New here with Her2+
Andrea
Comments
-
Hope You Have An Answer Soon
I hope some ladies here on this board who are HER2 will be able to answers your questions. I am not HER2 so I can't.
Another place you might inquire is the HER2 support forum : http://her2support.org/
I do believe that this recurrence is still a local one. Any recurrence happening near, in, behind the breast is still local and the same stage you were diagnose. That is good news with all your present difficulties your dealing with at this time.
I do hope you have an answer soon.
Best,
Doris0 -
Andrea.........
Welcome.
I am also HER2+. I had chemo and then Herceptin every 3 weeks for a year. I had lost all of my hair while on chemo, and my hair grew back while just on Herceptin. I had no side effects from it whatsoever.
Please talk to your doctor about your side effects. Hopefully, he/she can give you some answers.
CR0 -
Hi AndreaCR1954 said:Andrea.........
Welcome.
I am also HER2+. I had chemo and then Herceptin every 3 weeks for a year. I had lost all of my hair while on chemo, and my hair grew back while just on Herceptin. I had no side effects from it whatsoever.
Please talk to your doctor about your side effects. Hopefully, he/she can give you some answers.
CR
I am also HER2+. I did herceptin every 3 weeks for a year. Lost my hair from chemo, but no side effects from herceptin at all. I agree with CR, call your doctor maybe there will be some kind of an answer for you.0 -
Hi AndreaKat11 said:Hi Andrea
I am also HER2+. I did herceptin every 3 weeks for a year. Lost my hair from chemo, but no side effects from herceptin at all. I agree with CR, call your doctor maybe there will be some kind of an answer for you.
I am also HER2. After chemo while on Herceptin my hair also grew back. Side effects were not bad just achy. I agree call your Doctor. Good luck0 -
Andrea... sorry to hear the
Andrea... sorry to hear the cancer came back, but your persistence in having the lump biopsied saved your life. I am glad you have started with treatment. I was triple positive( Her 2, Er, Pr +) and received six rounds of chemo( carboplatin, taxotere, and herceptin), herceptin for a year, and six weeks of rads. Her2 is a very aggressive cancer. I wasn't going to take any chances, I went full force with the plan of attack my oncologist lined up for me.
Take care, God bless.
PS I had minimal side effects while on herceptin. Hair did fall out with chemo, it grew back thicker than ever!0 -
Herzeption
I had chemo first (lost all my hair) than I had radiation and now I am on Herzeption for a year. My hair is growing back slowly again. Since I am doing Herzeption my bones are bad acking when I get up in the morning. During the day it is not so bad but when I lay down to rest (still weak) and get up again it hurts in my legs and back. I asked the Dr. if that is (normal)? and he replied that everybody is different. I just turned 66 and maybe age has some to do with it. I did real good when I was on chemo and radiation. Never got sick, only tired and hairloss.
I hoped it helped you and please stay in touch, maybe we can help each other more as we travel the same "road".
Ilona0 -
Thank you
I want to thank you all for making me feel welcome to the group. I did speak with my doctor yesterday and he said he had never heard of anyone loosing their hair on herceptin. I know my hair is falling out and it wasnt doing it until I started that drug. I was also put on the drug Anstrozole. They said I would feel bone aches with this but that it could also make my hair fall out but not as likely as the other pill drug they recommend for HER2+. The doctor I actually saw yesterday as a stand in as my doctor is on maternity leave and wont return until Feb. The stand in doctor tried to explain to me again that radiation is a common part of treatment and wanted to reeducate me on it. I explained to him that my mind was made up on not having radiation. That they better figure out how to keep me from reaccurance again with drug therapy. Thats how my day went. I have to go today and see the plastic surgeon again. We put 300cc of saline in my expander the other day (a bit painful) and I have to go see if we are going to add more (dont think I will let him).
I sure hope yall all have a wonderful day... time for me to get dressed and head out...
huggz to all0 -
Personally....AndreaLN said:Thank you
I want to thank you all for making me feel welcome to the group. I did speak with my doctor yesterday and he said he had never heard of anyone loosing their hair on herceptin. I know my hair is falling out and it wasnt doing it until I started that drug. I was also put on the drug Anstrozole. They said I would feel bone aches with this but that it could also make my hair fall out but not as likely as the other pill drug they recommend for HER2+. The doctor I actually saw yesterday as a stand in as my doctor is on maternity leave and wont return until Feb. The stand in doctor tried to explain to me again that radiation is a common part of treatment and wanted to reeducate me on it. I explained to him that my mind was made up on not having radiation. That they better figure out how to keep me from reaccurance again with drug therapy. Thats how my day went. I have to go today and see the plastic surgeon again. We put 300cc of saline in my expander the other day (a bit painful) and I have to go see if we are going to add more (dont think I will let him).
I sure hope yall all have a wonderful day... time for me to get dressed and head out...
huggz to all
I would rethink about refusing radiation.....there are NO guarantees that they can keep you from having a recurrence with drugs or ALL conventional treatments combined....cancer is sneaky....I had one rogue cell that escaped chemo and radiation...now dealing with stage IV... and there is no cure for cancer...best we can hope for is remission...sadly at this time...It's all a very personal decision and we have to do what we feel is best for ourselves...personally I want and wanted all they could throw at this nasty disease...
Are you afraid of radiation? Why so adamant against it? Just curious...I've had it twice....
Wishing you the best...keep us posted, we care0 -
Arimidex (Anastrozole) Is The Culprit!AndreaLN said:Thank you
I want to thank you all for making me feel welcome to the group. I did speak with my doctor yesterday and he said he had never heard of anyone loosing their hair on herceptin. I know my hair is falling out and it wasnt doing it until I started that drug. I was also put on the drug Anstrozole. They said I would feel bone aches with this but that it could also make my hair fall out but not as likely as the other pill drug they recommend for HER2+. The doctor I actually saw yesterday as a stand in as my doctor is on maternity leave and wont return until Feb. The stand in doctor tried to explain to me again that radiation is a common part of treatment and wanted to reeducate me on it. I explained to him that my mind was made up on not having radiation. That they better figure out how to keep me from reaccurance again with drug therapy. Thats how my day went. I have to go today and see the plastic surgeon again. We put 300cc of saline in my expander the other day (a bit painful) and I have to go see if we are going to add more (dont think I will let him).
I sure hope yall all have a wonderful day... time for me to get dressed and head out...
huggz to all
I don't believe it is Herceptin that is the root of your hair loss. It is a rare side effect of Arimidex (Anastrozole) and will grow back once off the drug. Perhaps you can have your oncologist give you Tamoxifen instead. An older hormonal therapy drug but, a good one all the same.
Good luck to you,
Doris0 -
Doris,SIROD said:Hope You Have An Answer Soon
I hope some ladies here on this board who are HER2 will be able to answers your questions. I am not HER2 so I can't.
Another place you might inquire is the HER2 support forum : http://her2support.org/
I do believe that this recurrence is still a local one. Any recurrence happening near, in, behind the breast is still local and the same stage you were diagnose. That is good news with all your present difficulties your dealing with at this time.
I do hope you have an answer soon.
Best,
Doris
I agree with you on one thing it is still local and at the same stage it was before but as recurrence I can not agree. The surgeon messed up and left a piece of tissue behind. I am going back through this because of their mess up.
Andrea0 -
HairKat11 said:Hi Andrea
I am also HER2+. I did herceptin every 3 weeks for a year. Lost my hair from chemo, but no side effects from herceptin at all. I agree with CR, call your doctor maybe there will be some kind of an answer for you.
Hello,
I did speak to my doctor and was told they had never heard of anyone loosing their hair on this drug. I explained to him that I had done alot of research on this and that it is possible from all I have gathered and that maybe he should do the same.
I guess I am just crazy here and I am pulling my hair out laughs...
Thanks for your input
Andrea0 -
Check with oncologistAndreaLN said:Doris,
I agree with you on one thing it is still local and at the same stage it was before but as recurrence I can not agree. The surgeon messed up and left a piece of tissue behind. I am going back through this because of their mess up.
Andrea
Check with your oncologist Andrea about what stage you are now. There are places on the internet that explains the different recurrence such as local, regional and distant. Check also about Arimidex being the problem on your hair. I posted below in another post on the possibility of Arimidex instead of Herceptin.
I always believe it is best to check with your doctors than believe something off the internet.
I wish you well in this journey, Andrea.
Best,
Doris0 -
Thank youBella Luna said:Andrea... sorry to hear the
Andrea... sorry to hear the cancer came back, but your persistence in having the lump biopsied saved your life. I am glad you have started with treatment. I was triple positive( Her 2, Er, Pr +) and received six rounds of chemo( carboplatin, taxotere, and herceptin), herceptin for a year, and six weeks of rads. Her2 is a very aggressive cancer. I wasn't going to take any chances, I went full force with the plan of attack my oncologist lined up for me.
Take care, God bless.
PS I had minimal side effects while on herceptin. Hair did fall out with chemo, it grew back thicker than ever!
Thank you for your response I am really thankful that I chose to have the lump checked out but I am still so angry that I am even having to go through this again because of their mess up. The doctors are not happy with me for not doing the radiation but I just could not make myself go through that. I have been in Iraq/Afghanistan and had not been that anxious or upset as I was over the thought of radiation. Even yesterday the doctor was still trying to educate me on radiation. He asked me "why are you not having it?" I said let me ask you a question first "why did you wear that tie this morning?" he said because he wanted too I told him he answered his own question. Because I did not Want too. I am glad you went ahead and done the radiation as your choice. I guess I am just to stuborn for my own good sometimes. I have reconstruction on the 26th and ready to get this over with. I can deal with drug therapy but the waiting game is about to drive me insane since I am unable to go back to work until this part is over.
Thanks for letting me rant and I apologize for it!!
Andrea0 -
hellomom62 said:Andrea
First off thank you for serving our great country. I'm sorry you are having to go through this again. I myself have had recurrance. I've never had the drugs you are on but just wanted to wish you all the best. Positivity. God Bless.
Terry
Hello Terry,
I am so sorry you had a recurrance. I hope you are doing well and I will sure keep you in my thoughts and prayers. I thank you maam for your kind words. My job has been my life and for the 2nd time in 2 years it has been put on hold
. It will be okay though.
Again Thank you maam
Andrea0 -
helloMuschi said:Herzeption
I had chemo first (lost all my hair) than I had radiation and now I am on Herzeption for a year. My hair is growing back slowly again. Since I am doing Herzeption my bones are bad acking when I get up in the morning. During the day it is not so bad but when I lay down to rest (still weak) and get up again it hurts in my legs and back. I asked the Dr. if that is (normal)? and he replied that everybody is different. I just turned 66 and maybe age has some to do with it. I did real good when I was on chemo and radiation. Never got sick, only tired and hairloss.
I hoped it helped you and please stay in touch, maybe we can help each other more as we travel the same "road".
Ilona
llona,
Since I was still stage one I did not have to go through chemo. I am sad for anyone that has to go through it. My sister had stage 3 breast cancer last year(not HER2+) and she had to have surgery, chemo and radiation. She was a real trooper though it all. She did not have to use the drug Herceptin since we have different cancers, so I can not go to her to ask questions. I have had 3 treatments so far. The first one made me sick and tired but the other 2 have been okay. My hair is falling out though and the doctor can not tell me why. I have not ached as of yet other than where they are doing the reconstruction (expanders). Please stay in touch I agree we maybe able to help each other on this journey.
Andrea0 -
radiationMAJW said:Personally....
I would rethink about refusing radiation.....there are NO guarantees that they can keep you from having a recurrence with drugs or ALL conventional treatments combined....cancer is sneaky....I had one rogue cell that escaped chemo and radiation...now dealing with stage IV... and there is no cure for cancer...best we can hope for is remission...sadly at this time...It's all a very personal decision and we have to do what we feel is best for ourselves...personally I want and wanted all they could throw at this nasty disease...
Are you afraid of radiation? Why so adamant against it? Just curious...I've had it twice....
Wishing you the best...keep us posted, we care
As you said it is a personal reason and I just could not do it. I do know there is no cure for cancer and that I am taking a big chance but it is a chance I am willing to take. My sister went through radiation last year and breezed through it so I know what it is and what is all about. I will sure keep you posted and thanks for your best wishes
Andrea0 -
HerceptinSIROD said:Arimidex (Anastrozole) Is The Culprit!
I don't believe it is Herceptin that is the root of your hair loss. It is a rare side effect of Arimidex (Anastrozole) and will grow back once off the drug. Perhaps you can have your oncologist give you Tamoxifen instead. An older hormonal therapy drug but, a good one all the same.
Good luck to you,
Doris
I did not start the drug Anastrozole until yesterday evening so that would not have anything to do with my hair loss. It has to be the Herceptin as that is the only drug I was on for the last 3 months other than my regular medicine that I have been on for the last 5 years and they didnt make it fall out. I am just one in a million I guess.
Thank you maam for your help
Andrea0 -
AndreaAndreaLN said:hello
llona,
Since I was still stage one I did not have to go through chemo. I am sad for anyone that has to go through it. My sister had stage 3 breast cancer last year(not HER2+) and she had to have surgery, chemo and radiation. She was a real trooper though it all. She did not have to use the drug Herceptin since we have different cancers, so I can not go to her to ask questions. I have had 3 treatments so far. The first one made me sick and tired but the other 2 have been okay. My hair is falling out though and the doctor can not tell me why. I have not ached as of yet other than where they are doing the reconstruction (expanders). Please stay in touch I agree we maybe able to help each other on this journey.
Andrea
thank you for your reply. Did you change your diet since you are on Herception? I try to eat more healthy food, like more greens and fruits. I bought me a blender to make some healthy smoothies. I also have a terrific Juicer one of the best, but it takes so much time to clean it up after each use and I am tired of it. Smoothies much faster and I guess it does its job,nutrion and so on.
Please let me know how you feel about a healthy diet.
Ilona0 -
I would like to welcome youCR1954 said:Andrea.........
Welcome.
I am also HER2+. I had chemo and then Herceptin every 3 weeks for a year. I had lost all of my hair while on chemo, and my hair grew back while just on Herceptin. I had no side effects from it whatsoever.
Please talk to your doctor about your side effects. Hopefully, he/she can give you some answers.
CR
I would like to welcome you too Andrea, even though I am sorry that you are here. I am HER2-, so, I don't have any answers for you inre to Herceptin.
I do wish you the best of luck!
Hugs, Lex0
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