positive feedback

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2213
2213 Member Posts: 22
edited June 2014 in IBC (Inflammatory Breast Cancer)
positive feedback
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  • 2213
    2213 Member Posts: 22
    edited September 2010

    Hi there, i am writing this on behalf of a friend who is trying really hard to stay positive with all the gorey statistics out there.

    She has IBC stage 4. HER2+, ER-. she had 8 rounds of chemo,a mastectomy and removal of 8 lymph node this year followed by 5 weeks of radio.Now she continues on herceptin until end of year. She is really kean to hear from anyone else with same diagnoses( HER2+ ER-).i would absolutely love to give her some doing well stories to read. Thanks so much 2213

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  • 2213
    2213 Member Posts: 22
    edited September 2010

    Thanks for that bonnie i will tell her what you said about the herceptin, we are in Australia though and it is only funded for 12 months. There does not seem to be that many out there that our her2 + and ER -, Does that make a lot of difference to the long term survival rates do you think.

    Thakns 2213

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  • jezza
    jezza Member Posts: 698
    edited September 2010

    Hi ....maybe get in touch with the Aussie BC Forum and post there as well. I will PM you the link.

     Lots of helpful ladies there as well.

     Its great that you are helping your friend.

    jezza

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  • 2213
    2213 Member Posts: 22
    edited September 2010

    Thank you jezza, that would be great. 2213

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  • leisaparis
    leisaparis Member Posts: 587
    edited September 2010
    2213, Hi there. I'm not quite the same as your friend. I'm stage 3 not 4, and you can see the rest in my tag line. I had 12 weeks chemo, then another 12 weeks chemo, surgery (both breasts), 6 1/2 weeks radiation, and am on Herceptin for a year. It will end at the end of May 2011. How has your friend done so far? I've done pretty well. Didn't really get sick or anything. Mostely tired. Really worn out. Can't seem to get enough sleep. Worked most of the time. Only took off for the surgery. I work in a manufacturing plant on as assembly line, so always moving. You and/or she is more than welcome to ask me anything. I'm an open book. Tell her to hang in there. Good luck and God bless. Leisa
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  • 2213
    2213 Member Posts: 22
    edited September 2010

    Bonnie, thanks for links.

    Leisa, thanks so much for your feedback. My friend is doing really well, she didn't have an easy run, very sick weak dizzy etc etc. But she has been amazing and has got through it. Her main concerns now are really just dizziness all the time and headaches, not sure if it is all just recovery from treatment or side effect of herceptin which she gets every 3 weeks.Anyway thanks again for response, you might hear from me again soon love 2213

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  • leisaparis
    leisaparis Member Posts: 587
    edited September 2010

    My Herceptin is on a weekly basis.They wanted to put me on a 3 week rotation, but I get along real well with the weekly treatment and didn't want to chance getting sick. So I opted to continue with the weekly instead. Maybe your friend should see if it is a possibility to go to a weekly treatment instead, Maybe that would stop some of the dizziness and headaches. Don't know, just a suggestion. They always give me Tylonol before treatment and it helps. On a couple of occasions I didn't take it and I could tell the difference. So now I make sure I take it, and if they forget I remind them. (((HUGS)))  Leisa

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  • 2213
    2213 Member Posts: 22
    edited September 2010

    Hi Leisa, thanks for that i will tell her, i was on the phone to her this morning and she said it was nice to have someone with a similar diagnoses. she doesn't go on this website any more because even though it has great info and support some of the stories freak her out a bit. She is trying really hard with all the anti cancer foods, positive thinking and meditation etc. She did ask me to ask you if onc gave you a prognosis when you were diagnosed (feel free not to answer if you would rather not) her onc is great but just said THIS IS A CURATIVE PLAN. Thanks again for great tips 2213

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  • leisaparis
    leisaparis Member Posts: 587
    edited September 2010

    No, and I haven't gotten up the nerve to ask straight out either. I know the statistics with IBC, but just try to stay positive and concentrate on the long term. That's what I like about this sight. There are women on here who have made it 15-17 years with IBC, so I just think I will be one of those too. As long as I am getting along good, I probably won't ask either. If I start to feeling bad or have other problems, then I will ask. But until then I like living in my own little world of not knowing. This works for me. Sorry I couldn't help on that one. Leisa

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  • 2213
    2213 Member Posts: 22
    edited September 2010

    Thanks Leisa

     I think you have a great attitude, my friend is trying to do the same. She is trying very hard to stay positive and change her whole way of doing things.That is why she gets me to go on this website because like you she has tried to live in her own little world and so far that works for her, that way i can take back to her the inspirational stories. I have learnt so much from this all of this. But as a friend i just want to fix it all and make it better for her.

    You are truley amazing working thru all the treatment,well done.

    How do they decide in the states how long people stay on herceptin? does it all depend on your onc, it is all so different here.

    By the way my friend is happy if you need to ask me anthing, you have already been a great help. Thanks and have a good weekend 2213

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  • leisaparis
    leisaparis Member Posts: 587
    edited September 2010

    I'm not sure how they decide. I haven't asked. You said,"In the states". Where are you from? How is she doing? I'm still okay. Have a little lymphodema in my right hand. Have had it since surgery. It comes and goes, but mostely has stayed in the hand the whole time. Still have a little trouble with the muscles under my right arm. They don't want to stay streatched out. I'm finally getting some of the feeling back, so it hurts a little more than before. I talked to my onc. about seeing the plastic surgeon. Have an appointment for Nov. 9th. He's really busy so that's the first date available, unless they have a cancilation then they will call me. I really hope they call, cuz I would really like to get it done this year. I have already met my deductable this year. And we are switching insurance companies at the first of the year. Not sure how they will pay, or if it will change any co-pays and stuff like that. Guess that's just how it goes. Have a good weekend. Leisa

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  • 2213
    2213 Member Posts: 22
    edited September 2010

    Hi Leisa, sorry i have been refering to  myself as a number, call me Koo thats my nickname.

    She has been well just lots of dizziness, tiredness and headaches, does not seem to have any long term side effects from the Chemo, but then again she rarely complains and is really tough. No probs with lymphoedema at this stage which is amazing cos she has a toddler and an 8 year old.She worries a lot about it spreading, even though she is trying to get on with life etc etc i know it is always on her mind so obviously she has her good days and bad days, How about you? do you have good support?

    When did you finish chemo and radio

    We are in Queensland Australia and the health system is much different i think we are very very lucky here you can get all the treatment in public hospitals funded through your taxes, its called medicare? might be the same name, however  there is a great private system too. My friend has done a bit of both, so has still been out of pocket thousands of dollars. The chemo radiotherapy and herceptin has been free though. All sounds a little bit most difficult for you. Hope you get that cancellation date. Well must be off, bye bye

    Koo xx

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  • 2213
    2213 Member Posts: 22
    edited September 2010

    Hi Bonnie, yes i gave my friend all the info on the herceptin, she is going to mention it to her onc on her next visit. I am not sure if it an option here though as the health system is very different. she is gettin it thru the public system and even with private health cover unless your onc recommends it it would not be funded. not sure if you can opt to pay it for yourself.

    He is a very good onc and is always flying off around the world and her 2 is his passion so will see what he says on next visit. Thanks ill leep you posted on the outcome koo xxx

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  • 2213
    2213 Member Posts: 22
    edited October 2010

    Hi Bonnie just a bit of feedback for you, my friend mentioned to onc about herceptin being given for longer than one year. Here in Australia.herceptin is only given for one year unless it is in the metastatic stage. My friend seems happy with this she, is however on a trial for new drug once herceptin finishes ( don't know any details ) Thanks Koo 

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  • Shellusea
    Shellusea Member Posts: 55
    edited August 2013

    Hi 2213,

    Thought you may be interested - Jenny is from New Zealand, she's an IBC sister, your friend may want to look at her website:  http://getoutgertrude.wordpress.com/

    She also has a profile on Facebook.

    I'm stage 3, HER+ ER-PR-, finished my year of Herceptin (every 3 weeks) last September, waiting to enter the Neratinib trial soon, and doing great.

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