2009 Herceptin group

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    DIANA.. you poor thing,... I thought you were partying it up with family and coworkers and that is why I had not heard from you... SO SORRY you have been sick... that stinks!! It sounds like you got to enjoy the country concert though. how did Erick hang?LOL.. Todd would DIE if I dragged him to a country concert..LOL..... I hope you get to feeling better fast.... !

    Angie.. I HATE all the FEAR we live with.. it totally sux. It is the worst of all this I think. I am sorry you are dealing with this now. I am sure it is NOT mets!!!! NO NO NO!!!!

    I might look him up Tracey. My Onco is ALL about treatment.. she will want me to do rads.. she thinks 1% matters so do it all... so I will be on my own in this...I think I will definitely contact your guy.. thanks!

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  • d16
    d16 Member Posts: 2
    edited January 2009

    Hi, I'm new to this but saw your post and I am planning on doing the Beth study.  I saw my oncologist today but have to wait for treatment until my fluid stops building up under my arm from lymph node removal.  Am I doing the right thing joining this study.  I'm pretty anxious for these chemo/Herceptin treatments to begin- scared out of my mind.  Any advice?

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  • traceyz
    traceyz Member Posts: 745
    edited January 2009

    Ang, NO NO NO you DO NOT have liver mets!! Dont even speak that in the atmosphere because words are power! Chemo does SOOOOOOOOOOOOO many wierd things to our bodies, joints and bones! So I am sure its due to chemo and NOT liver mets! You are FINE! You must tell yourself that. Chemo has left you with a cancer free body! Okay? Okay. I am not saying that something isnt going on but its' NOT cancer. 

    Laura, If your onc would have you go through 6 weeks of rads for a possible 1% benefit in survival then you should also get another onc's opinion. I did and they both agreed I could decline rads and they would be fine with it. Keep in mind 2 things. The first is something that Mona over on the October thread pointed out. IF you have rads now and by some freaked out freak of nature you had a local rec in your scar tissue. You would not be able to have rads again as a treatment option. Also rads COULD (although rare) cause a 2nd cancer somewhere else down the road. I am NOT trying to tell you what to do but, I care about what you are going through and I just want you to be as informed as possible so you can arrive at the best and most appropiate decision for your situation.Wink BTW I think it is so awesome that you own your own business, I wanna be like you when I grow up!

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  • traceyz
    traceyz Member Posts: 745
    edited January 2009

    D16,

    Hi and I am sorry you are now apart of this club. It's a club nobody wants to join but together we get though it as will you. Chemo is a cake walk for some and others not so much. But if you listen to your body and rest when you need to, eat good, and make sure you get your naseua meds, I am sure you will do just fine. If you have ANY questions you have come to the right place. By the way what is the Beth study?? We are here when ya need us!

    Best wishes

    Tracey

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    Thanks Tracey.. I was 28 when I opened the Salon...  I had been home with children until that point.. scary stuff for me... lol..

    I used to look really young.. when I was 28 people thought I was 19-21.. so EVERYONE who walked in the door those first two yrs would ask my stylists if my "mommy and daddy" bought the place for me... grrrrrrrrrrrrrrrrrrrrr .. I really felt I had to prove myself... now,13 yrs later.. I have to remind myself, as I am breaking up a fight amongst stylists.. that I "am very lucky I own my own business" LOL LOL.......

    I think being a Flight Attendant would be sooooooooooooooooo cool... How many places do you get to see... simply fun!

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  • mamakaren
    mamakaren Member Posts: 225
    edited January 2009

    Hi Sisters, Today i went to my appt and they scheduled me an echo for next week but i still got my Herceptin. They say that everything that i feel is anxiety but if my headaches get worse and i vomit then i need to get a MRI for my head. Just to make sure everything is okay. I was freaked out when they were gonna tell me some results about blood coming out of my rectum. They said didn't you go to the emergency for that?? I said NO that's not me then they showed me some paperwork with my name and DOB i don't know what they heck happened! All i  know is that i was scared! As it is i feel like i'm going crazy then they say are you sure that wasn't you?? I guess i have to make an appt for my primary to get some anxiety meds, they just don't want to give me anything I just dont' understand why.

    Diana I'm so thrilled for you! Your almost there girl! So lucky everything has been going good with no SE.

    Ango74, I would think that they would give you some antibiotics for that, It just don't sound right. I hope that everything gets better for you.

    Lots of Love, Karen

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  • ango74
    ango74 Member Posts: 255
    edited January 2009

    D16-Welcome.  I am also doing the Beth study.  You have to do what is right for you.  I did some research on Avastin and I knew there were some risks involed but, there are risk with the chemo drugs too.  Avastin has been shown to delay recurence and with us being HER2+ we have a strong chance of recurence.  I felt it was the right choice for me.

    Estepp, Tracey and Mommakaren, Thanks for the kind words. I am trying to think positive. There are  a lot of things it could be. Mommakaren, my onco gave me Xanax when this first started happening.  I'm surprised your's wont prescribe you anything.  Hopefully your headaches go away.

    I don't know about ya'll but I can't wait till my hair starts to grow back in!

    Angie

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  • GramE
    GramE Member Posts: 5,056
    edited January 2009

    I had thought about going to a podiatrist for my painful toe nails, but how can you tell if they know anything about Herceptin and SE?   Onco and bc doctors do not recognize it as a true side effect, so what is a foot specialist going to do?   When my toe nails lifted, I asked the onco if it was ok to snip them off, since they were dead and she agreed to keep fungus and infection from getting under.  I too have snipped my finger nails as close to the end of my finger tips as I can stand, still hurt when I do much of anything with my hands.   They appear to be starting to grow out and more normal looking.   Toe nails are gonna take a LONG time to get near normal.   

    Karen, your anxiety is understandable.   Remember that Herceptin is NOT chemo, it is an antibody that attacks our HER 2.  But if it is such a potent "attacker", it HAS to cause some side effects - MY opinion.   Keep in communication with your doctors and don't let them tell you that it is nothing.  

    Hugs,  Nancy 

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  • hiker
    hiker Member Posts: 22
    edited January 2009

    My year will be up in May, but I love to party.  TO: ejlj-- I have wondered why  the Drs feel that one year is the correct # of herceptin doses. I'll be interested to hear about your 2 year study.

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    Ladies... question:

    I will start my 3 week Herceptin Monday. Can we drink alcohol on Herceptin? There is nothing on the Internet about it.. I have searched. I asked my Ocno... but she told me NO ONE ever should have more than a drink a week due to how bad alcohol is. ANYWAY... she is a fantastic Oncologist.. but no fun at all...LOL... anyway... she won't tell me as she does not approve of any one drinking. I like to have a few glasses of wine ( 4-5 to be exact) on the weekends with hubby and or friends. Is this ok on Herceptin?

    TY Ladies... I hope all who are having troubles are feeling better today..Karen, you doctor sounds mean and uncaring! I would go talk to your family doc about the meds you need and don't feel on darn bit ashamed!

    Laura

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    Hi Hiker!

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  • traceyz
    traceyz Member Posts: 745
    edited January 2009

    Hi Laura,

    Gosh I sure hope you can have drinks on herceptin. I have been on it since June and have had no real problems. I average a few per wk. I think everything in moderation is fine. Trust me if drinking on herceptin was a no no my onc would have made that VERY clear.

    Tracey

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    That is good to know Tracey! My ocno is that way.. but she is so against drinking for ANYONE alive...lol..... I can never get a straight answer... I told her one weekend I was going to drink a WHOLE bottle of wine no matter what she said  and she smiled and changed the subject.. so I did figure that if it was going to kill me or make me turn purple or something.. she would have told my right there...hehe....

    But I always feel better when I ask my sister here..... !!

    Thanks!

    Laura

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  • GramE
    GramE Member Posts: 5,056
    edited January 2009

    I have had only one very weak alcoholic drink since my first chemo last June.   It was MY choice, = the onco said moderation is the key word.   The chemo zapped my tumor - who can say if no alcohol helped or not???   I am no prude, used to have a "nekked" vodka martini (no vermouth or fruit) every night or a rum and coke. I do not like wine, but reports are that a glass or two is good. And a mimosa is very tasty...  

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  • lencass
    lencass Member Posts: 14
    edited January 2009

    Hi there,

     OMG I gulped when I read your wine question cause I gotta tell ya - as soon as that chemo was done I opened my wine bottle!!!!  herceptin or no herceptin.     Truthfully though since chemo I can handle about a half glass and then my eyes start to close.    but other than that noo problem for me with the herceptin. 

    Has anyone out there taken pertuzumab on a trial?    I just found out that instead of a full year of Herceptin they're including my pertuzumab into the count so I'll be done much sooner - wondered if anybody else has run into that?

    Thanks,

    Len

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    Len, that was funny!!! :)

    Sorry, I do not know about pertuzumab.

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  • GramE
    GramE Member Posts: 5,056
    edited January 2009

    Len, you are in Canada?  it may not be available here in the USA.  I have not heard of it, and I cannot do trials or my insurance will cancel me.   Anyone in the USA know that they are getting the real drug if on a trial?   If I am going to volunteer, IF I could ... I would want the real thing and not a placebo.   

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  • ango74
    ango74 Member Posts: 255
    edited January 2009

    Lefty-I am on the Beth trail.  It is an open study so I was told from the get go that I would get Avastin.  I don't think I could stand not knowing. I think most trails seemed to be blind meaning you don't know what your getting.

    I had a few drinks while on chemo. I am not much of a drinker to begin with but on my birthday I had a bloody mary, it was so good.  I told my onco and she didn't say anything about it. You know you gotta have some good with all this bad.

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  • traceyz
    traceyz Member Posts: 745
    edited January 2009

    Laura,

    BTW you still look young and VERY beautiful!! So the 28 yr olds aint got nothin on you girl!!

    Tracey

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  • lencass
    lencass Member Posts: 14
    edited January 2009

    Lefty,

    I am in Canada - I just checked the site and you're right -  they're not testing pertuzumab in the States.    I agree with you guys - I could only do an open trial - not knowing would make me slightly nuts.  

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  • ejlj
    ejlj Member Posts: 211
    edited January 2009

    angie,  I'm having pain also under my rib cage, mostly on left but sometimes on right.  I pretty much can always feel it especially when i press in that area.  I know your concerned cause i am too.  i haven't mentioned it to my onc yet but was planning on it during my next herceptin tx.  Let me know how your scan goes.  When is it?  Tina

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    Tracey... ~ blush~... :) Thank you for the kind compliment...

    I hope you all get clear scans.. I am sure you will!! Isn't this fear just crapola! I hate the fear.. the constant knowledge of my body...

    Lord, please let all scans be clear for the beautiful ladies on this BCO thread!!!!!!

    Hang in there ladies.... enjoy your Sunday with family and/or friends!

    Love,

    Laura

    ps... Diana. I have been trying to reach you via-internet... I am gonna call if I do not hear from you soon... you are worrying me after you being sick all last week!

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  • ango74
    ango74 Member Posts: 255
    edited January 2009

    Tina- When I first brought this up to my onco she thought it was do the stomach issuse that chemo causes.  She thought maybe my colin was pushing up into that area.  But, I'm not having those issuses and it is still there.  My scans are this Monday.  I'm not really nervous, there are several things it could be.  Then I have my next tx on Wed so I hope I know by then what the heck is going on.

     Laura-you are right the fear is the worst part of this. I was doing really good and not worring about mets but now I swear I am having symptoms of bone, liver and brain mets.  Funny this all started the week after my last TCHA tx.  So, I do think some of it is in my mind.

    Hope everyone has a great weekend.

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  • mamakaren
    mamakaren Member Posts: 225
    edited January 2009

    Laura, From your mouth to the Lords ears! That we may all be blessed!

    ango~ This fear can sure kick us in the @**! But just hang in there and keep up your faith.

    I was told that i could drink but only a couple drinks. I have a couple captain rum and coke's or i'll drink a sangria with fruit (yummy). I went last Friday for my other mammogram so i'm trying not to think negative but that darn fear sure does know how to get the best of me. I hope that everyones scans and test come out good!  We have suffered enough and need some peace of mind. I have been feeling better, maybe it's because i went to Mexico for the whole day and got away from here. I know they say that we cant runaway from our problems but darn i forgot about all this bullshit and on the drive home I was saying shit i have to go back! It's nice to get away by yourself once and a while and enjoy the long drive. Or heck maybe it was the mix drinks that made me feel good, It seems to me that i feel like shit when i don't take alcohol with Herceptin who knows. Have a great Sunday my sisters

    Lots Of Love, Karen

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  • traceyz
    traceyz Member Posts: 745
    edited January 2009

    Karen,

    You are so funny, you crack me up!! You are so right this fear stuff is kick butt, but together we can overcome it. I am glad you had a day that you were able to get away and not have to think about this stuff, good for you chickie!! chat wit cha later.

    Tracey

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    Hello fellow Herceptin pals!

    I start back TOMORROW !!! wahoooo.... I am 4 weeks past surgery and I start Herceptin alone tomorrow... here I go.... hopefully no side effects.. did not have them while taking the Taxol with it... we'll see... I know there can be SE... as I have seen here from you beautiful gals! I hope you all are feeling SE free today!

    Take care and I am toasting a nice Golden Rhine tonight to you!

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  • GramE
    GramE Member Posts: 5,056
    edited January 2009

    Good luck Estepp.  I have had 2 H alone and next one is Thursday.   The neuropathy in my ring and little fingers is back, and some leg bone pain/achiness.  Otherwise, it is not too bad.   

    Has anyone has vision problems?  I do not know if it is related to Herceptin, but I always had excellent distance vision and now I can hardly read street signs.   It could be that I have not had an eye exam in 4 years.   However, on the opposite end, my close up vision is much better and I do not need glasses on the computer or to read most things.   

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  • Mocity
    Mocity Member Posts: 451
    edited January 2009

    I am praying this nail pain and nails coming off has to do with the Taxol and nothing to do with the Herceptin.  I start Herceptin alone this week and just praying my nails stop this mess.  Lost two big toenails and it looks like two fingernails are following.  Other nails are dark purple.  I wonder when that will go away?  I am having to work from home becasue i can barely walk.

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  • ejlj
    ejlj Member Posts: 211
    edited January 2009

    hey cristlc-sorry your in such pain with those darn toes!  I was thinking of you and the others this w/e when my large toenail finally grew out enough for me to cut it all the way back without any pain and to my surprise once i cut through all the gross layers, i actually had a decent looking toenail underneath!  My last dose of Taxol was in June and I think my nails are well on there way back to normalcy and I don't see any indication of further damage since i restarted herceptin in October.  good luck  tina

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  • lencass
    lencass Member Posts: 14
    edited January 2009

    Hey cristlc,

    I finished my chemo in December and my nails were sooo painful- could barely stand to touch anything even the slightest pressure made me yell.     I've been doing Herceptin only for about 6 weeks and my nails are muuuch better. Pain is pretty much gone.  Hope you get some relief soon.   Good Luck,

    Len

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