Learning more each time

rjjj
rjjj Member Posts: 1,822 Member
edited March 2014 in Breast Cancer #1
Hi everyone and thanks for all well wishes for my 2nd infusion yesterday. It all went well so far they said my labs were good (borderline but good for being on chemo) My Onc. told me the Herceptin will last a year and i can do it along with the radiation when my 6 mo.s are over, She said that is good and bad because it means i have a aggresive growing cancer but..Herceptin goes after aggressive tumors. I also will be on a hormonal estogen blocker therapy (pills) for 5 years. I don't know much about this, and she didn't elaborate on this subject. Would like to know if anyone else is on this. Guess this means i might be around for five years?? lol
Chemo nurses were very kind and sweet..brought me 5 wigs and a box of boobs in my size. One wig was brand new human hair.. and maybe i can do something with it and probably return the rest. They even gave me a couple cute hand knitted hats. God has been good not always giving me what i want but always what i need. Hope you are all having a great day and i am wishing the best for Moopie and Mimi for their next infusions.
P.S. I am not getting any threads in my E-mail inbox do you know what is up with that?

God Bless
Jackie
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Comments

  • fauxma
    fauxma Member Posts: 3,577 Member
    Glad it is going well
    SO glad to hear that it is going well. It must have brightened the day to have the wigs and hats given to you. My sister also has a more agressive tumor and had to do chemo, surgery, more chemo and now radiation and she will also do herceptin for a year. She is doing well and her hair is back, curly and cute and still short but adorable.
    I don't know about the threads problems. But if anyone knows the answer you will hear and maybe they can tell me why I can't open some of the threads. When I click on them, it tries to load and then goes to the can't be found screen. It has happened with the mammo clip thread, and three others. I know that they are accessible because I can see where the number of comments has increased. So any help is appreciated.
    My radiation is going well so far, but I don't anticipate any problems. Except that the second day my program crashed and I had to wait on the table while they rebooting it. Actually they said I could get up if I wanted and they would reposition me when it finished but it only took 10 minutes. I admit, though, that my arma was very stiff and the tech helped me move it. But then it was fine. Tuesday is the day you see the doctor/nurse but since I had only completed 4 treatments we decided to skip it. I didn't have anything to ask and nothing was wrong so I will see him/her next week.
    Stef
  • Chellebug
    Chellebug Member Posts: 133
    Info on Herceptin and hormonal estrogen blocker therapy
    I finished my year of herceptin in December. The nice thing about it is that it only targets the Her-2 protein. It doesn't go after all of the fast growing cells like the chemo does. So your hair will grow back when you're on Herceptin and there aren't really any bad side effects (though you might react to it initially as you body gets introduced to it). There are 3 ways to get the Herceptin. Once every 3 weeks, once every 2 weeks, and once a week.....each one obviously is a different dosage (but adds up to the same amount). I started out once every week while I was receiving Taxol. Then switched to every 3 weeks. Then when I started on a clinical trial drug that was infused every 4 weeks, I switched to every two weeks. That just made it easier for me to keep track of when I needed to come in. Your doctor probably has a preference on which dosage to use on you.

    Hormonal estrogen blocker therapy.....depends on if you're premenapausal or postmenapausal and on your onc's preference. It basically keeps your body from using the estrogen that is produced from your ovaries and your adrenal gland. Since your breast cancer is estrogen positive, they want to limit your bodies exposure to the estrogen.
  • KathiM
    KathiM Member Posts: 8,028 Member
    fauxma said:

    Glad it is going well
    SO glad to hear that it is going well. It must have brightened the day to have the wigs and hats given to you. My sister also has a more agressive tumor and had to do chemo, surgery, more chemo and now radiation and she will also do herceptin for a year. She is doing well and her hair is back, curly and cute and still short but adorable.
    I don't know about the threads problems. But if anyone knows the answer you will hear and maybe they can tell me why I can't open some of the threads. When I click on them, it tries to load and then goes to the can't be found screen. It has happened with the mammo clip thread, and three others. I know that they are accessible because I can see where the number of comments has increased. So any help is appreciated.
    My radiation is going well so far, but I don't anticipate any problems. Except that the second day my program crashed and I had to wait on the table while they rebooting it. Actually they said I could get up if I wanted and they would reposition me when it finished but it only took 10 minutes. I admit, though, that my arma was very stiff and the tech helped me move it. But then it was fine. Tuesday is the day you see the doctor/nurse but since I had only completed 4 treatments we decided to skip it. I didn't have anything to ask and nothing was wrong so I will see him/her next week.
    Stef

    Ironic...I'm a computer consultant...
    and for one of my rads for the rectal (face down on the table, bare bottom in the air), the entire center lost power...emergency lights, but I was sealed in the room by the heavy door...the techs talked me thru it, but then had to reboot the rad system, which also took time...by this point, I said "You know, I could fix this if you can get me out there!".

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    Chellebug said:

    Info on Herceptin and hormonal estrogen blocker therapy
    I finished my year of herceptin in December. The nice thing about it is that it only targets the Her-2 protein. It doesn't go after all of the fast growing cells like the chemo does. So your hair will grow back when you're on Herceptin and there aren't really any bad side effects (though you might react to it initially as you body gets introduced to it). There are 3 ways to get the Herceptin. Once every 3 weeks, once every 2 weeks, and once a week.....each one obviously is a different dosage (but adds up to the same amount). I started out once every week while I was receiving Taxol. Then switched to every 3 weeks. Then when I started on a clinical trial drug that was infused every 4 weeks, I switched to every two weeks. That just made it easier for me to keep track of when I needed to come in. Your doctor probably has a preference on which dosage to use on you.

    Hormonal estrogen blocker therapy.....depends on if you're premenapausal or postmenapausal and on your onc's preference. It basically keeps your body from using the estrogen that is produced from your ovaries and your adrenal gland. Since your breast cancer is estrogen positive, they want to limit your bodies exposure to the estrogen.

    Great info!
    I was surgically menopausal (total hyster with my rectal cancer surgery), so I could actually choose...Tamoxifen or an aromatase inhibitor. Bone density scan revealed my pre-cancer osteopenia had worsened with the chemo to osteoporosis. The AI's have a bit more aggression toward density, so I opted for the Tamoxifen. It's major trouble is increased possibility of uterine troubles (no brainer for me...no uterus, lol!). My bone density, after 2 years, is better.

    My advice is to ask your oncologist what is right for you.

    Hugs, Kathi
  • RE
    RE Member Posts: 4,591 Member
    second chemo
    So glad it all went well for you Jackie. You sounds like you are doing well and that is wonderful! Keep your spirits high and your beliefs strong.

    My best to you,

    RE
  • Aortus
    Aortus Member Posts: 967
    RE said:

    second chemo
    So glad it all went well for you Jackie. You sounds like you are doing well and that is wonderful! Keep your spirits high and your beliefs strong.

    My best to you,

    RE

    Yay, Jackie!
    Glad the second infusion went well... hope Moopsy and Mimi do as well on Friday! You should also be happy to know we went out and got a prepaid Verizon phone. Most of her family in Tennessee is on Verizon, and likes the service Verizon gives. Now she can talk to them all for 99c a day. Whoopie!
  • seof
    seof Member Posts: 819 Member
    Sorry, too unsavvy on
    Sorry, too unsavvy on computers to adress the email issue, but I do have experience with radiation, chemo, and herceptin. I had herceptin along with chemo, then a break for radiation and surgery, then more chemo and herceptin again. Feb. 9 is my last infusion. I have had it once in 3 weeks. Since I have been on herceptin by itself, the only side effect is continued chemo-induced menopause. I am 44, doc says I may go back to a regular cycle anytime up to a year after herceptin ends...if I don't by then I may not ever (once again...no absolutes or guarantees). In my opinion that would be just fine. I do not know about the other hormone-based therapies.

    I hope things keep on going well for you.

    seof
  • mrmauld
    mrmauld Member Posts: 44
    a lot in common
    hey, I'm so glad to hear that your second treatment went well , I get my second treatment on Friday. I am scared and like you I have so many fears about my hair and i coming out and when. I have been counting my days also and I am on day 12 with headaches that I had no idea was a side effect until I come to this site. Also, I am not sleeping well and my back is bothering me a lot are these side effects too? I'm not sure if my reply's are getting out. either. thank you so much for just being like me and going through some of the same things that I am. God Bless Mrmauld
  • Aortus
    Aortus Member Posts: 967
    mrmauld said:

    a lot in common
    hey, I'm so glad to hear that your second treatment went well , I get my second treatment on Friday. I am scared and like you I have so many fears about my hair and i coming out and when. I have been counting my days also and I am on day 12 with headaches that I had no idea was a side effect until I come to this site. Also, I am not sleeping well and my back is bothering me a lot are these side effects too? I'm not sure if my reply's are getting out. either. thank you so much for just being like me and going through some of the same things that I am. God Bless Mrmauld

    Not sleeping well
    Moopy didn't sleep well either after receiving her first infusion. I posted a question to this board, and within a couple of hours members of the Pink Sisters were sharing their experiences. Basically, the steroids used to help control the nausea were getting Moopy all riled up, making it impossible for her to get "comfortable." This board is an unbeatable source of information!

    We discussed this issue with the Nurse Practitioner last week, and she substituted Ativan for Compazine in Moopy's anti-nausea regimen. I guess we will see how well it works, but I'm betting the Moopster will do just fine. Hope and pray you do too!

    Joe
  • rjjj
    rjjj Member Posts: 1,822 Member
    mrmauld said:

    a lot in common
    hey, I'm so glad to hear that your second treatment went well , I get my second treatment on Friday. I am scared and like you I have so many fears about my hair and i coming out and when. I have been counting my days also and I am on day 12 with headaches that I had no idea was a side effect until I come to this site. Also, I am not sleeping well and my back is bothering me a lot are these side effects too? I'm not sure if my reply's are getting out. either. thank you so much for just being like me and going through some of the same things that I am. God Bless Mrmauld

    Hi Mrmauld!
    We do have quite a bit in common most I wish neither one of us had but am so happy to have your support online. I did get your reply so something's working, I found the headaches went away as soon as i got my hair buzzed now i am just trying to get used to it. It is kind of fun trying on wigs and hats and scarves........but i'd rather have my hair back. At least we know this is only temporary and not a big price to pay for our lives.
    I will pray that everything goes great for you on Friday as i will for Mimi and Moopy who are in this group and also going for infusions Friday. You will find you have alot in common with all of these wonderful women who faithfully post. We find many answers to our problems and support. Because of all these strong, sweet sisters in pink!! Glad to meet you and welcome!

    God Bless
    Jackie
  • young_one
    young_one Member Posts: 67
    Aortus said:

    Not sleeping well
    Moopy didn't sleep well either after receiving her first infusion. I posted a question to this board, and within a couple of hours members of the Pink Sisters were sharing their experiences. Basically, the steroids used to help control the nausea were getting Moopy all riled up, making it impossible for her to get "comfortable." This board is an unbeatable source of information!

    We discussed this issue with the Nurse Practitioner last week, and she substituted Ativan for Compazine in Moopy's anti-nausea regimen. I guess we will see how well it works, but I'm betting the Moopster will do just fine. Hope and pray you do too!

    Joe

    I love Ativan. Ativan is
    I love Ativan. Ativan is every bc patient's friend. I don't know how it works for nausea but it definitely makes all the bc crap seem a tad better.
  • mrmauld
    mrmauld Member Posts: 44
    rjjj said:

    Hi Mrmauld!
    We do have quite a bit in common most I wish neither one of us had but am so happy to have your support online. I did get your reply so something's working, I found the headaches went away as soon as i got my hair buzzed now i am just trying to get used to it. It is kind of fun trying on wigs and hats and scarves........but i'd rather have my hair back. At least we know this is only temporary and not a big price to pay for our lives.
    I will pray that everything goes great for you on Friday as i will for Mimi and Moopy who are in this group and also going for infusions Friday. You will find you have alot in common with all of these wonderful women who faithfully post. We find many answers to our problems and support. Because of all these strong, sweet sisters in pink!! Glad to meet you and welcome!

    God Bless
    Jackie

    I will also keep Mimi and
    I will also keep Mimi and Moopy in my prayers as well as you too Jackie. Thanks for all being there.
  • mrmauld
    mrmauld Member Posts: 44
    Aortus said:

    Not sleeping well
    Moopy didn't sleep well either after receiving her first infusion. I posted a question to this board, and within a couple of hours members of the Pink Sisters were sharing their experiences. Basically, the steroids used to help control the nausea were getting Moopy all riled up, making it impossible for her to get "comfortable." This board is an unbeatable source of information!

    We discussed this issue with the Nurse Practitioner last week, and she substituted Ativan for Compazine in Moopy's anti-nausea regimen. I guess we will see how well it works, but I'm betting the Moopster will do just fine. Hope and pray you do too!

    Joe

    thank You so much I needed
    thank You so much I needed to hear it's not all in my head
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    Infusion
    Hi, Jackie, I am so glad to hear your infusion went well and you got wonderful news about the additional treatments. Joe and I were thinking about you today. The herceptin is great news; unfortunately, I am what they call triple negative, so I have only the chemo and radiation. God willing, that will be enough.
    Anyway, I am so happy for your good day--and you look beautiful! I hope I can be as brave when my hair is all gone.
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    mrmauld said:

    I will also keep Mimi and
    I will also keep Mimi and Moopy in my prayers as well as you too Jackie. Thanks for all being there.

    Friday
    Thanks everyone for your good thoughts and prayers. Mimi and Mrmaud and I will have a good day on Friday, right guys? I am nervous about it but feel more confident about Ativan --thanks for the good word on that. Being able to sleep despite the steriods will be a blessing. And, the compazine really scared me when it caused my jaws to shut. It was as if I had magnets on my upper and lower jaw, forcing them together. I was a little freaked. Called doctor, and was told to take Benadryl as the jaw-locking thing is a common side effect. They used to hand out benadryl with the compazine (of course, the nurse told me that AFTER I had the reaction).
  • phoenixrising
    phoenixrising Member Posts: 1,508
    Jackie you look superb. And
    Jackie you look superb. And look at your husband, he looks so proud of you. I'm glad you're handling the chemo pretty good, not much further to go for this particular chemo anyway. I don't have any experience with herceptin but I haven't heard many complaints about it. My husband loved it when I was bald, everytime he walked by he'd have to rub my head. Must of thought I was a genie or something. Actually it felt pretty good once it all came out and showers were real simple as my hair was quite long before. Your spirits sound good and that's wonderful. Hope all goes as well.
    love
    jan
  • KathiM
    KathiM Member Posts: 8,028 Member
    I LOVE the new you!!!!!!!
    My beau thought it was great when I had no hair. He has none, so we could swap stories...lol...BUT HE has a full BEARD!!! I refused to go THAT far!!!

    BIG Hugs, Kathi
  • CrystalW
    CrystalW Member Posts: 31
    Herceptin
    Jackie, You look awesome!!!! I posted a "naked " picture of myself on here. Hope it comes thru since we are all sharing :-) I took Herceptin on a study when I was going thru treatment (2002 and '03). My study was the last leg of the study so I took the standard "adremycin/cytocin(sp) and then taxol. I took taxol once a week for 12 weeks then started Herceptin in conjuction with my radiation after taxol. Radiation was 7 1/2 weeks every day along with an infusion once a week for 1 year. This was in 2002-2003. After my clinical trial closed in (i was done with treatment in November of 03) 2004, the FDA approved Herceptin for treatment. Herceptin was the last chemo I did. I will celebrate my 7th anniversary of dx on valentines days. I am still on the study as they watch us for a 15 year period. So I go back for a visit once a year and have a MUGA scan of the heart (because this drug can do heart damage)along with my Mammograms and regular check ups with the oncologist. Keep posting here for support. The sisters in Pink all known your pain and your victories. You have a great big cyber hug from me.....Keep smiling
    Crystal
  • lynn1950
    lynn1950 Member Posts: 2,570
    Hi Jackie
    I hope you are feeling OK after your treatment. I am also praying for Moopy and Mimi. Just remember: Ativan IS very nice. I have fond memories of it. (The steroids kept me hopping too.) Compazine was not helpful. Zofran was good and I've heard it's good for carsickness, too and it doesn't make you drowsy! My eye doctor told me that. Unfortunately, he knows about it because his wife has cancer.

    I am a little bit farther along than you, but from reading your bio, our cancers sound very similar, except that I am HER-2 negative. I finished radiation in October and started taking Arimidex. Thanks, Kathi, for sharing that the chemo can CAUSE osteopenia or osteoporosis. Before chemo my bones were just fine, but when I had a bone scan afterwards, I had osteopenia and have wondered if that effect was from the chemo. That bone scan is important! I take a drug called Boniva once a month to prevent osteoporosis from the Arimidex.

    There is so much to learn - so many changes. It's not only the club nobody wants to join (as Lili says), it's the post-grad education none of us wanted to take!

    Remind me - are you from rural Montana? I live in rural Idaho; I moved here from Montana and always loved living there (Polson, Fortine, and Eureka).

    I too am not getting threads in my email inbox. I thought I did something bad!

    PS. You and your husband look beautiful together!
  • phoenixrising
    phoenixrising Member Posts: 1,508
    CrystalW said:

    Herceptin
    Jackie, You look awesome!!!! I posted a "naked " picture of myself on here. Hope it comes thru since we are all sharing :-) I took Herceptin on a study when I was going thru treatment (2002 and '03). My study was the last leg of the study so I took the standard "adremycin/cytocin(sp) and then taxol. I took taxol once a week for 12 weeks then started Herceptin in conjuction with my radiation after taxol. Radiation was 7 1/2 weeks every day along with an infusion once a week for 1 year. This was in 2002-2003. After my clinical trial closed in (i was done with treatment in November of 03) 2004, the FDA approved Herceptin for treatment. Herceptin was the last chemo I did. I will celebrate my 7th anniversary of dx on valentines days. I am still on the study as they watch us for a 15 year period. So I go back for a visit once a year and have a MUGA scan of the heart (because this drug can do heart damage)along with my Mammograms and regular check ups with the oncologist. Keep posting here for support. The sisters in Pink all known your pain and your victories. You have a great big cyber hug from me.....Keep smiling
    Crystal

    Crystal, I love that number.
    Crystal, I love that number. 7 yrs!!! Congratulations!! You give us all hope. Love your pic.
    jan