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- This topic has 54 replies, 13 voices, and was last updated 11 years, 4 months ago by
Snickers60.
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- January 16, 2013 at 8:32 pm
Hello Everyone,
I wanted to update everyone on whats been going on.
First of all the actual wbr was a breeze. I started losing my hair about the 7th treatment pretty bad. I chose to cut it all off and donate it to Love For Locks, I donated over 22 inches. I’ve always had long hair so being bald has been a trip but a very small price to pay. I have a sexy new redhead wig that was donated to me from a wonderful person named Jill at Artistic Salon in Auburn CA.
Current side effects from wbr are kind of hard to figure out since today is also my 9th day on Z. My head is itching like crazy, this could be because I shaved my head and still have stubbles, my ears, forehead, and head are burned like a sunburn so this could be causing the itching as well. Monday was my last day of dex and I had a horrible headache for a couple days, pretty much debilitating so I took half a dex yesterday and it helped, no dex today and headache is better. Food and drinks tastes really weird, my fiance doesn’t think I should cook because I over salt everything 🙂 I’ve had some nausea but got some Prochlorperazine 10mg and that helps. I’m taking a bunch of pills, in the am 4 z, 1prochlorperazine, 1morphine sulfate 20mg, 1 hydrocodone 10mg, supplements I’m taking are, turmeric, vit c, vit a, vit D3, cod liver oil, benfotiamine, and graviola extract (sour sop). Same at night minus the supplements. Any other supplements you can recommend?
Overall I feel pretty good no joint pain or rash as of yet.
The Zelboraf is kicking butt on my tumors!! I have the tumor on my arm that I’m using for a marker and its shrunk over 50% in a little over a week!! My breathing is easier and hardly any pain in my chest and back!! Its like a miracle!! I know my results could be short lived but I could also be a long term responder like Dick, Al, and many others. Just being a responder is a plus, this at the very least buys me time for the next miracle!!
I’ve finally been approved to go see Dr. Minor in San Fran, I go this Friday. I’m going to ask about the dosage of Z, clinical trials, any evidence of z working on the brain, and what he recommends on going forward. I’m super excited to get his opinion and visit the big city.
Brain MRI scheduled for February 15, results not until the 21st from the radiolgist but my dr said he’d try to get them to me sooner.
Does the z cause food to taste weird? Hard to determine whats causing what. 🙂
I’ve been hoping for an update from Linda Haley has anyone heard?
Lots of love to you all,
Denise
- Replies
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- January 16, 2013 at 10:39 pm
Denise,
Check out my post today about the audio of the ketogenic diet explained. It may or may not work for you but if it does stop tumor growth, you'll be doing cartwheels! Talk to your doc about it. It's easy enough to find the pubmed reports of the trials. If you need help getting them, let me know. Many cancers feast on sugar and carbs. Check out Dr. Fine's (MD) audio and you'll see why.
Best wishes for a long life.
Jake
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- January 16, 2013 at 10:39 pm
Denise,
Check out my post today about the audio of the ketogenic diet explained. It may or may not work for you but if it does stop tumor growth, you'll be doing cartwheels! Talk to your doc about it. It's easy enough to find the pubmed reports of the trials. If you need help getting them, let me know. Many cancers feast on sugar and carbs. Check out Dr. Fine's (MD) audio and you'll see why.
Best wishes for a long life.
Jake
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- January 16, 2013 at 10:39 pm
Denise,
Check out my post today about the audio of the ketogenic diet explained. It may or may not work for you but if it does stop tumor growth, you'll be doing cartwheels! Talk to your doc about it. It's easy enough to find the pubmed reports of the trials. If you need help getting them, let me know. Many cancers feast on sugar and carbs. Check out Dr. Fine's (MD) audio and you'll see why.
Best wishes for a long life.
Jake
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- January 16, 2013 at 10:41 pm
My onc. at NYU told me a few years ago not to take vit. C supplements. Anyone else hear that?
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- January 17, 2013 at 12:22 am
My doctor at NYU told me the same thing…no manufactured vitamin C; however, you can have plenty of natural vitamin c as found in oranges, etc. I wonder if it's true.
Tricia
Denise – Congratualtions on the shrinking tumors. Keep the momentum going!
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- January 17, 2013 at 12:22 am
My doctor at NYU told me the same thing…no manufactured vitamin C; however, you can have plenty of natural vitamin c as found in oranges, etc. I wonder if it's true.
Tricia
Denise – Congratualtions on the shrinking tumors. Keep the momentum going!
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- January 17, 2013 at 12:22 am
My doctor at NYU told me the same thing…no manufactured vitamin C; however, you can have plenty of natural vitamin c as found in oranges, etc. I wonder if it's true.
Tricia
Denise – Congratualtions on the shrinking tumors. Keep the momentum going!
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- January 16, 2013 at 10:58 pm
I have been following your posts since the day you showed up here. I must admit you have done quite well in advocating and educating yourself.
Keep up the good work. I really hope this does it for you.
A secret admirer 🙂
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- January 17, 2013 at 12:46 am
Great news Denise.Happy things are going well.Praying that you join Dick& me as complete responder to"Z".As for taste issue probably a side affect to "Z".I lost taste to many foods such as cofee,chocolates,bananas and other sweets.Thankfully it only lasted for about 3or 4 months.Keep that PMA (positive mind attitude) .It is a tool I use in the fight against melanoma.All the best with upcomming scans.Beat the Beast. Al
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- January 17, 2013 at 12:46 am
Great news Denise.Happy things are going well.Praying that you join Dick& me as complete responder to"Z".As for taste issue probably a side affect to "Z".I lost taste to many foods such as cofee,chocolates,bananas and other sweets.Thankfully it only lasted for about 3or 4 months.Keep that PMA (positive mind attitude) .It is a tool I use in the fight against melanoma.All the best with upcomming scans.Beat the Beast. Al
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- January 17, 2013 at 12:52 am
Al, my hero!! Well I spoke with my doctor today and I have thrush. Its a build up of yeast in throat caused by the radiation. Yuck!! He thinks this is why even water tastes disgusting. I’ve got a prescription for it so hopefully it’ll help. But if its from the z its good to know it won’t last.
Thanks Al
Denise ♥ -
- January 17, 2013 at 12:52 am
Al, my hero!! Well I spoke with my doctor today and I have thrush. Its a build up of yeast in throat caused by the radiation. Yuck!! He thinks this is why even water tastes disgusting. I’ve got a prescription for it so hopefully it’ll help. But if its from the z its good to know it won’t last.
Thanks Al
Denise ♥ -
- January 17, 2013 at 12:52 am
Al, my hero!! Well I spoke with my doctor today and I have thrush. Its a build up of yeast in throat caused by the radiation. Yuck!! He thinks this is why even water tastes disgusting. I’ve got a prescription for it so hopefully it’ll help. But if its from the z its good to know it won’t last.
Thanks Al
Denise ♥
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- January 17, 2013 at 12:46 am
Great news Denise.Happy things are going well.Praying that you join Dick& me as complete responder to"Z".As for taste issue probably a side affect to "Z".I lost taste to many foods such as cofee,chocolates,bananas and other sweets.Thankfully it only lasted for about 3or 4 months.Keep that PMA (positive mind attitude) .It is a tool I use in the fight against melanoma.All the best with upcomming scans.Beat the Beast. Al
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- January 17, 2013 at 2:31 am
Hi Denise,
Thanks for the update, I've been concerned about you, not to many posts lately!
I am super excited for you and all these feel good results, what a wonderful feeling! I don't have experience in many of the things you describe but I love your great attitude and I see your humor is getting you through much of this, good for you to see the brighter side of things. Prayers for continued healing and successful treatment.
Swanee
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- January 17, 2013 at 2:31 am
Hi Denise,
Thanks for the update, I've been concerned about you, not to many posts lately!
I am super excited for you and all these feel good results, what a wonderful feeling! I don't have experience in many of the things you describe but I love your great attitude and I see your humor is getting you through much of this, good for you to see the brighter side of things. Prayers for continued healing and successful treatment.
Swanee
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- January 17, 2013 at 2:31 am
Hi Denise,
Thanks for the update, I've been concerned about you, not to many posts lately!
I am super excited for you and all these feel good results, what a wonderful feeling! I don't have experience in many of the things you describe but I love your great attitude and I see your humor is getting you through much of this, good for you to see the brighter side of things. Prayers for continued healing and successful treatment.
Swanee
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- January 17, 2013 at 3:03 am
my husband did not do well at all with the WBR lost over 40 pounds was really tired and run down. We switched Dr and went to a Mel specialist. we are very happy with him and had WBR on 7 tumors then new Dr suggested gamma knife we had it and it was a breeze had to have it again 6 months later on 6 Mets this time. Lynn had lots of issues with taste. Eat with plastic eat he ate hot wings because he could taste the hot. Ice cream was also good to him. Good luck and God Bless
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- January 17, 2013 at 3:03 am
my husband did not do well at all with the WBR lost over 40 pounds was really tired and run down. We switched Dr and went to a Mel specialist. we are very happy with him and had WBR on 7 tumors then new Dr suggested gamma knife we had it and it was a breeze had to have it again 6 months later on 6 Mets this time. Lynn had lots of issues with taste. Eat with plastic eat he ate hot wings because he could taste the hot. Ice cream was also good to him. Good luck and God Bless
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- January 17, 2013 at 3:03 am
my husband did not do well at all with the WBR lost over 40 pounds was really tired and run down. We switched Dr and went to a Mel specialist. we are very happy with him and had WBR on 7 tumors then new Dr suggested gamma knife we had it and it was a breeze had to have it again 6 months later on 6 Mets this time. Lynn had lots of issues with taste. Eat with plastic eat he ate hot wings because he could taste the hot. Ice cream was also good to him. Good luck and God Bless
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- January 17, 2013 at 1:30 pm
Hi, Denise-
It's so good to hear from you and to hear that you are doing so well! My brother's doctors said that it takes 3 or 4 weeks for the melanoma cells to die from radiation, so you can expect continued improvement with time. And if the Zelboraf is working on a tumor you can see, you can be fairly confident that it is working on your brain tumors, too. Hooray!
I hope you continue to feel better and better, have few side effects, and kick that melanoma's butt! You're doing great.
LynnLuc forwarded a message from Linda Halely's son, Brandon, 2 days ago saying that Linda was comfortable and peaceful in hospice and surrounded by her family. Linda's ability to savor her life, enjoy her family, and support the rest of us for so many years after her diagnosis will always be an inspiration to me.
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- January 17, 2013 at 1:30 pm
Hi, Denise-
It's so good to hear from you and to hear that you are doing so well! My brother's doctors said that it takes 3 or 4 weeks for the melanoma cells to die from radiation, so you can expect continued improvement with time. And if the Zelboraf is working on a tumor you can see, you can be fairly confident that it is working on your brain tumors, too. Hooray!
I hope you continue to feel better and better, have few side effects, and kick that melanoma's butt! You're doing great.
LynnLuc forwarded a message from Linda Halely's son, Brandon, 2 days ago saying that Linda was comfortable and peaceful in hospice and surrounded by her family. Linda's ability to savor her life, enjoy her family, and support the rest of us for so many years after her diagnosis will always be an inspiration to me.
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- January 17, 2013 at 1:30 pm
Hi, Denise-
It's so good to hear from you and to hear that you are doing so well! My brother's doctors said that it takes 3 or 4 weeks for the melanoma cells to die from radiation, so you can expect continued improvement with time. And if the Zelboraf is working on a tumor you can see, you can be fairly confident that it is working on your brain tumors, too. Hooray!
I hope you continue to feel better and better, have few side effects, and kick that melanoma's butt! You're doing great.
LynnLuc forwarded a message from Linda Halely's son, Brandon, 2 days ago saying that Linda was comfortable and peaceful in hospice and surrounded by her family. Linda's ability to savor her life, enjoy her family, and support the rest of us for so many years after her diagnosis will always be an inspiration to me.
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- January 17, 2013 at 2:11 pm
So good to hear from you! I hope you continue us to feel well. Ask lots of questions and continue to fight! I scavenged data together and made pie charts about all my Zel dosing to date and took it to my appointment Tues. I have been on and off 9 months now and am now starting 2 wks on/1 wk off. Be your own advocate!Amy
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- January 17, 2013 at 2:11 pm
So good to hear from you! I hope you continue us to feel well. Ask lots of questions and continue to fight! I scavenged data together and made pie charts about all my Zel dosing to date and took it to my appointment Tues. I have been on and off 9 months now and am now starting 2 wks on/1 wk off. Be your own advocate!Amy
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- January 17, 2013 at 2:11 pm
So good to hear from you! I hope you continue us to feel well. Ask lots of questions and continue to fight! I scavenged data together and made pie charts about all my Zel dosing to date and took it to my appointment Tues. I have been on and off 9 months now and am now starting 2 wks on/1 wk off. Be your own advocate!Amy
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- January 17, 2013 at 7:40 pm
Denise,
Great to read about your progress, there is something to be said about having a visible tumor that you can just see getting smaller. Here’s to continued improvement, no joint pain, no rash, and a return of food tastes (my taste issues only lasted a few months).
Dick
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- January 17, 2013 at 10:38 pm
Way to go Denise !!! Way to go ! You sound so positive and upbeat. I love that.
Wayne is also a complete responder. ALL liver, lungs, sternum, and spine gone in 7 weeks. We are at MDA now waiting on Brain MRI and PET results TOMORROW……….shaky knees. 🙂
Glad to see you are on Benfotiamine. That stuff has been a miracle for Wayne (and I).
He said things tasted a little funny sometimes in the beginning on ZEL, but now he eats like a horse. His rash went completely away an he has no more joint pain. Feet a little and HIS HAIR is coming back great guns even while on ZEL. It's so CURLY, and his head smells just like a newborn babe. The rash was on top of his head also, but that too has gone away.
A new thing I'm adding to Wayen's regimen is KIWI. I learned one KIWI has the vit. c of 2 large oranges, more potassium than a banana and more anti-oxdiants than just about anything food you can name. ONE KIWI – go figure. They recommend 2 a day. Just cut half in two and eat with a spoon or put on salad. They even puried it with a little sugar and put it on ice cream and said it was awesome. Going to try all the above when we get back home. In Houston now.
Wayne also take a B-50 Complex – a combo of all of the B's. He's taking a IRON SUPPLEMENT also….jell cap….and it has helped his ENERGY BIG TIME.
That's all I can think of off the top of my hat other than what you named. He does Fish Oil, Vit. D., B-50, Benfotiamine, Turmeric……ugh….I don't have his list with me, but the B's, the Iron, and the Benfo have proven to be lifechanging for him. He has more energy than ever before. Was diagnosed last March and by June 13 it was all gone on ZEL and he has remained NED since then. OH, and he also does soda water to watch his ALKALINE STRIPS and keep himself ALKALINE….very, very important we believe. Cancer loves an Acidic body…….
YOU GO GIRL…………love you spirit.
Nancy (devoted wife of 3 X Warrior Wayne)
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- January 17, 2013 at 10:38 pm
Way to go Denise !!! Way to go ! You sound so positive and upbeat. I love that.
Wayne is also a complete responder. ALL liver, lungs, sternum, and spine gone in 7 weeks. We are at MDA now waiting on Brain MRI and PET results TOMORROW……….shaky knees. 🙂
Glad to see you are on Benfotiamine. That stuff has been a miracle for Wayne (and I).
He said things tasted a little funny sometimes in the beginning on ZEL, but now he eats like a horse. His rash went completely away an he has no more joint pain. Feet a little and HIS HAIR is coming back great guns even while on ZEL. It's so CURLY, and his head smells just like a newborn babe. The rash was on top of his head also, but that too has gone away.
A new thing I'm adding to Wayen's regimen is KIWI. I learned one KIWI has the vit. c of 2 large oranges, more potassium than a banana and more anti-oxdiants than just about anything food you can name. ONE KIWI – go figure. They recommend 2 a day. Just cut half in two and eat with a spoon or put on salad. They even puried it with a little sugar and put it on ice cream and said it was awesome. Going to try all the above when we get back home. In Houston now.
Wayne also take a B-50 Complex – a combo of all of the B's. He's taking a IRON SUPPLEMENT also….jell cap….and it has helped his ENERGY BIG TIME.
That's all I can think of off the top of my hat other than what you named. He does Fish Oil, Vit. D., B-50, Benfotiamine, Turmeric……ugh….I don't have his list with me, but the B's, the Iron, and the Benfo have proven to be lifechanging for him. He has more energy than ever before. Was diagnosed last March and by June 13 it was all gone on ZEL and he has remained NED since then. OH, and he also does soda water to watch his ALKALINE STRIPS and keep himself ALKALINE….very, very important we believe. Cancer loves an Acidic body…….
YOU GO GIRL…………love you spirit.
Nancy (devoted wife of 3 X Warrior Wayne)
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- January 17, 2013 at 10:38 pm
Way to go Denise !!! Way to go ! You sound so positive and upbeat. I love that.
Wayne is also a complete responder. ALL liver, lungs, sternum, and spine gone in 7 weeks. We are at MDA now waiting on Brain MRI and PET results TOMORROW……….shaky knees. 🙂
Glad to see you are on Benfotiamine. That stuff has been a miracle for Wayne (and I).
He said things tasted a little funny sometimes in the beginning on ZEL, but now he eats like a horse. His rash went completely away an he has no more joint pain. Feet a little and HIS HAIR is coming back great guns even while on ZEL. It's so CURLY, and his head smells just like a newborn babe. The rash was on top of his head also, but that too has gone away.
A new thing I'm adding to Wayen's regimen is KIWI. I learned one KIWI has the vit. c of 2 large oranges, more potassium than a banana and more anti-oxdiants than just about anything food you can name. ONE KIWI – go figure. They recommend 2 a day. Just cut half in two and eat with a spoon or put on salad. They even puried it with a little sugar and put it on ice cream and said it was awesome. Going to try all the above when we get back home. In Houston now.
Wayne also take a B-50 Complex – a combo of all of the B's. He's taking a IRON SUPPLEMENT also….jell cap….and it has helped his ENERGY BIG TIME.
That's all I can think of off the top of my hat other than what you named. He does Fish Oil, Vit. D., B-50, Benfotiamine, Turmeric……ugh….I don't have his list with me, but the B's, the Iron, and the Benfo have proven to be lifechanging for him. He has more energy than ever before. Was diagnosed last March and by June 13 it was all gone on ZEL and he has remained NED since then. OH, and he also does soda water to watch his ALKALINE STRIPS and keep himself ALKALINE….very, very important we believe. Cancer loves an Acidic body…….
YOU GO GIRL…………love you spirit.
Nancy (devoted wife of 3 X Warrior Wayne)
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- January 17, 2013 at 7:40 pm
Denise,
Great to read about your progress, there is something to be said about having a visible tumor that you can just see getting smaller. Here’s to continued improvement, no joint pain, no rash, and a return of food tastes (my taste issues only lasted a few months).
Dick
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- January 17, 2013 at 7:40 pm
Denise,
Great to read about your progress, there is something to be said about having a visible tumor that you can just see getting smaller. Here’s to continued improvement, no joint pain, no rash, and a return of food tastes (my taste issues only lasted a few months).
Dick
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