Stage iv?? This thread is for you!

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pirate
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Re:Stage iv?? This thread is for you! - Monday, July 01, 2013 9:48 PM
Hi.. my mom has stage IV.. its moved to her lungs & lymphnodes. She has been fighting since 1995ish.. Surviving 3-4x of cancer. Last diagnosed in 2007, after being 6 years in remission. She is 51 years old. I am 25 in a week. We have been fighting this fight since I was around 7 years old. SHES A TROOPER! Look how far shes made it! But now, im getting older & im needing help.. with paying for prescriptions, having someone come to the house & clean. As HER mother, has throat cancer (survivor of Lung & Cervical, herself) and I take her to radiation daily.. My moms chemo weekly.. Its HARD. I'm here to find some social worker/advocacy info.. ALSO to support you wonderful women like my mother.

Leah1907
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Re:Stage iv?? This thread is for you! - Tuesday, July 02, 2013 4:48 PM
Hi pirate - Sounds like you truly have your hands full.  You're a fantastic daughter for taking care of mom and gma as you have been.  As their caregiver, you do need to also take care of yourself.  One resource you could look into is the American Cancer Society (ACS).  From my own personal experience, they provide drivers/transportation/gas cards to help with the treatment schedule.  They also provide various other services.  Most likely the social worker/patient advocate/nurse navigator (or whatever they may call it in your area) would be able to point you in the correct direction.  I was given info from the ACS when I was diagnosed ~ it was part of the Patient Care Guide I received.

Good luck to everyone,
Leah
Leah - Wisconsin
2/8/13 DCIS in left breast, ER+ PR+
3/11/13 skin and nipple sparing mast of left breast with expander
5/9/13 expander replaced with saline implant
5/28/13-7/5/13 radiation 
11/26/13 augmentation of the right, healthy breast with implant
12/2/13 LCIS in right, "healthy" breast
2/5/14 skin and nipple sparing mast of right breast with final implant

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Tuesday, July 02, 2013 5:20 PM
Hi Pirate and I'm glad Leah could make a suggestion to you, I'd also suggest calling your local Komen office and the Livestrong organization too for advice. I'm sure the social worker in your Mums hospital could advise her best too on what her entitlements are.

I'm sorry this disease has affected your family to such an extent, you all sound like strong determined women but there are times we all need a little help and I think its wise of you to search this out.:)
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

youngg
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Re:Stage iv?? This thread is for you! - Monday, October 14, 2013 9:00 AM
Hi Linda_Lee,

I, too, am looking for hope. I was first diagnosed with breast cancer at 39 years old and received the Stage IV news last September. I am now 50. I see all this "awareness" talk around me and wonder if anyone realizes how hard it is to hear them chat about prevention when what I really want is for someone to talk about a cure. I'm so very sure that I sound terribly selfish, but I want to live to become old - to watch my niece get married and have children of her own, to actually see what this retirement thing is all about ...

youngg
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Re:Stage iv?? This thread is for you! - Monday, October 14, 2013 9:03 AM
Are you still out there? I need to find a connection, too.

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Monday, October 14, 2013 12:25 PM
Hi Young,

I'm so sorry for your dx and I'm sure it must be even harder to deal with this time of year, this thread was very active at one point but has become quiet (maybe a good thing?) but I hope someone who can relate will reply to you soon, you can also send a private message to anyone by simply hovering your cursor over their Avatar and you should get a drop down menu giving you that option. 

You can also get a lot of info on www.breastcancer.org

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

suz777
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Re:Stage iv?? This thread is for you! - Wednesday, January 01, 2014 10:14 AM
My apologies that I am not very active on this site. However, I have more hope now than ever. First diagnosed stage 1 lump in 2006; 2 years later: stage IV bone mets, where I was frankly told I had a 20% chance of surviving 10 years. With yet another mets recurrence about 1.5 years later in 2010, the picture looked grim. However, at that point..May 2010, my medicine changed to a monthly Faslodex shot (estrogen downgrade regulator). I also took up the sport of dragon boating...I joined a breast cancer survivor team. Since then, I have had NO new recurrence and we have beaten back most of the mets! Nothing shows as a tumor/lesion anymore on my imaging...but possible 'activity' etc... There IS hope. My oncologist said she sees no reason why I wouldnt have as good a prognosis as her other long term mets patients...some survive 20 years....and she seems to have high hopes for me! I am working full time still and have monthly cancer maintenance appointments. I have no explanation as to why I have been granted more time and why some medicine is working for me that didnt for others. But I am so grateful to God and it was the best Christmas present ever this year to receive that news from my oncologist. I am still overweight, but eat lots of veggies, take vitamins, and do try to maintain some level of activity (along with fighting my thyroid issues). I wish an improved 2014 for you all! Suzanne
10/3/6 DX 1.1cm IDC +DCIS
Lumpectomy 10/26/6; SNB clear; ER/PR+; HER2neu-
Radiation/Mammosite 11/6-11/10/6
Alternative IV vitamin C infusions for over 1 yr
10/22/8-Bone mets to spine/sacrum@L5/S1&2,  fracture S1&S2
22 rads 11/24-12/24/8; 4 T/C chemo 1/22/9-3/26/9
BRCA1&2 neg
Monthly Zometa started 4/30/9
Femara 5/15/9; OOPH 6/26/09
5/2010: 12+ new spinal mets; swapped F

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Wednesday, January 01, 2014 11:18 AM
Suzanne its wonderful to know you're doing so well and I'm sure your post will be inspiring to many others reading this:)
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

Skye
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Re:Stage iv?? This thread is for you! - Sunday, January 05, 2014 8:11 PM
Suzanne, 

Your post was a wonderful bit of news.  I'm so glad to hear you are doing well.  


 Mid-Michigan; Diagnosed by first mammogram Aug 2006 at age 41; Bilateral Mastectomy 9-27-06; IDC, Stage II, Grade III; Numerous areas of DCIS; lymph Nodes negative; Chemo: (CAF) 11/06-2/07; Arimidex and Lupron, 2007-2012. 

ElaineQW
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Re:Stage iv?? This thread is for you! - Monday, January 06, 2014 7:44 AM
Happy New Year Suzanne!  So good to see you post and your news.  Keep it going!!

Hug
Elaine
 A person's greatness is the power to stand alone;to be able to make her own choice; in action,to write anew her own law; to choose her own sacrifices; run her own dangers; win her own freedom; venture her own destruction; to choose her own happiness 
 






Tricia Keegan
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Re:Stage iv?? This thread is for you! - Monday, January 06, 2014 12:48 PM
Karen, Suzanne is on my FB friend list if you want to send her a request unless you have her listed already.
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

suz777
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Re:Stage iv?? This thread is for you! - Monday, January 13, 2014 10:21 PM
Pirate...how is your mom??? Youngg...I see you are from Portland...they have a very strong dragon boat team there...BC survivors. Where is your stage IV? bone mets or somewhere else? Suzanne

DJ64
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Re:Stage iv?? This thread is for you! - Saturday, January 25, 2014 12:57 PM
Hi Suzanne,

I'm still around and happy to see you are still involved with the dragon boat team.  I know Tricia explained it but once again I've forgotten, now I can pretend it's chemo brain.

I am on chemo will be a year at the end of February that I've been on Taxol.  Had some bumps on the road but they are fixed.

My last scan was stable which was on 12/31/13.  However, the visiting oncologist thinks the pain I am experiencing is spread of more bone.  I have rib involvement near the lungs but this one is further to the side.  The ct scan might not have picked up on that area.  When he touched it "Ouch!".  I want to stay on Taxol as the devil you know is better than the one you don't.

I was pleased to see your name on the board.

Best to you,

DJ
"Prepared for the worst, hope for the best and, live each day to the hilt"


Stage IV  lungs, lining, ribs, left scapula and left clavicle - Used all the hormonal drugs - tamoxifen, arimidex,  , Faslodex 250 mg,  femara, , drug break using own estrogen (progression in 7 months), rebooted femara (progression on next scan) Faslodex 500 mg ended 18 1/2 years on hormonal therapies - 2013,  Taxol - 2014 now on Doxil. 

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Saturday, January 25, 2014 7:43 PM
DJ, Hoping and praying for no more regression, I think you've had your fair share!! The dragon boats are bc survivors who take part in rowing these boats in competitions and I know Suzz has loved being a part of it and I notice a team just put together in Dublin, not sure I have the energy lol!!:) Please keep us posted!
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

DJ64
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Re:Stage iv?? This thread is for you! - Tuesday, January 28, 2014 3:02 PM
Tricia,

The ct scan was stable but when the oncologist touched where it was hurting, it hurt a lot.  My oncologist was on vacation, this one was filling in.  He said, it could be that it spread to the bones further down or the bones are irritating the pleura.  I will see my own oncologist in a couple of weeks.  No sense getting upset for what may or may not be anything.  He wasn't going to do anything at first when I mentioned the pain but when I said, it happens in bed when I am not doing anything at all to aggravate it.  Time will tell.

DJ
"Prepared for the worst, hope for the best and, live each day to the hilt"


Stage IV  lungs, lining, ribs, left scapula and left clavicle - Used all the hormonal drugs - tamoxifen, arimidex,  , Faslodex 250 mg,  femara, , drug break using own estrogen (progression in 7 months), rebooted femara (progression on next scan) Faslodex 500 mg ended 18 1/2 years on hormonal therapies - 2013,  Taxol - 2014 now on Doxil. 

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Tuesday, January 28, 2014 6:27 PM
I'm sorry to read you have this pain DJ and hoping its something easily treated, perhaps bruised ribs from rads or some other non related issue, I'll be thinking of you and agree, no point in worrying until there's a reason and hoping there is NO reason! xx
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

suz777
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Re:Stage iv?? This thread is for you! - Wednesday, February 19, 2014 4:59 AM
Hi, DJ...how are you doing? Have you had a chance to see your own oncologist yet??? I had my annual mammogram and for the first time since I got cancer in 2006, I got called back for additional views. They marked the 'probably benign' box but said to come in 6 months for a recheck. Said it looks like benign calcifications at original lumpectomy site, but lets check in 6 months to be sure. Meanwhile, I'll try to remain positive and go back sooner if I have pain there (which I dont). I still see my oncologist monthly and I'm sure she'll send me sooner for imaging if needed. If anyone's interested, here's a little primer on dragon boating: http://en.wikipedia.org/wiki/Breast_cancer_survivors'_dragon_boating Here's the link to the international competition coming up in Sarasota FL this Oct...even if you are not on a team, you can register as an individual and join a 'composite' team: http://www.sarasotabcs2014festival.org/ Suzanne

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Wednesday, February 19, 2014 2:22 PM
Thanks for the link Suzz and I'm glad you're still enjoying the dragon boat racing, I think its very common for scarring after surgery and rads to give us all some worry at one point or another and recall the same thing happening to me, holding good thoughts for you.
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

Kaityf
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Re:Stage iv?? This thread is for you! - Wednesday, March 12, 2014 1:44 AM
Hi everyone. I'm a cancer noobie. I was just diagnosed a couple of weeks ago with breast cancer. The doctor ordered a PET scan and a bone scan and last week I got the word that while there was no soft tissue involvement, the cancer had spread to the bones in my neck and my shoulder.

The cancer is ER+ and PR+. And if I remember and understand it correctly, HER-. The doctor interpreted it all for me to mean I have the "good" kind of cancer.

I'm still learning about all this stuff. When I asked the doctor (and pulled it out of him), he said my prognosis is 2-8 years. However, I'm finding that Stage IV breast cancer is being treated more these days like a chronic disease rather than a terminal one. The life expectancies are based on old data. That doesn't mean I think I'll live for 10 or more years. It could still be just two.

Once the cancer was discovered in the bones, the treatment plan changed. I was going to have two chemo treatments, surgery, and then two more. Now, I'm going to get the 4 chemo treatments without the surgery, one treatment every three weeks.

I had my first treatment today. I talked to the doctor for a short time before the treatment, but I never seem to remember everything I want to ask -- or I learn later of things that I should ask him.

I know I will be getting other medicines/therapies, but I don't know at this point what they are. I see the doctor again in two weeks and I want to be prepared with questions to ask. I did ask about radiation and the doctor said I could get spot radiation on the bone cancer to alleviate any pain I'm having. I also know that I will be getting medication to help with bone weakness.

Btw, I'm 67 years old, never had any kind of cancer, rarely got sick, and aside from the killer cancer, I'm in excellent health!

If anyone has any questions I should ask the doctor, please let me know.
<message edited by Kaityf on Wednesday, March 12, 2014 1:46 AM>

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Wednesday, March 12, 2014 6:06 AM
Hi Kaity,

It sounds like you're understanding all this very well indeed and I fully agree with you that cancer is treated more as an ongoing chronic disease these days than a terminal one.  I think too that mets to the bones are the easiest to treat and I've known women have a great quality of life and survive for many years, its also possible with a good response to chemo to shrink the spots right down too, you sound very positive which is always a good start.:)

I really can't think of any other questions for you to ask your Dr as you seem to have it covered so will wish you lots of luck and do please keep us posted and if you research stick to reputable sites like here and www.breastcancer.org 
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

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