Introduce Yourself

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JulieS
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Re:Introduce Yourself - Friday, October 30, 2009 7:22 PM
Hi and Welcome!!! Here are some links to different forums.  This can be confusing when you have never been on a board before.  You can respond to threads by clicking on the "reply" button and it will open a window for you, or if you just go to the bottom of the page there is a spot for "quick reply."  At the top of the page there is a place to click on "all forums" that will take you to a main page then you can click on each forum.  The first link I put in is to a sunberz 2 thread that our stage IV ladies have a loooong thread going.  They share parts of their lives, treatments and ect.
It is not a downer at all, I read it because these women give me so much hope and strength.   The second link is for the sound off forum, which is the most active and it is just what it says......we sound off, ask questions,  give advice, share our thoughts, give support....what ever! :-)


http://apps.komen.org/Forums/tt.aspx?forumid=60

http://apps.komen.org/Forums/tt.aspx?forumid=48

Hope this helps you to get going!!!!  Join in anytime, anywhere!
Hope and strength,
Julie S :-)
Bothell, WA
dx 5/07 IDC
lumpectomy 6/14/07 1.5cm
er/pr + Nodes negative
finished rads 9/13
Tamoxfen 9/07- 8/09
Arimidex 8/09-

Tricia Keegan
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Re:Introduce Yourself - Friday, October 30, 2009 8:00 PM
Kimo, Before you do anything click on the form above this which is the welcome forum. This is posted by komen and has many tips and advice for getting around the boards as well as tips on the abbreviations under everyone's name and reading your path report.
It sounds complicated but really is'nt and well worth the effort for the support you'll receive here:)

P.S...Here's the link- http://apps.komen.org/forums/tt.aspx?forumi
<message edited by Tricia Keegan on Friday, October 30, 2009 8:02 PM>
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Kimo
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Re:Introduce Yourself - Saturday, October 31, 2009 5:36 PM
Thank you guys for some help with this. I had my 21 year old daughter come show me some basics, but I still get lost. I made an attempt at a signature, but you all seem to know abreviations I'm unfamiliar with. I saw my doctor yesterday, and he took blood to look at tumor markers. Since I've been on Taxol, Carboplaten and Iexempra, and the pain is getting worse, he told me he is not optimistic. I'll know by Tuesday what the numbers are. He says I just may be done with all the Taxene drugs, which is a bummer because he'd told me if I could stay off them for a year, they might be effective again. I know if this fails the next drugs have worse side effects, but, hey what is the alternative. My 5 year old grandson gave me a wonderful picture of me, with lots of hearts, and the words, "Dear grama, you are the greatest grama in the whole world.I am sorry you are sick love cameron" A real struggle for him, I'm told. he gave it to me and said. "this is for, you know, (whisper) your hair problem" So hard not to laugh!
 
I'll go look at the Sound off section you all mentioned. Thank you.
From extreme NW corner of US in Wash. State
56 yr Grandmother and mother died of BC - no BRCA gene
4 kids 21-30, 2 boys 2 girls - 6 grandkids 
2002 b/c, 8 mo chemo & rad, femara till 1/2008 
"You should now be free of cancer"
3/2008 "sciatica" became
metastisized bone cancer
Radiation, Xeloda (bad se)
Zometa monthly
3/2009 12 wks taxol, carboplaten, avastin
 Avastin 6/09-9/09
9/2009 iexempra w/ avastin
11/2009-12/2009 doxil &

Tricia Keegan
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Re:Introduce Yourself - Saturday, October 31, 2009 8:25 PM
Kimo,

I replied to you on the advanced forum and hope you see it.
The taxanes are good but still carry their own side effects but there are lots more to choose from so hopefully you'll find a mix that works.
If you want to post your signature you'll find the explanations of abbreviations on the link above that I posted.
Looking forward to chatting with you more on the advanced forum and the sunbearz thread!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

everydaysagift
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Re:Introduce Yourself - Sunday, November 01, 2009 11:26 PM
Hi Kimo,
 
Thinking of you and wishing you well.  You're in the prayers of many.  Take care, Diane

SandieR
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Re:Introduce Yourself - Tuesday, November 03, 2009 3:03 PM
Hello everyone out there!
 
I am looking for a long time survivor group for discussions.  I am a 20 year survivor.  My cancer was diagnosed when I was just 41.  Now that I have retired I am reviewing my journals that I kept during my ordeal.  I am having health issues that I would like to know if they are "normal" for my age or could they possibly be related to the chemotherapy and radiation I underwent. I would also like to know if there is a support group of "older survivors" like myself that meets in my area of Northeast Florida.
Thank you everyone!   "It's another beautiful day in paradise!"
Sandie R.

maofnick
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Re:Introduce Yourself - Tuesday, November 03, 2009 6:44 PM
Hi,
    My name is Chris. My mom Nancy, who has alzeheimers disease, was recently diagnosed with stage 4 breast cancer. By the time we got the official diagnosis, it traveled too her lungs. Her thoracic surgeon told us last tuesday that she will not survive surgery. So her doctors decided not too remove any of her cancer. They told us too make her as comfortable as possible, and too let her enjoy the quality of the life she has left. I know that there are non invasive procedures that can be done such as laser surgery, but we won't know for a few more weeks weither she is eligible because of her age and condition.
     I have been my mothers caregiver for almost 2 years now because of the alzeheimers disease. I asked her primary care doctor why my mother kept getting sick too please examine her. From may until october my mom was sick with white cell infections in her blood, and we got no explaination from her doc. at all. It wasn't until I had her rushed too the hospital for food poisioning, that the tech who did that cat scan on her stomach, accidentally went up too far, and discovered the lumps on her left breast.
     I am not placing blame on anybody, because the cancer would have come weither it was discovered earlier or not. I am mad at her doctor however for not listening too my concerns. Maybe the ougtcome wouldn't be so grim if she had. 
       If anyone out there has any adivce or words of wisdom, I could sure use it right now. Because I really feel like I let her down, and I want too know what I can do too help her.
 
Thanks for letting me blab on
 
Chris  
       

RP66
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Re:Introduce Yourself - Tuesday, November 03, 2009 9:13 PM
Wow Chris, I am so sorry to hear about your Mom's diagnosis.  It must be so hard not to be angry with the dr who ignored your worries.  Please don't feel like you let her down.  She is lucky to have you.
I am glad you found this message board and hope you find comfort coming here.  There is a great group of ladies on here that might have some comforting words for you.
Rene'~OH
dx 10/06 @ 40 yrs old
stage IIIa/grade3, 7/10nodes+
er/pr+,her2+
a/c/t&herceptin
rbrst mast/hyst 3/07
33rads 6/07 Tried the AI's for 18 months & switched to Tamoxifen~much better for me! 
Bilateral Tram-flap 4/08 Revision-left 7/08 
New surgeon revisions: 5/09-8/09-8/10  
Dec 2010  Finally finished! 
cp:RenePetrovich

RP66
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Re:Introduce Yourself - Tuesday, November 03, 2009 9:16 PM
Hi Sandie, Congratulations on your 20 years!!!  That gives many of us great hope!  You might find more action on the Sound Off forum.  There is another long time survivor, Rena that might see your post there.  I hope your health issues are just "normal" ones!!
Rene'~OH
dx 10/06 @ 40 yrs old
stage IIIa/grade3, 7/10nodes+
er/pr+,her2+
a/c/t&herceptin
rbrst mast/hyst 3/07
33rads 6/07 Tried the AI's for 18 months & switched to Tamoxifen~much better for me! 
Bilateral Tram-flap 4/08 Revision-left 7/08 
New surgeon revisions: 5/09-8/09-8/10  
Dec 2010  Finally finished! 
cp:RenePetrovich

Jean Southward
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Re:Introduce Yourself - Wednesday, November 04, 2009 1:38 PM
Certainly by being the care giver for your mother you know what Alzheimers does to a person.  My mother also suffers from this awful disease.  Two years ago she fell and broke her hip which required surgery.  She didn't understand the pain, treatment nor the rehab.  It forced us to place her in a home.  She is still with us but her decline has been continual.  I guess my point here is that while I would not want my mother to suffer unduly, I also would not put her thru surgery or treatments that she does not understand.  Even if it meant losing her sooner.  I just remember all too well the panic in here eyes throughout all of this and there was not a thing we could say or do to comfort her.  At this stage of your mothers life, you know what is most important and that is to love her and give her some sense of dignity.  It is awful that the medical field has a tendency to ignore the voice of the family when the voice of the patient cannot be heard.  I am so sorry no one listened to you sooner.  I really hope you and your family can find some sense of peace with this.  I wish you the best!
Jean S

Hope is that thing with feathers that perches in the soul and sings the tune without words and never stops...at all.

Emily Dickinson

IDC Stage IIB Grade 3 BC DX on 2-10-09
HER2+++
ER/PR+ 90% 
2 of 6 Node Positive
Double Mastectomy 2-23-09
Completed Chemo TC 7-10
Herceptin until 3-20-10
Arimidex for 5 years Started 8-09 

Ann B.
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Re:Introduce Yourself - Wednesday, November 04, 2009 3:17 PM
Hi Sandie--I, too, am a 20 year survivor, this month.  I do not belong to any support groups except for Komen and I joined Komen about the time I had my recurrence--that was 7 years ago.  I count my survival from the date of my 1st diagnosis and both my diagnoses were in November.  I see my pcp every couple of months and my onc twice a year.  If you are not seeing an MD on a regular basis, now might be the time to see one and check about your health complaints.  Good luck.
                                                                              Ann B.
                                                                               
Ann B.
12/89--Lumptectomy of left breast for 2 sites of DCIS followed by radiation and 5 years of tamoxifen. ER/PR +
12/2002--Mastectomy of Left breast for recurrence. Nodes negative. ER/PR+ Her2-. Arimidex.

everydaysagift
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Re:Introduce Yourself - Thursday, November 05, 2009 12:35 AM
Hi Chris,
I'm so sorry to hear of your mom's diagnosis and declining health.  A care taker's experience when a loved one has a long term illness is exhausting, frustrating, scary, immeasurably stressful and that only scratches the surface.  Re: less invasive treatment, "Google" offers many options when you experiment with the keyword language and keep it simple.  The social worker at your area hospital can be a good resource for support services in your area.  I'm sure your mom's personal comfort is your primary concern.  The two years you've shared through her changing illness is a gift, even if her level of awareness doesn't allow her to recognize it.  Remind yourself each day, you're doing the best you know how.  That's all anyone can hope for.  Remember to take a break now and then to recharge your batteries.  I hope memories of happier times help you through the days to come and I'm sorry for your trouble.  Know that your family is in the prayers of many across the country.  We're thinking of you and your family, take care, Diane  

mwd
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Re:Introduce Yourself - Thursday, November 05, 2009 8:25 PM
Hi Im new
<message edited by mwd on Friday, November 06, 2009 1:47 AM>

Tricia Keegan
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Re:Introduce Yourself - Friday, November 06, 2009 3:45 PM
Hi MWD,

Welcome but I'm sorry you've had to join us but hope we can help support you through this. I'd have been lost without the ladies here during my own diagnosis and still rely on them for support when things are bad.
If you start a new thread telling us a little of your diagnosis we can get to know you better and maybe answer any questions you may have:)
Good luck and remember this is treatable and do able, you can do it!!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

everydaysagift
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To: Hi I'm new - Friday, November 06, 2009 11:56 PM
Hi mwd,
Glad you stopped by, though we wish you had no reason to visit.....I'm new, too.  There's a wealth of information, insight, experience, comraderie, uplifting stories, and unending support here.  And an opportunity to connect with some of the most extraordinary, amazing, funny and courageous women on the planet.  When you're ready, we'd like to know more about you.  I wish you well and I'm sending good karma your way.  Sharing spirits await your return.
 
Take care........and have a happy........Diane
<message edited by everydaysagift on Friday, November 06, 2009 11:58 PM>

dawnmarie
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Re:Introduce Yourself - Saturday, November 07, 2009 11:41 AM
Hi...I'm new here and very scared. I found a lump in July of this year over my left breast and had lumpectomy done 10/26/09. Followed up with surgeon on 11/5/09 were I was told grim news of cancerous cells in margin even though he went back in and removed more during surgery. He says it is on the muscle wall and I have also developed lump on my right breast as well. He recommends double masectomy at this point and possibly followed by chemo if the margins are not clear after removal of both breasts. Removal of my double D breasts scares me to death but I know it has to be done. My question is what do I need to do to prepare myself after sugery? I am a 50 year old single woman and asked him how long I would be off work...he tells me approx. one week. What supplies do I need?

lymphdema5
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Re:Introduce Yourself - Saturday, November 07, 2009 11:58 AM
Hi my name is marie i am new here dx 2004 with well differentiated infiltrating ductual caricinoma 2.1cm 1/18 nodes positive axilla dissection estrogen+progestrone-Her-2- neu 1+ not overly expressed, S-7.14% Tumor grade 1/111 modified blook richardson score 4/9 nuclear grade 2/3 architecture 1/3 mitoses 1/3 microcalifcations identified in benign and malignant components. no lymphovasular invasive, invasive and in situ components 0.4 Cm from superior margin and 0.8Cm margins of resection. T2N1aMX surgery, chemotherapy, radiation, hormone therapy(arimdex)(one month only) history i went into early menopause at 37 had more then hot flashes so after natural remedies were exhausted i choose to take estrogen and progestrone (prempo) premian 8 years prior i quit taking these the day ofter i was dx i was feeding my cancer no more i did not have family history i was in good health i did drink more diet coke then water that has changed. I was only 47 in 04 now i am 52 So five years I am happy to say I understand 98% of all medical language i know that everywomen has their own cancer no ones is the same so when i couldn't take the arimdex it doesn't mean that i suggest others to stop remember i have only one positive factor, in closing today i have lymphedema and still take five different prescription medications and have not returned to work full time unpredictable swelling pain and meds really effect daily lifes and work styles i am happy to discuss any infor with anyone who asks 

lymphdema5
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Re:Introduce Yourself - Saturday, November 07, 2009 12:28 PM
Dawn I had double D's as well and are single I would like to help you prepare however your information is lacking in details, did they say anything about testing your lymphnodes? Please ask the surgeon what are the complications of axilla dissection if needed, and radiation after? Chemotherapy even if this is once a week for four weeks depending on your cancer, often women need a day to rest after treatment. Please find someone to drive you you will also need to fill out a form stating who you want to make medical decisions for you, I did not have family here. If you need someone to help you call hospital or someone on this site could lead you into patient advocate person at your location. Don't know what kind of insurance you have, it's good to know exactly what they cover up front. It is hard for single person to go threw however you are not alone I am here and all these other women will aways be here for you.
 

dawnmarie
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Re:Introduce Yourself - Saturday, November 07, 2009 12:34 PM
Thank you Marie. I do have a 30 yr old son, 75 yr old father close by and a dear friend that will be taking me to hospital for surgery. At this point all I have is my pathology report from my lumpectomy. Size of tumor 1.8 x 1.5 x 1.0 surgical margins involved by carcinoma extending to resection margin. ER, PR & HER-2 all negative. lymphoid tissue noted with the tumor, suggests the lymphoid tissue reaction to the tumor. there is no distimct capsule identified. I will be going back in this week to see surgeon before surgery...not sure of all questions I need to ask. I did ask about radiation and he just said no at this point.

dawnmarie
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Re:Introduce Yourself - Saturday, November 07, 2009 12:43 PM
forgot to mention I do have medical insurance - Blue shield HMO that will pay for surgery. I have to pay 50% of surgery up to $ 3500.00 which I am prepared for and it does say in my book that they will cover reconstructive surgery but my surgeon advises against this at this point until we see if margins are clear after surgery.

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