Dissapointing News Today
Comments
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Mamacitagrannylove said:Anita
Breaks my heart to hear the results of your biopsy and I can only imagine what you are feeling. I am so very sorry you are going thru this. I don't know anything about the Tarceva except what others have posted but it appears to have very good results. I know your emotions are all over the place, and rightfully so. But I also know you are a strong individual who will never give in to this dreaded disease. You are a fighter Mamacita and I have faith that you can overcome this. You might be feeling down right now but with your optimistic and positive attitude, you won't be down for long. I am hoping that someone will post with some info on Tarceva for you, so you can have some idea of what to expect. I also go to the website LungLoveLink.org it seems to have alot of resources as well. Know you are in my prayers Mamacita. Stay strong! Agape
Cheryl
So sorry that you have to go through this. I think if you check Staying Calms my space she left us alot of information on it about Tarceva and websites to check. Even after her passing she is still with us and helping. Everyone is pulling for you, and just because it is mets doesn't mean you don't have a lot of time left with your family. Stay strong. Sending positive thoughts and prayers your way.
c0 -
Anitacatcon49 said:Mamacita
So sorry that you have to go through this. I think if you check Staying Calms my space she left us alot of information on it about Tarceva and websites to check. Even after her passing she is still with us and helping. Everyone is pulling for you, and just because it is mets doesn't mean you don't have a lot of time left with your family. Stay strong. Sending positive thoughts and prayers your way.
c
I am so very sorry that you got that very unwelcome news. I sense that you are a real fighter and I know you can kick this to the curb. I echo the sentiment that you will find lots of people who know about Tarceva and are doing well at Inspire. I hope you will have a look.0 -
zometa or xgevamamacita5 said:I received my biopsy results
I received my biopsy results today...not good. I do have mets to my spine and since I am positive for the EGFR mutation I will be starting on 150mg of Tarceva. I am not sure what this means for me. I am not one to ask my doctor on my prognosis, but I do wonder how long I will have with my family. As my name denotes, I have 5 beautiful children I want to spend more time with, and a husband that I want to grow old with. I am feeling very sorry for myself right now. I wish Deb was here so I could "talk" over the whole Tarceva thing with. If anyone else out there can give some pointers in that area I would be grateful.
I don't know much about Tarceva, but do understand it works well for those with EFGR. When my wife, was dx she had mets to the spine, ribs and femur. She was put on Zometa for bone strength. Her first line chemo did a very good job and at the time the cancer in her bones abated. Her onc has since switched her to xgeva as it is a shot, not an iv fluid. It also has better stats, and did not give her the fu like symptoms she experienced on zometa... but it is a lot more expensive and can take some hoops to get insurance to pay.0 -
Thank you FriendsNayPaul said:zometa or xgeva
I don't know much about Tarceva, but do understand it works well for those with EFGR. When my wife, was dx she had mets to the spine, ribs and femur. She was put on Zometa for bone strength. Her first line chemo did a very good job and at the time the cancer in her bones abated. Her onc has since switched her to xgeva as it is a shot, not an iv fluid. It also has better stats, and did not give her the fu like symptoms she experienced on zometa... but it is a lot more expensive and can take some hoops to get insurance to pay.
Thank you all for your kind words of encouragement. I am a fighter and I WILL get through this. My oncologist called with the news at 12:30 and I had my Tarceva in had at 4:00. It cost me $5.00 for a 30 day supply through my Kaiser Health Care plan. When I looked at the receipt I can see the out of plan cost for a 30 day supply is......$5088.75! OUTRAGEOUS!! I am blessed to have health coverage but what about someone who doesn't?? This is a drug that you take for as long as it keeps working for you. We're talking $60,000 a year. My sister's neighbor has been on it for 5 years! I am feeling darn lucky to have the EGFR mutation and doubly blessed to have a plan that covers Tarceva. Thanks again for the wonderful support.
Anita0 -
EGFR & Alk-1mamacita5 said:Thank you Friends
Thank you all for your kind words of encouragement. I am a fighter and I WILL get through this. My oncologist called with the news at 12:30 and I had my Tarceva in had at 4:00. It cost me $5.00 for a 30 day supply through my Kaiser Health Care plan. When I looked at the receipt I can see the out of plan cost for a 30 day supply is......$5088.75! OUTRAGEOUS!! I am blessed to have health coverage but what about someone who doesn't?? This is a drug that you take for as long as it keeps working for you. We're talking $60,000 a year. My sister's neighbor has been on it for 5 years! I am feeling darn lucky to have the EGFR mutation and doubly blessed to have a plan that covers Tarceva. Thanks again for the wonderful support.
Anita
Hi Mamacita5,
I am cheap, so your post atou $5 for $5000 makes me happy!!!
Anyway, can you help me? My Mom is EGFR positive and Alk-1 Neg - can you tell me what this means?????
Love & Hope,
Gretchen0 -
Tarcevamamacita5 said:I received my biopsy results
I received my biopsy results today...not good. I do have mets to my spine and since I am positive for the EGFR mutation I will be starting on 150mg of Tarceva. I am not sure what this means for me. I am not one to ask my doctor on my prognosis, but I do wonder how long I will have with my family. As my name denotes, I have 5 beautiful children I want to spend more time with, and a husband that I want to grow old with. I am feeling very sorry for myself right now. I wish Deb was here so I could "talk" over the whole Tarceva thing with. If anyone else out there can give some pointers in that area I would be grateful.
Hello Mamacita~ I wish you recieved better news as well, but you didn't. So now your going to put on your big girl panties and kick its... like you always have and you will again!
Just keep that positive train going!
Wish I could help you with the Tarceva, Moms on Gemzar and its in her spine as well, however I do remember seeing one of Debs write ups on side effects if you happen to have them on lowering the doses etc... let me know if you need a hand finding one of Debs amazing words of info. I will be glad to help you!
Stay strong and stay positive!!0 -
Gretchenlaynie11 said:EGFR & Alk-1
Hi Mamacita5,
I am cheap, so your post atou $5 for $5000 makes me happy!!!
Anyway, can you help me? My Mom is EGFR positive and Alk-1 Neg - can you tell me what this means?????
Love & Hope,
Gretchen
You can start by using Google to find anything and everything about Tarceva. Check out the web group INSPIRE and enter Tarceva in the search on that site and you can get information from people who have been on the drug. Since I am a newbie on the drug I cannot say how I will react to it. Most important is that you ask your mom's oncologist about it. I am very hopeful for your mom and myself!0 -
Praying heremamacita5 said:Thank you Friends
Thank you all for your kind words of encouragement. I am a fighter and I WILL get through this. My oncologist called with the news at 12:30 and I had my Tarceva in had at 4:00. It cost me $5.00 for a 30 day supply through my Kaiser Health Care plan. When I looked at the receipt I can see the out of plan cost for a 30 day supply is......$5088.75! OUTRAGEOUS!! I am blessed to have health coverage but what about someone who doesn't?? This is a drug that you take for as long as it keeps working for you. We're talking $60,000 a year. My sister's neighbor has been on it for 5 years! I am feeling darn lucky to have the EGFR mutation and doubly blessed to have a plan that covers Tarceva. Thanks again for the wonderful support.
Anita
Mamacita,
I wish and pray only the best for you in this fight, when I was first dx I cried for six months, not because I was afraid of dying personally I just didn't want to leave my only child while he is a teenager. I'm not sure what I'll do when/if I have to face the monster again.
You are right you have so much more living to do especially if you have 5 children! What a blessing!
Good luck I will keep you in my prayers.
Teresa0 -
different mutationslaynie11 said:EGFR & Alk-1
Hi Mamacita5,
I am cheap, so your post atou $5 for $5000 makes me happy!!!
Anyway, can you help me? My Mom is EGFR positive and Alk-1 Neg - can you tell me what this means?????
Love & Hope,
Gretchen
Efgr is a type of genetic muation and so is alk. Genetic mutaions are to m knowledge mutually exclusive. So if you have one, you will not have another.
The three most prominent mutations are kras, efgr and alk. Efgr and alk have targeted therapy drugs which are quite effective.
So, in your mother's case, the onc my prescribe some of the more effective efgr inhibitors. There are mulltiple approved efgr inhibitors, and one approved alk inhibitor.0 -
Anita...mamacita5 said:Thank you Friends
Thank you all for your kind words of encouragement. I am a fighter and I WILL get through this. My oncologist called with the news at 12:30 and I had my Tarceva in had at 4:00. It cost me $5.00 for a 30 day supply through my Kaiser Health Care plan. When I looked at the receipt I can see the out of plan cost for a 30 day supply is......$5088.75! OUTRAGEOUS!! I am blessed to have health coverage but what about someone who doesn't?? This is a drug that you take for as long as it keeps working for you. We're talking $60,000 a year. My sister's neighbor has been on it for 5 years! I am feeling darn lucky to have the EGFR mutation and doubly blessed to have a plan that covers Tarceva. Thanks again for the wonderful support.
Anita
I read each of the posts in this forum since the first day you posted it but couldn't respond until today. Guess I'm still having a little pity party for myself, nothing is going right lately. Add to that the passing of Deb and now your diagnosis, it just breaks my heart.
My chemo was just postponed for another month, again, and I'm getting so tired of waiting and taking new antibiotics everyday. Just want to get the d@mned treatment started.
You will do well, your a tough lady and you have a lot to live for so I know you will fight with everything you've got!!
I will keep you in my prayers.
Stay strong,
Glenna0 -
How are you tolerating the Tarceva, Mamacita?sleepless in jersey said:Tarceva
Hello Mamacita~ I wish you recieved better news as well, but you didn't. So now your going to put on your big girl panties and kick its... like you always have and you will again!
Just keep that positive train going!
Wish I could help you with the Tarceva, Moms on Gemzar and its in her spine as well, however I do remember seeing one of Debs write ups on side effects if you happen to have them on lowering the doses etc... let me know if you need a hand finding one of Debs amazing words of info. I will be glad to help you!
Stay strong and stay positive!!
Hi Mamacita, I've been thinking about you. I am hoping and praying you are feeling well.
Enjoy those grandbabies, stay strong and keep fighting!!0 -
Thank you NayPaul....laynie11 said:How are you tolerating the Tarceva, Mamacita?
Hi Mamacita, I've been thinking about you. I am hoping and praying you are feeling well.
Enjoy those grandbabies, stay strong and keep fighting!!
for your replay re: EGFR & Alk-1 mutations. I hope you are feeling well. I am sending prayers and positive energy your way.
Take care,
Gretchen0 -
laynie11laynie11 said:How are you tolerating the Tarceva, Mamacita?
Hi Mamacita, I've been thinking about you. I am hoping and praying you are feeling well.
Enjoy those grandbabies, stay strong and keep fighting!!
I have only taken two doses of the medication. No rash so far but I am moisturizing like crazy to get ahead of the game. I had some diarrhea yesterday afternoon. Every Friday a bunch of us a work get together to watch Survivor at lunch and have a meal together. The gal that cooked yesterday made an awesome Mexican spread and I could not resist. Lesson learned...I think spicy might be out for awhile. I am both dreading the rash, and praying for the rash. I have heard conflicting comments about the rash being an indicator that the medication could be working. Even my oncologist indicated that we want to see a rash. I asked for oral antibiotics to help stave of the infection that can occur but he said "No" at this point. Type the following into Google: "Tarceva® Flaming Face Skin Care Regime" there is some good information on some products you might want to get. "talk" to you soon. Anita0 -
GlennaGlenna M said:Anita...
I read each of the posts in this forum since the first day you posted it but couldn't respond until today. Guess I'm still having a little pity party for myself, nothing is going right lately. Add to that the passing of Deb and now your diagnosis, it just breaks my heart.
My chemo was just postponed for another month, again, and I'm getting so tired of waiting and taking new antibiotics everyday. Just want to get the d@mned treatment started.
You will do well, your a tough lady and you have a lot to live for so I know you will fight with everything you've got!!
I will keep you in my prayers.
Stay strong,
Glenna
We are birds of a feather. I think I moped for 2 weeks after I heard you were having problems again. I guess I equate the success of others with my own success and vise-versa. Then our beloved Deb... Then I get my stinkin' news. I am very sorry that your chemo is post poned AGAIN. Let's make a pact...WE ARE TWO STRONG WOMEN who want to LIVE!!! WE WILL FIGHT with everything we have! *\O/* *\O/* (that's us cheering each other on)0 -
Anitamamacita5 said:Glenna
We are birds of a feather. I think I moped for 2 weeks after I heard you were having problems again. I guess I equate the success of others with my own success and vise-versa. Then our beloved Deb... Then I get my stinkin' news. I am very sorry that your chemo is post poned AGAIN. Let's make a pact...WE ARE TWO STRONG WOMEN who want to LIVE!!! WE WILL FIGHT with everything we have! *\O/* *\O/* (that's us cheering each other on)
It has been a horrible month hasn't it...especially losing Deb, I still miss her so much on Facebook
I think you hit the nail on the head, equating our success to the success of others. It's such a heartbreaking disease!!
I'm with you sister, WE ARE TWO STONG WOMEN WHO WILL FIGHT AND WIN!!! Cancer can't keep women like us down, we will kick its butt!! *\O/* *\O/* I especially like your cheerleaders.
Can't thank you enough, you have no idea how much you lifted my spirits with this response, I'm actually smiling for the first time today.
Take care my dear friend.0 -
Anitamamacita5 said:Glenna
We are birds of a feather. I think I moped for 2 weeks after I heard you were having problems again. I guess I equate the success of others with my own success and vise-versa. Then our beloved Deb... Then I get my stinkin' news. I am very sorry that your chemo is post poned AGAIN. Let's make a pact...WE ARE TWO STRONG WOMEN who want to LIVE!!! WE WILL FIGHT with everything we have! *\O/* *\O/* (that's us cheering each other on)
As Glenna said, we equate our successes or failures with those of others. This can be a plus or a negative of reading these forums.
You and Glenna are very strong an I believe you can beat this beast. I will (do) pray for you both and many on here have got your backs.
Come to us on the days when you don't feel strong and when you do. We are here for you.
Love, Diane0 -
Glenna & AnitaGlenna M said:Anita
It has been a horrible month hasn't it...especially losing Deb, I still miss her so much on Facebook I think you hit the nail on the head, equating our success to the success of others. It's such a heartbreaking disease!!
I'm with you sister, WE ARE TWO STONG WOMEN WHO WILL FIGHT AND WIN!!! Cancer can't keep women like us down, we will kick its butt!! *\O/* *\O/* I especially like your cheerleaders.
Can't thank you enough, you have no idea how much you lifted my spirits with this response, I'm actually smiling for the first time today.
Take care my dear friend.
I am one of your cheerleaders!!! I cannot do the splits, nor can I tumble, but I can pray and cheer from the sidelines!!
Give a "G" - give me an "A"!!!
Stay strong girlies and I am glad you have each other.
Gretchen0 -
Gretchenlaynie11 said:Glenna & Anita
I am one of your cheerleaders!!! I cannot do the splits, nor can I tumble, but I can pray and cheer from the sidelines!!
Give a "G" - give me an "A"!!!
Stay strong girlies and I am glad you have each other.
Gretchen
*\O/**\O/**\O/*0 -
Dianelekkerone said:Anita
As Glenna said, we equate our successes or failures with those of others. This can be a plus or a negative of reading these forums.
You and Glenna are very strong an I believe you can beat this beast. I will (do) pray for you both and many on here have got your backs.
Come to us on the days when you don't feel strong and when you do. We are here for you.
Love, Diane
You are a sweetheart!0 -
Gretchenlaynie11 said:Glenna & Anita
I am one of your cheerleaders!!! I cannot do the splits, nor can I tumble, but I can pray and cheer from the sidelines!!
Give a "G" - give me an "A"!!!
Stay strong girlies and I am glad you have each other.
Gretchen
Thank you, appreciate your cheers and prayers.
I'm glad we all have each other for support. It does so much for me when I am down or having a pity party, I come back and read some of your responses and it cheers me up and helps me to continue my fight.
God bless you all.
Glenna0
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