2009 Herceptin group

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  • ango74
    ango74 Member Posts: 255
    edited April 2009

    Well its been awhile since I've posted here. Thought I would stop in to say "Hi". big "Welcome" to all the newbies on the bus. Just started radiation on Monday, long road ahead.  But, I'm feeling great and my hair is starting to come back.

    Take care everybody!

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

    Can I jump in and come along? Just had my first TCH on 4/16 and will have the next one on 5/7. Am doing ok so far. It will be 6 TCH and then just Herceptin for the remainder of a year.

     I have lots of friend/family support but it is so different having people who REALLY understand. This site has become invaluable to me already.

    Thank you for your support & friendship in advance.

    Amy

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  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    Welcome Amy!

    Ango74- Glad to hear from you. Isn't it a wonderful feeling when you can see that little stub coming out? My hair is growing slow and it's very curly and thick and also salt n pepper! Glad your doing good.

    As for me i have been worried about the swine flu! It's just horrible.

    My mom is gonna have here port in tomorrow and of course she is nervous. She doesn't like to be put to sleep she has a fear of never waking up. I had a rib x-ray due to some pain can't really pin point it. I feel pain under my arm pit where the nodes were takin out and to this day my arm feels tender. I'm just a nervous wreck right now. Just hoping that it comes back ok. I haven't been on herceptin for 2 weeks already due to the low muga. I just keep gaining all this weight also. Does anyone have weight problems due to Herceptin???

    Hope everyone has a great evening! Lots of love...........................KarenWink

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

    Karen... I just wanted to let you know that I have pain in my armpit and my arm has hurt too, this whole time. I have no cancer.. all gone! It is from the surgery. I hope it goes away too... you will be fine!

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  • Lhall
    Lhall Member Posts: 51
    edited May 2009

    Hi everyone I'm new on this site and have a question. I was just at the Hospital because of the pain in my legs and the swelling. They thought I had a blood clot so they did a Doppler test and it came back fine. My onc. is saying it's from the Taxol and not the Herceptin, but I didn't have this till I received a full dose of Herceptin. My treatment was Taxol every week for 12 weeks with half dose of Herceptin.but my last treatment of Taxol they gave my a full dose of Herceptin so I'm not sure which one did it. I'm done with Taxol now. And I go for Herceptin every three weeks. And I'm not sure if I want to finish it if it is the Herceptin giving me the pain and swelling to me this is worse than chemo. Any input would be helpful. Thanks Lhall

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  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    Welcome Lhall~ I also felt swelling on my feet and hands with pain but i was taking taxotere with Herceptin in combination one time. I think it might have been the taxotere, I have been taking Herceptin alone and haven't felt any of that. Sometimes it takes awhile for the effects of the chemo to go away. From the start with Herceptin I felt pain all over my body and now i have been on it going on 8 months and don't feel anything that much. I hope that you dont stop taking Herceptin. Hope things get better for you. We are all here to support you on this crazy party bus!

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

    I do believe it is the Taxol still. It will take up to a year for all the SE of Taxol to be over...

    I did not have swelling during my 12 weeks of Taxol either.. but did after...This is what my oncologist told me  yesterday...good luck!

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  • Lhall
    Lhall Member Posts: 51
    edited May 2009

    Thank you for all your help I feel better after talking to  wonderful women like you. Lhall 

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  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Hi to all, My Onco. told me that no drinking through tx (treatment being TCH) for the 4-6 tx then while on the H (have to be on h for a full year), if I feel like it, I could....So that sux, cuz I have always been a drinker....I'll take a vodka & pink lemonade :)

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  • Lhall
    Lhall Member Posts: 51
    edited May 2009

    Hi Lisa

              My chemo nurses told me I could have a drink every no and again. They just said not the night before treatment or the day after. But my Dr. never said either way. So I don't know if this helps. Lhall

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  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    I am soooo scared for next thursday...I think I can hear my bones inside of me clattering away from my shaking!!!  Has anyone "not made it" from chemo?

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

    Lisa - your feelings will range all over the place, from confidence to terror and back again. I have been told that is normal, especially in the beginning when everything is so new.  I find that for me, when I am more tired, it is harder to keep the fear at bay. When I am rested and stronger, i feel more confident.  

    I had my second tx today. No problems at all - went smooth and easy and I feel fine so far.

    You will make it one day at a time. I know you will.

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  • Smile2006
    Smile2006 Member Posts: 155
    edited May 2009

    Lisa:  I was the biggest chicken ever!  I absolutely HATE needles and I made it through without a port!  YOU CAN DO THIS! 

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

    Lisa you will make it thru chemo it's normal to be scared of the unknown.  Once you do it once and realize that it isn't that bad you will be fine.  Just manage any SE you get one at a time and don't delay.  Did your doctor give you Ativan ??  It helps :)  kinda like a nice drink :)

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  • reader1
    reader1 Member Posts: 2
    edited May 2009

    My name is Susan and I just finished my last Herceptin.  I am feeling out of sorts now.  I don't have my security blanket.  My normally fab husband of 22 years doesn't understand.  He says "move on".  I have alot on my plate and this past year has been very difficult for me.  I lost a really close friend who needed a lung transplant and another darling friend moved away.  I am struggling.  My armpit and arm are giving me troubles like right after mastectomy because of a stretching cardio class I recently started and overdid.  Don't want to be a Debbie downer just wondering about the wide range of emotions going thru..............................

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  • BrandonMom
    BrandonMom Member Posts: 412
    edited May 2009

    I had more problems with the big dose of herceptin, to include pains in my feet/lower leg and hands/forearms.  Kind of like it feels when you hit your funny bone.  Shooting pain.  Onc shook his head.  I asked it if could be from the nerves healing from the taxol, and he kindly said maybe.  I'm due to get the next big dose of herceptin next week, but the onc is thinking of holding it with all the SE I have been having lately.

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  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    Lisa, I'm with smile2006 I also was a basket case and didn't think that i would survive chemo and with all the support and faith I have from this thread I made it!! I finished chemo in September and now doing Herceptin for another 5months or so. I know it feels as though you won't but you will. Keep one foot in front of the other always!

    Susan we are here for you all the time and together we will all team up and beat this beast! Keep your chin up girl.

    BrandonMom~ I also felt worse with the large dose but now i've been on the small dose every week and had been good. Until my EF went down so i've been off for about 2 weeks i think so i'm hoping it goes up.

    Darn that Vodka and Pink Lemonade sounds so yummy!! My doc said i could drink a drink or two just don't over do it.

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  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Jaimeh, I have no idea what the onco has called in for me. I will be picking them up this weekend. I know the cream for numbing (port get's placed on tuesday) and a steriod Decoden? Not sure of the name....When I go in for the 1st time, I am scared from hearing about the "flush"? I think it was called? Something about when they start a drip? And the crashes, after the steriod is outta your system....I am 38 yrs old, no human kids, two meows and I have a wonderful, supportive husband, too...And I work full time...That's another thing, any of you work full time? I was told that I have to work atleast 30 hrs aweek in order keep my insurance...

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

    Oh don't be scared of the "flush" :)  I smell it for a second and then it's done/gone and I don't feel it at all just a quick smell/taste (odd sensation).  Make sure you use your Emmla cream it's wonderful.  Decadron will keep you up and it gives me heartburn so I start Pepcid AC Saturday the day before I start decadron so I can keep ahead of the hb.  I have an unusual crash after the steriod and while it's not fun it could always be worse.  My doctor said my reaction is unusual to have a withdrawl like I have (I have an increased HR which leaves me winded feeling). 

    I don't work but I have 2 kids that I run all of the place and try to take care of.  I manage but I am not myself yet but I hope to be soon just in time for surgery :)

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

    Lisa - I was scared about the port too. When they access it, if you put the numbing cream over it an hour before, you don't feel ANY PAIN, just a little pressure when they take it in and out. I promise. They take a big syringe full of saline and push it through the port, which I will admit looked a little daunting but I turned my head away and didn't feel one sensation as it went through. They did it the first time and also yesterday when I had my second tx. Again,  not one sensation.  I think that is the 'flush' process.

    I waited till the 2-3-4 days to see if I would feel a crash when the steroids wore off and I never did feel anything with the first tx.  Will see how I feel this weekend, but so far so good. 

    I work from home, so that is easier. But I have some local friends here that worked through it full time. One said she took part of Thurs off to get her chemo, took off 1/2 of Friday to go get her shot (which you may or may not need - I don't get it), and then rested the weekend and went back on Mon.

    The other friend took chemo on Wed, was fine to work on Th and Fri, and then had her rest times on the weekend.

    Another lady I met recently told me that she DROVE HERSELF to chemo and then went straight to work from there, and every other day as well. She said she never missed a day of work and never missed a meal.  Don't think THAT is typical. But that's her experience.

     Also talk to your HR dep't about short term disabiilty and FMLA paperwork. My HR lady said to file them right away to get the wheels in motion in case they are needed. I admit, I never filed them. They are here in a big pile of papers somewhere. But that is something to ask about.

    So you are going to have to wait and see. You are young and strong and you should be ok.  

    Stay strong. We will get through this together.

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  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    Lisa~ I always get this spray that numbs the port area and i am ready to go with that. I tell them to spray it until it gets white and feels really cold. When they flush it i did used to taste and smell it but then again i always was eating a chocolate frosty from Wendy's so that killed the taste for me. Always try to eat something cold during your treatment it works for me. You will be fine.

    Hope everyone enjoys this "Happy Hottie Mother's Day" We really deserve it even if some gals don't have kids heck we all deserve a HOttie Mamma Margarita on the rocks!!

    Have a good one everyone.   Karen

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  • reader1
    reader1 Member Posts: 2
    edited May 2009

    Lisa - I work fulltime.  A very demanding job.  I only missed 2 1/2 days of work because of the chemo.  It isn't bad, you can do it.  After my 1st chemo, they adjusted my steriod and I was able to continue on without missing work.  Steriod downs are hard.  My family just knew that I would be emotional my 3rd day after chemo.  Hang in BE TOUGH, you can do this.  There are truly worse things.  Flush is a piece of cake, kinda a strange metalic taste in my mouth - no prob.  Take time after treatment and just sit and pet meows! 

    Thanks mamakaren - Happy Mom's Day to all

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  • Alaina
    Alaina Member Posts: 461
    edited May 2009

    Lisa, the saline flushes through your port can leave a nasty taste in your mouth, but as others have said, it's rather quick and temporary.  At my last treatment, I discovered Starlight Mints completely MASK that nasty taste and work really well!

    I am working through chemo, and my job has been really wonderful/flexible to let me work from home on days I need to.  

    Since having 2 of 6 treatments, what I'm finding is that if I have chemo on Friday...I really shouldn't be driving (steroids in and out of system) until that next Friday.  Some people can do it sooner, I just didn't feel that steady.  The Monday/Tuesday after chemo, I tried to work from home and just drove myself crazy.  That Wednesday/Thursday, I had a friend drive me to my commuter train and that worked out amazingly well!  I felt good enough to go INTO work, just not steady enough to drive.  Once at work, I was fine.  I took yesterday off because I had followup appointments and just needed to rest and enjoy the non-rainy weather!

    You WILL get through this!  I'm 1/3rd of the way there, and while there will always be unexpected things that crop up, the preparation these ladies here give you, and the immense support, that is half the battle!  Work in partnership with your doctors and never be afraid that you are complaining too much or too often!  They can't fix everything, but they can fix darn-near most things, and there is just never a reason to suffer while on chemo!

    Remember, YOU are the customer, and the product is your LIFE!  Live well!

    Alaina

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  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Happy Monday to you All,  Tomorrow I get my port. I am terrified. I don't know why. I have a defibulator! (my 3rd one) Just the whole thought of getting put under AGAIN and that chemo is just 2 days away!!! My husband and I cried yesterday...And it is takingeverything I have to not cry today...

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  • blondie45
    blondie45 Member Posts: 580
    edited May 2009

    Count me in also starting in July for the herceptin, having AC first x4 every 2 weeks, then Taxol and herceptin x 12 weeks.

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  • ejlj
    ejlj Member Posts: 211
    edited May 2009

    Haven't posted in awhile, but am glad to see this thread continues.  Lisa-I was so scared before I had my port put in but really the only part I felt was the IV in my arm.  Honest!!!!  

    I've noticed during my herceptin infusions, my chest gets this real heavy type feeling and a tad bit nausea feeling that is pretty intense and then tends to fade but lasts all day.  Anyone else?  What is that?  thanks,  Tina

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  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    tina~ Glad to hear from you. You know that i have the same problem, I can't seem to pinpoint what is making me feel like this. My chest feels tight and i feel as though i short of breath then i get a panic attack so i don't think it is the Herceptin cuz i have been off it for about 3 weeks and my echo showed nothing bad. I think maybe i'm overwhelmed with all this about my mom. Oncologist says it's not the Herceptin so I don't know what the heck is wrong! I just know that I feel so awful and feel alot of fear and anxiety.

    My mom had the chemo today and she did well. I had to leave for awhile and couldnt stop crying. It just broke my heart to see her fear in her eyes. It was like a child looking at me with desperation but can't talk. I gathered myself and went back in. It was so sad like a movie. I was being strong for her and she was being strong for me.

    Lisa~ I don't think the fear ever goes away. I'm stressing about getting my port out and I still have about 5 or 6 months to go. I guess the only way that we can live life is to learn to live with it and learn how to work with it. I'm so sick of being scared all the time and i'm trying to deal with it but it's very hard and haven't found my comfort zone yet but someday I will just as you will. I hope you feel better soon.

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  • cheers247
    cheers247 Member Posts: 270
    edited May 2009

    My second chemo & herceptin is 5/19 (next tuesday) I had a terrible reaction to the drugs and had to be inpatient for a while, so I too am terrified for the second round.  After two weeks I am finally feeling a little better, so I know that it is temporary.  I am amazed at all the strong and wonderful women on here, what a great place to come for support!  I am a nurse, and really not used to being on this side of the treatments.  My hair started falling out today, I'm 6mos away from a double mastecotmy & total hysterectomy.  It seems like most people have already had surgery, I think thats the difference with inflammatory breast cancer. 

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  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    cheers247~ glad you posted here. We have a great team and are here to support each other in anything that we come across and now we are here for you. So put your seat belt and enjoy the ride on our crazy party bus! I remember when my hair started falling out. The best thing to do is to shave it off. I didn't want to comb my hair just so it could stay in longer then I realized how much better it was when i shaved it. It's just to traumatizing to see it fall out in your hand. Just remember it will grow back. I look like a chia pet right now (lol) but i'm so glad that it is growing, slowly but surely.

    My mom did pretty well today with the chemo. I'm soooo thankful. The oncologist says her hair might not fall out so she is pretty glad. I had appt today and asked about my weight gain and they said to try weight watchers! I just can't control the weight and my clothes don't fit anymore.

    Hope everyone has a wonderful day tomorrow.

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  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Hello Everyone! I am back to work today from getting my post yesterday. Whew, just glad all the surgeries are done. 1st Lumpectomy (04/06) then the port (05/12). Tomorrow is the 1st day of Chemo. To all your girls out there stressing on getting a port, all the "veterans" are right, it's the anticipation of "surgery" and isn't that big of a deal. I know it's easy for me to say, because I am through it and now I know by doing it and going through it You all will be fine!!!   :)

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