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ER-, PR-, Her2+ Roll call

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  • nevo84
    nevo84 Member Posts: 55
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    Dear Annaanne you like Dottie are such a huge inspiration for all of us.Thank you for checking in after all this time (6 years) just to give us hope. We, the family of diagnosed ones have the same feeling as you so we too need inspirational stories. We are waiting for more comments in this thread. So lets go

  • sewingnut
    sewingnut Member Posts: 475
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    So glad to see this group, people like me.  When I saw the surgeon on my last post op visit he started to walk out the door and then walked back in and told me "Joann, from here on out it's a matter of attitude. You can feel sorry for yourself or you can fight." I choose to fight. When I saw my path report the first thing I said was Thank God I'm Her2+ there is a drug for that. Going for #4 TCH this thursday.

  • CarylC
    CarylC Member Posts: 30
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    I have just read all of your stories and am feeling so much more positive!  I haven't started chemo yet, start on the 20th, had bi-mx in March and was starting to have just a little pity party for myself after getting the print outs of the side effects from the onc (6 rounds of Taxotere and Carboplatin), Herceptin for a year then rads but now I'm feeling much more optimistic.

    Thank you all for sharing! 

  • nevo84
    nevo84 Member Posts: 55
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    Dear CarylC yesterday I thanked God a lot and the reason is seeing my mom recover day by day. I know that it's so shocking and hard for you and your family because you Dx very recently but I reassure you that everything will be great in very near future. My mom who was so hopeless and weak after the surgery and chemos first sessions now feels so good and I can say even great. She came back to life and we are all so thankful to God. Big HUGs to u

  • thegood5
    thegood5 Member Posts: 284
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    CaryIC~TCH totally knocked my cancer out of the park!  You may read some horror stories on here about what people went thru with their chemo, but don't take it to heart, everyone is different!  I am seeing 2 different oncologists and the one at U of Pa totally agreed with what my onc here put me on and said it is the hardest chemo cocktail to get with our type of cancer, and he couldn't believe how great I was doing on it and how good I looked. (meaning I was up and around and good skin color, energy...)  Don't get too discouraged if you are down and out for a few days after your tx, it does get better and before you know it, you will be done.  Went to see my onc yesterday and we couldn't believe I've been done with it since the end of Jan.  Just go into it knowing that Herceptin LOVES to melt away our Her2+!

  • Jaimieh
    Jaimieh Member Posts: 925
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    CarylC~ I made it thru TCH and you can also do it.  Everyone reacts differently to TCH just take it one day at a time. 

  • Survivorwoman
    Survivorwoman Member Posts: 70
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    Hi Ladies-- it is so great to read your stories! I am really happy that I found your board. I needed to hear some inspirational stories today, especially Dottie's and Anna's.

    I am one of those women who take Tykerb instead of getting Herceptin. I am in a clinical trial that investigates the benefits of Tykerb. I take 6 tablets daily and don't need to get injections every three weeks,  which makes Tykerb very easy to do and as such, it is hoped to be the new way to treat HER2+ women in the future. I certainly hope that it will work well for me and for others as well. A sidenote: I did the Taxotere/Carboplatin chemo and finished it in February. I lost a lot of weight, much like Dottie, during chemo. But I am also a food lover, so I am eating a lot since I can taste food again, but carefully watching what I eat. No more junk and certainly a lot less sugar.

    Thank you for having me in this group. I very much look forward to hearing more inspirational stories. Hugs to you all!

  • Lilah
    Lilah Member Posts: 2,631
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    Yeah I lost weight during chemo as well -- I think because it made everything taste bad so I just lost my appetite -- and then of course once the taste buds returned so did the weight :)  I'm back to what I weighed before chemo... which is, sadly, 20 pounds too much!

  • Survivorwoman
    Survivorwoman Member Posts: 70
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    Lilah-- yeah, I have to watch how much weight I put back on. I was thinking about that too today. So I quickly did some yoga and went for a walk, too.

  • bethanybeane
    bethanybeane Member Posts: 167
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    Sending hope and encouragement to you all --  Things are good -- I'm almost 3 years out from DX and 2 years out from Herceptin. Still on Arimidex and grateful to have it. Have had a few scares and another lumpectomy (negative)-- so far/so good and I'm almost convinced this is over. Even my ALT is almost normal again. Have started lifting weights to feel healthy and strong. Peace and progress. Bethany

  • mtndawn
    mtndawn Member Posts: 48
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    Hi all, I got deported yesterday!  Yay!  For those of you in the thick of TCH, hang in there.  While it isn't fun, it is over before long, then the herceptin alone seems to just fly by.  Then again, I had surgery, radiation and exchange surgery after chemo, so that may have taken my attention off the herceptin and made it seem to go by quickly.  

    Stay strong! 

  • stlcardsfan
    stlcardsfan Member Posts: 227
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    another one checking in.

    I guess since I was TCH first, and then surgery, my 1 year NED is approaching in June.

    Finished Herceptin 12/15/10. Still dealing with fingernail issues from it.

    Working on also losing the weight that Herceptin and ooph seems to have caused. Very slow going but it is coming off.

    Also working thru frozen shoulder - just love the PT for that.

    Due up for Brain MRI and  Bone Scan due to some issues I have recently starting having. Hoping for the best! 

  • dottie70
    dottie70 Member Posts: 14
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    Foot in mouthHang in there Survivorlady, before you know it, it will all seem just like a bad dream. My daughters and my support group of friends threw me a celebration party on my first year anniversary of being cancer free where at the end of our gathering we stood on the deck and everyone released pink balloons---my way of letting go and putting everything behind me. As my plastic surgeon told me "it's just a blimp in the radar" 
  • Lilah
    Lilah Member Posts: 2,631
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    StL -- hey!  We have a lot in common don't we?  I finished my Herceptin in September 2010, so just a little before you.  Had two lumpectomies, then chemo, then uni MX... sorta like you (I had a surgery sandwich I guess).  Sorry about the nail problems and best wishes for an uneventful / benign MRI and bone scan.

  • bertie03
    bertie03 Member Posts: 2
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    i am er/pr -  her2+ i have three more treatments to go so will finish herceptin in june at this stage all is looking good and once i finish treatment i will be out to 4 monthly visits i had no side effects from herceptin and breezed through chemo just a bit tired all in all wasnt as bad as i thought it would be it was 12 months since diagnosed in february 2011

  • stlcardsfan
    stlcardsfan Member Posts: 227
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    Did anyone develop vertigo after completing treatment?

    I was done in Dec 2010. Everything was fine. Then about mid to late Feb started getting these dizzy spells. Like the room was spinning. They would come and go. I would go a week with nothing, and then have them for a few days in a row. Also got a sore spot in my lower back on my right side. Could be because of the new chair I got at work but you all know where my mind drifted to.

    So, I went in to see my oncologist last week to go over everything. He firmly believes I have benign positional vertigo and a strained lower back. But to ease my mind, has ordered a Brain MRI and bone scan. I mean, I am not even 4 months out of Herceptin.....

    And to top it all off, my dog (9 year old German Shepherd) got sick and was throwing up a lot. Turns out her Gall bladder had burst. She had emergency surgery and is doing well. But it was a tense 3 days of worrying about her. Can you say STRESS!!

    I have my tests next Monday and Tuesday and met with Dr again on Wednesday to go over everything.

    Thanks for listening everyone. 

     Hey Lilah - I see you on the Vegas thread too - looking forward to meeting you! 

  • nevo84
    nevo84 Member Posts: 55
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    Dear Stlcardsfan

    I truely hope that everything will be ok with you. Just don't lose your hope and stay positive. We are looking forward to hear good news from you. Big HUGs to you.

  • rebzamy
    rebzamy Member Posts: 49
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    Hi all diagnosed June 2007 and started chemo in middle July which was joined halfway through with Herceptin. This June 2011 it'll be 4 years since diagnosis!

    Stlcardsfan - I can really relate to vertigo as I've suffered all types over the years, some is to do with my ears and some is to do with my neck having suffered whip lash many years ago. If I sleep at the wrong angle or on the wrong pillow it can trigger it off. I went on holiday last summer and slept terribly and had vertigo on and off for about 6 months and then miraculously one day I woke up and it had gone - hopefully it'll stay away now. Hoping all is ok for you

     xxx 

  • Lilah
    Lilah Member Posts: 2,631
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    StLCardsfan -- I too hope the tests show nothing serious.  And yeah!  Vegas here we come!  :)  I havve to say I have not been aware of vertigo... though I DID just last night notice that I was feeling a little dizzy and I could not figure out why.  When I think about it I have noticed very sporadically a small dizzy moment here and there so maybe it's do with the chemo.  I will do a better job now of taking note.  I take BP medicine so have usually attributed the feeling to a passing moment of low BP... but who knows?  The back pain could be arthritic; I know that since chemo/herceptin I have developed some arthritis that I never had before the TX.

  • stlcardsfan
    stlcardsfan Member Posts: 227
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    Thanks everyone for the feedback!! Vertigo is no fun. At least the medicine that they gave me seems to help when an episode happens. 

    As far as the tests - Bone scan done today, also had my 6 month check up with cardiologist and that went well too.

    Tomorrow is Brain MRI. That one is a 7am. Yikes.

    No vertigo this weekend - go figure. Wednesday I meet with Dr and get the test results.

    And, dog gets her staples out tomorrow. Yea!  She is doing great. And all the hair they had to shave off before surgery is growing back. It is no fair that her hair is growing faster than mine!! 

  • mtndawn
    mtndawn Member Posts: 48
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    stlcardsfan, it is reassuring that your onc isn't worried.  I do get some light-headedness from time to time.  I am on blood pressure meds, though, so I chalk it up to those.  Wednesday can't come soon enough.  We look forward to you posting back with good news!  I'm glad your dog is recovering well. 

  • nevo84
    nevo84 Member Posts: 55
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    Bump

  • Aussie-Sharon
    Aussie-Sharon Member Posts: 45
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    Hi All

    Guilty of not posting often, but just reading through the HER2 section. I was diagnosed in 2002, had Chemo, Radiotherapy and Herceptin on the HERA Trial 3 weekly for 12 months.

    After all these years my fingernails still have the ridges! But I can live with that. 

    I am coming up to my 9 year since diagnosis and going strong, so glad I got Herceptin:)

    All the best to all

    Sharon

  • Lilah
    Lilah Member Posts: 2,631
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    Sharon that is SO encouraging!  I find it interesting that you were given radiotherapy.  Did you have a lumpectomy or an MX?  My stats are similar to yours but once I had the MX (unilaterally) I was told I did not need radiation.  So I'm just curious.

  • Aussie-Sharon
    Aussie-Sharon Member Posts: 45
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    Hi Lilah

     I know it was all a bit of shock to me, I went into surgery expecting to have a mastecomy and immediate reconstruction and then off home to get on with my life.

    Once they did the pathology they found that I had an invasive HER2 positive cancer plus DCIS but margins were too close so I had to have the radiotherapy.

    It was 6 weeks away from home - I live 750km from the nearest treatment facility - but as I'm now nearly 9 years out I have to say it been worth it all:)

    Cheers Me

  • KitCat1
    KitCat1 Member Posts: 13
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    Great to hear that news  Aussie Sharon! hugs to all!~ XOX

    Cathy

  • Lilah
    Lilah Member Posts: 2,631
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    Sharon -- that makes complete sense.  I remember now I WAS told that if it's close to the chest they do radiotherapy anyway.  I too am glad you had it considering your 9 year surivival!  Wahoo!

  • nevo84
    nevo84 Member Posts: 55
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    Dear Aussie Sharon so glad to hear your story. It's so encouraging. Love those ladies who went through this long time ago but just check in for give us hope and you're one of them. We are all waiting for more inspiring stories.

  • stlcardsfan
    stlcardsfan Member Posts: 227
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    Aussie Sharon - thanks for posting your story. I so look forward to hearing some good stuff when I am come on these boards!!  9 Years - that is AWESOME!

    My good news -  Bone Scan and Brain MRI CLEAN!!!!!  So, according to DR - lower back sprain (probably from how I sit at work all day) and vertigo. I have made an appt with a ENT Dr for the vertigo - first avail is August 11th - yikes. But, all my info tells me this guy is really good.

    For the lower back - seems I need to start exercising and using my lower back muscles a little bit more than I have. DH pointed out in the office with DR present, we have a weight machine in basement and I am welcome to use them. Hint taken. I used to be so physically active before all this junk started. Goal is to get back to that physical level!! 

    Oncologist seems me again in 4 months - standard protocol. So thankful for good news!  

  • HollyinMich
    HollyinMich Member Posts: 57
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    Stlcardsfan - So glad to hear that everything was clean!!!  Lol, I am having a similar issue with my lower back as well.  5 months on the couch during chemo and another month after surgery didn't help to keep those muscles strong!  I found that using a yoga ball really helps with my back muscles and helps strengthen my core muscles too without putting a ton of stress on my lower back.  It's really great for streatching it out too!

    Found out today that I have to take a break from my Herceptin.  Since I started in October with the 12 weekly doses that coincided with my Taxol and then switched to every three weeks in January my EF dropped from 59% down to 49%. I've had shortness of breath that I had chalked up my allergies flairing up being Spring and all, guess I was wrong.  I'm having a repeat MUGA in a month to see how my heart is and the doc will make a decision from there whether or not to keep me on the Herceptin or switch me over to Tykerb.  Was kinda bummed over the news today, especially considering I have only had 4 of the every 3 week doses.  Seems so soon to be already experiencing heart problems from it and I'm only 34 which made me think I would sail through it a bit better, but I guess not.  Frown  Oh well, such is life, lol!