2009 Herceptin group

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited May 2009

    Good for you, Lisa!  I know when my husband did mine, I said "I bet you never thought this was something we would do together!" And we were able to laugh! 

    Not the birthday present you would have asked for, but nonetheless: Happy Birthday to you!

    I just did #3 of 6 yesterday. If we don't hold on too tightly, time does seem to flow a little faster. I hit the 1/2 way point and I feel like I just started. You are right behind me and we will finish this strong together!

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  • Journey-Girl
    Journey-Girl Member Posts: 37
    edited May 2009

    I had my first TCH infusion last Thursday (21st) and my first Herceptin only yesterday (28th).  Still have hair and am just waiting (dreading) the day it starts coming out... Lisa, how many days was it for you ?  Sounds like around day 14?.. is that right ?      Since I only had Herceptin yesterday, I was curious to see how it would affect me...  last night my hip bones seemed to just ache.. but today feel fine.  Is this normal ?    My white cell count is way down and they put me on Cipro to fight infection..  again, is this something others have done also ?    Thanks girls !

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited May 2009

    My hair started falling out around days 17-18. I buzzed it partway down and then buzzed it even lower a few days later. BUT the rest never did fall out and what didn't fall out is growing back! More on the top, less on the sides - some patchy bald places. Quite unattractive but not completely bald. No more fell out after the 2nd tx, and now I've had the 3rd and am waiting to see what happens. Weird. Not what I expected at all. I am getting used to it -got some nice scarves and it's not so bad now that the tenderness & itching is all done.

    Let us know what happens. Good luck.

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  • cheers247
    cheers247 Member Posts: 270
    edited May 2009

    Lisa - HAPPY BIRTHDAY!!  My hair came out in clumps to, it felt nasty.  I go witout a wig or hat a lot lately, it's just too hot out right now.  I am doing the race for the cure on 6/7 here in Seattle.  My next treatment is Tues. 6/2, I'm starting a new regimine, Adriamycin & Cytoxan, I don't tolerate the TCH combo, I'll go back on H after the AC is done.  4 treatments every 2 wks.  Lots of LOVE!  Jessica

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

    Hi everyone.  I think I posted here earlier in the year.   I am winding down on my every 3 weeks of Herceptin only. If I calculate right, only 7  more to go...   the end of September.   

    If  you are getting A/C, you will pee red for a day or so.  Drink LOTS of water or juice to flush your system and keep hydrated.  And after my A/C I got a neulasta shot within 48 hours for red blood cells.   And take Emend and zofan for nausea.  It made me queasy, and I ate very small amounts of food often - like grazing as I passed the fridge.  Soft foods and cold foods tasted best.  

    I was off herceptin for about 6 weeks after Taxol and Herceptin and lumpectomy and the neuropathy went away completely.  You cannot tell me that Herceptin did/does not cause it, as I have it since I started H only in January.   And after each treatment, I take 2 tylenol with codeine the first night so I can get to sleep - bone aches.   Off and on my bones ache but not all the time.I notice that I am more tired, fatigued with each treatment.     

    The only shoes that are comfortable are crocs or open back slip ons.   If my toes nails ever grow back completely, I will be in sandals but for now, they are too ugly to expose to others.    

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  • Lisa1970
    Lisa1970 Member Posts: 47
    edited June 2009

    Hi to All!,

     Journey-Girl ~ My hair started to fall out 05/25. By 05/28, it was all over and that was exactley at 14 days.  I have had 2 tx of just Herceptin and have done great on it, no se's at all at this point. My 2nd tx of tch is this thursday and am hoping it goes as well as the 1st x did.

    Amyisstrong ~ We will make it through this! Every night I pray for all the people in the world fighting there diseases and pray for little to no se's in their tx & to please continue to give me the strength, mentally & physically, the courage, the determination and the bravery to make it through this.

    Was wonderig how you all have changed your eating habits? Like, eating meat, etc?

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  • SusieMTN
    SusieMTN Member Posts: 795
    edited June 2009

    Haven't posted here for a while.  I do another Herceptin treatment tomorrow and I will be done in Aug!  No SE right now from Herceptin, just from the AI the doctor has me on.  It is weird to think that at the end of May it has been a year since this first started.  Never knew how tough I am!  Those on Chemo and Herceptin, my heart goes out to you, Chemo is tough but you will get thru it!  Have a nice night!

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  • mamakaren
    mamakaren Member Posts: 225
    edited June 2009

    Hello everyone.

    I finally started my Herceptin and i feel good. It was an awful feeling because the room was full and i was sitting by a patient that was having a bad reaction to the chemo and it made me scared. I asked for some adivan but they refused because i was driving. I went to work for a little while then went home.

    My Birthday is June 10th and i will be going to my favorite place Rocky Point!! Yay I'm so excited this Birthday is gonna be different. It's not that i'm being selfish but I will be going without my kids or my Husband. I will be going with my nana. I know what your thinking.... Believe me it's like if i'm taking a teenager with me. She is so much fun, she is 76yrs but has the heart of a 19 yr old. So i'm in for alot of fun. I really feel that I need to start taking care of myself and for once thinking about myself and heck I really deserve it!  I love the ocean, it brings so much peace to me.

    We are gonna leave on the pink party bus on June 12th and return on the 14th. Free drinks on us  have a good one gals!

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

    I had herceptin only today and when it was almost all done I got chills and a bit shaky.  They stopped the drip and left the saline going for about half an hour, started it again and all was good.   

    By the time I got home, I was very achy.  Some of it could be the 2 inches of rain we got yesterday and today it has been drizzling most of the day.  OR it could be partly old age...   It is gonna be a tylenol 3 before I head off to bed later only 5:15 pm now.    

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  • bwbly
    bwbly Member Posts: 82
    edited June 2009

    Hello, ladies! Just found this thread, so haven't read all the posts yet.

    I started weekly Taxol/Herceptin in March ... just had tx #11 of 12. Then I do 4 rounds of AC, then back on the Herceptin. So I guess I'm here for a while.

    Bunny

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  • flower14
    flower14 Member Posts: 5
    edited June 2009

    Had my third Herceptin Monday.  Had a bad reaction, warm, tingle, and numbness throughout body, face, neck and head.  Throat became swollen.  Like an allegic reaction from bee sting/peanut allergies.  The Herceptin was almost done.  They stopped it right away and gave me Benodryl, tagamet, dexamethasone to counter-act it.  Got severe chills so they then gave me demoral for that.  Has this happened to anyone else?  They want me to try again Monday, giving me all the pre-meds first.  When the meds wore off the allergic reation happened again and I went to the ER.  They loaded me up some more and sent me home after about 4 hours.

    Took meds yesterday also to prevent reaction.  Doing good today, but scared to go through it again.

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  • joan11847
    joan11847 Member Posts: 13
    edited June 2009

    thanks plakatakr and Boo307

    Right now I am not so concerned about the chemo (TCH) or the side effects, EXCEPT how it will effect my job.  I am a teacher (special education) in an elementary school and the children notice everything.  I do not want them to feel uncomfortable.  I also am wondering if I will be too tired to work. It takes alot of energy to work with 10 year olds and I am 62, but usually I have a lot of energy.  When I read the comments posted, most of them sound like the women do not work?? If anyone has a similar worry or has worked throughout chemo, please tell me how it went for you.

    Joan11847 

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  • HensonChi
    HensonChi Member Posts: 357
    edited June 2009

    Hi Joan,

    I did TCH last fall with the neulasta shots every 3 weeks, and I have been doing herceptin all year.  I teach sped 6th grade.  I am still doing herceptin and still wearing a wig.  I missed about 3 days after every TCH treatment.  The kids never said a word, in fact, they never even mentioned the wig.  I can't wait to take it off for the summer,  

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

    BUNNY

    You are doing 12 taxol/herceptin PRIOR to A/C?? Did you say you still have A/C to go???

    I have never heard of it done that way.... I am interested in finding out why your doctors chose that.

    Most of us do A/C first.. 4 DD rounds.. THEN taxol/herceptin........... Do tell sister....

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  • ejlj
    ejlj Member Posts: 211
    edited June 2009

    I too had Herceptin/Taxolx12 weeks, but it was prior to surgery.  After surgery I followed with A/C X 4.  Now I'm back on Herceptin, but had to restart the year!!!!  I'm pretty comfortable with that though.  Tina

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  • cheers247
    cheers247 Member Posts: 270
    edited June 2009

    Joan 11847

    I was planning to work through chemo & herceptin, but it was not to be.  I have been so sickly and weak, it is not possible.  I'm a nurse and I hope to be back to work as soon as chemo is done, then be off again for surgury, then work during rad, and when my final year of herceptin starts.  Let me know how you do, I hope you feel well enough to work.  It is so different for everyone, there is really no way to tell.  Much Love, Jessica

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  • bwbly
    bwbly Member Posts: 82
    edited June 2009

    Estepp, don't know why onc chose this way. I think she feels it is better tolerated. I have to say, I have not had a lot of the Taxol SE's that I see many suffering with. Have only had very minor tingling in fingers and toes, no nausea (but I take my meds), very minor bowel disfunctions, tire easily and often but not what I would call fatigue .... no bone pain, no fingernail issues.

     Of course, the AC may just kick my a$$.

     One BC friend said that the drugs you finish with are the ones that really affect you. Ergo, Taxol last, most SE's ..... AC last, most SE's. Who knows? I guess we'll find out LOL.

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  • Lisa1970
    Lisa1970 Member Posts: 47
    edited June 2009

    Hi All,

     Had my 2nd tx (of 6) of TCH last thursday....And actually had a reaction! I got through the herceptin then they started the drip for T and within five minutes, I felt like I had a 100# sitting on my chest! They stopped the drip and started a drip for benadryl and I wait for a 1/2 hr. and they began the drip fo rthe T again, and everything went fine...Thank God! I slept through everything, again. Loosing more of my hair. Already sick of the wig! Fruit taste good, water, as usual, taste horrible...Food in general, is yucky. But, we must continue forward right women!!! :)  Every night, I treat myself with ice cream, it seems to settle my tummy and remove any icky taste(s) I have in my mouth.  I have TCH every three weeks with H every week.  I have been working, with no problem's. I work monday - friday 8am-4pm. I do have a desk job that does intail alot of running around. It help's keep my body and brain active.  I do alot of resting on the weekend's.  

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  • mamakaren
    mamakaren Member Posts: 225
    edited June 2009

    Hello gals,

    Well I guess another late night! I just can't seem to fall asleep early anymore. Tomorrow is my Birthday!!! The big 36 I will probably go to dinner or something like that but my real birthday starts this weekend in Rocky Point. I plan to have a great time and just relax thats all i want.

    Lisa~ I'm glad you made it through the treatment and I really hope you feel better. Work sure does make time go by and really distracts you from feeling depressed.

    Tina its so good to hear from you I hope you are doing good.

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

    Happy Birthday to you ........

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  • oldstudent
    oldstudent Member Posts: 61
    edited June 2009

    Hi, all. I'm on the bus! Later I'll post a great recipe for rum cake, but it is kind of long, so I need to do it later when I'm not supposed to be getting ready for work.

    Haven't started chemo yet, but PR/ER neg and HER2 +++ so will be getting Herceptin along with whatever else they decide.

    I appreciate all the info you ladies post. Talk to you again soon!

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  • Lisa1970
    Lisa1970 Member Posts: 47
    edited June 2009

    Happy Birthday MamaKaren! Hope you have YUMMY food and it all tastes great!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Hey ladies,  I've been posting in the "First chemo done" thread in the IDC forum...

    I finished my first TCH on Tuesday and so far... no side effects at all, except for the fact that food is unappetizing.  I'm not nauseated, and I don't feel tired.  

    How long did it take y'all to feel the side effects?  Am I about to get my butt kicked?  Or is this mild reaction pretty normal?  

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  • oldstudent
    oldstudent Member Posts: 61
    edited June 2009

    Rum Cake Recipe by Bertha Shostak, 1992.

    1-2 qts rum

    1 c. butter

    1 c. sugar

    2 large eggs

    1 c. dried fruit

    2t. baking powder

    1t. soda

    1/2 c. lemon juice

    2c. brown sugar

    Before you start, sample the rum to check for quality. Good, isn't it? Now go ahead. Select a large mixing bowl, measuring cup, etc. Check the rum again. It must be just right. Be sure the rum is of the highest quality, and then pour one level cup of rum into a glass and drink it as fast as you can. Repeat. With an electric mixer, beat one cup of butter in a large fluffy bowl. Add one seaspoon of sugar and beat again. Meanwhile, make sure that the rum is of the highest quality. Try another cup. Open the second quart if necessary. Add 2 arge leggs, 2 cups fried druit and beat until high. If fruit gets stuck in beaters, just pry it loose with a drewscriver. Sample the rum again, checking for tonscisticity. Next, sift 3 cups of pepper or salt (it doesn't really matter). Sample the rum again. Sift 1/2 pinjt of lemon juice. Fold in chopped butter and srtarined nuts. Add 1 babblespoon of brown thugar, or whatever color you can find. Wix mel. Grease the oven and turn cake pan to 350 gradees. Now put the whole mess into the cover and ake. Theck the rum again and bo to ged.

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  • MRSROCKYTOP55
    MRSROCKYTOP55 Member Posts: 403
    edited June 2009

    I think I will try that rum cake, how funny!  Loved it, thanks for the smile today.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited June 2009

    Laura I had my treatment on a Monday and the SE hit me the worst on Saturday.  Normally by Monday I would be functioning again but VERY slowly.  I hope you skip the SE and continue like you are now.  :)  Come join us in the TCH tread.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Thanks, Jamieh, I will!  I've been, er, queasy all day today... will jump over and say hi!  Hugs, L.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited June 2009

    Take something for being queasy ALWAYS stay on top of it.  Once you are behind it's hard to get ahead of it.  If your medicine that you have do not hesitate to tell you dr. that you want Emend which is awesome IMO.  I hope it goes away soon.

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  • joan11847
    joan11847 Member Posts: 13
    edited June 2009

    Hi all

    I go for my 1st treatment of TCH tomorrow.  I want to thank all of you for your remarks and info that has helped me to understand how it works.  Also, old student, thanks for the rum cake recipe.  It's one of my favorites and I hope it remains that after my treatment.  I bought 4 hats today, I just couldn't do the wig in the summer.  I'll let you know if I get any side effects.  By the way, is "se" short for side effects? and tx short for treatment?  I need to know the lingo.

    Joan 11847 

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  • joan11847
    joan11847 Member Posts: 13
    edited June 2009

    Hi ladies

    Had the 1st treatment yesterday (TCH) and felt a little hot after the herceptin but that's all.  I don't want to say that too loudy as not to jinx myself.  I woke up this morning with a sunburn (which they said might happen with fair skin like mine).  Has that happened to anyone else.  Started to take my nausea medicine before I felt any nausea (hopefully to ward it off).  Just 5 more TCH and then 13 H left.  

    Joan 11847 

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