Hi carmon,

That is great news that your met has shrunk 50%. I’m into my second week after just 1 infusion of carbo/ taxel and I’m feeling discouraged. I feel pain and I feel like the drugs aren’t doing anything to shrink or stop the tumors. I guess it is still early. My second dose is next Thursday so I’m going to get my fighting spirit back and hope for good results like yours.

In terms of raw diets, I have a friend who is really big into that diet. He has invited me out to a RAW group meeting. I just feel like it is too much to upheave my eating life style right now. My naturpathic doc said that the idea of an alkaline diet can really be achieved by increasing fruit and veggie intake. I also think that the dietitians I talk to at the hospital are in the know about the best ways to eat for health and none of them have suggested going raw.
I think for some people that diet style may work and make them feel better, but I don’t think it is a magic cure, and for me right now, I just need to get food into me that is easy to prep and that gives me strength. My 2 cents. It’s an interesting conversation Ive been having at home lately as my friend who is very caring, is also convinced that the raw diet would be good for me.

Linda J

Jen,
What a nightmare. I know how it feels to feel hopeless especially when not feeling 100%. Hopefully the ipi trial will work.
Someone on this board once told me that hope lives in the darkest places.
I wish you and your husband all the best, you will be in my prayers.
Linda J

Jen,
What a nightmare. I know how it feels to feel hopeless especially when not feeling 100%. Hopefully the ipi trial will work.
Someone on this board once told me that hope lives in the darkest places.
I wish you and your husband all the best, you will be in my prayers.
Linda J

Hi,
She said the most common thing she is seeing is a rash that seems to present on the face, she said it was similar to acne (great!). She said it seems to come and go in waves.
Another person on the board, emilypen, her husband had been on this trial for several months so she would have more Info about side effects.
Linda J

Hi,
She said the most common thing she is seeing is a rash that seems to present on the face, she said it was similar to acne (great!). She said it seems to come and go in waves.
Another person on the board, emilypen, her husband had been on this trial for several months so she would have more Info about side effects.
Linda J