Stage iv?? This thread is for you!

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Kaityf
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Re:Stage iv?? This thread is for you! - Wednesday, March 12, 2014 9:06 PM
Thanks, Tricia. I am trying. I did find breastcancer.org, and posted on the Stage IV forum there. I learned some things, but I was getting a little uncomfortable because some people were telling me not to trust my doctor, but get second opinions. I was also told that chemo isn't the best option for Stage IV bone mets. I started thinking everything being done for me was wrong.

I found this forum and thought maybe I should get some second opinions here! Lol. Yes, I have a positive attitude. My philosophy is to worry about only what you know and can do something about. I didn't worry about mets until I knew I had it. Now I don't worry about what it will do to me because there is nothing I can do to get rid of it. I just want the best plan of attack because that IS something I can do something about.

I don't ask "Why me?" I answer that question with "Why not me?" We all have to die sometime from something. As I said, though, I'm 67 and have had a good life. I am sure I would have a much, much different reaction if I were young just starting out in life and/or I had small children. My heart goes out to women in that situation.

I also approach life with humor. Without it, life is so much harder. Laughter is the best medicine, they say, and I love to laugh. When I first was diagnosed with breast cancer, some of my friends didn't like my jokes. They were concerned for me, which I appreciate, but I wanted them to laugh with me.

When I told my 24-year-old son that I had breast cancer that had spread to my lungs, I could see from his face that he didn't know how to react. I could see that he was upset, but I could see a flash of anger. He didn't know what to say. So I told him that I was making jokes that my friends didn't seem to appreciate. My son and I have the exact same sense of humor. After a bit, he said, "Wait...your cancer spread to your bones?" I said, "Yes." He said, "And the doctors don't find that humerus?"

I thought that was hilarious. The cancer is in my shoulder and neck, not my arm, but it was still funny. And it helped my son know that it was okay and that he could talk to me about it without feeling uncomfortable or stressed out.

DJ64
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Re:Stage iv?? This thread is for you! - Tuesday, March 18, 2014 3:19 PM
Hi,

I'm 67 yrs young with mets to ribs, both lungs and pleura (lining around the lungs)  I was dx in 1994, my recurrence in the axilla while on Tamoxifen was in 1999 and the ribs 2001, I went on Arimidex.  In 2008, it was found in lungs and pleura and went on Faslodex 250 mg (1 shot) then Femera (3 years) Faslodex 500 mg 1 year and been on Taxol for 1 year having run out of hormonal therapy.  I still have Aromasin but it is do close to Femera and my oncologist thought the cancer knew how to stop the hormonal drug therapy.   Hope that helps.

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. 

Kaityf
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Re:Stage iv?? This thread is for you! - Wednesday, March 19, 2014 2:20 PM
Hi DJ. You have been fighting this disease for a long time. I'm glad to see you are still kicking. I hope I manage to keep going as long as you have. I'd like to see my son graduate from college, get a job, get married, and be settled before I go. But I'm happy that I got to see him grow up.

I'm actually amazed at the progress we've made in treating cancer. Now if only we could just cure the monster! I imagine I'm going to be learning a lot about all these different drugs in the next few years.

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Wednesday, March 19, 2014 4:04 PM
So true Kaity and I'm guessing you'll become an expert like most of us over the following months!!:)  On a positive note though you do meet some amazing people by having this disease and I'm thankful cancer has at least given me a few very close friends I never otherwise would have met.
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

jeanmac
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Re:Stage iv?? This thread is for you! - Sunday, April 13, 2014 4:16 PM
Dear Michele I am new to this forum, joined about a month ago. I am newly diagnosed in Feb 2014, and it was just confirmed I am already stage 4, bone mets to spine. I am not sure how uncommon this is, to be stage 4 at diagnosis. My tumor was triple positive, lumpectomy had clear margins, and no positive lymph nodes! How can I be stage 4? An aggressive grade, grade 3. I need support, I am still processing all of this. this website is so supportive, I already love you Trish! Each time I feel the anxiety bubbling up, I come here and get some hope. I will begin treatment next week, after trying to get a 2nd opinion about treatment, and learning if there is a clinical trial out there for me. I would love support from you, Michele and anyone else out there who is stage 4! As I progress on my journey, I will try to offer any support I can, as well. I think this week I will seek some counseling, my emotional health really needs some TLC. thanks to all of you out there! Love, Jean

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Sunday, April 13, 2014 4:26 PM
Jean thank you, love you too and would love to help if possible, do check the link on the other thread you posted as I replied to you there. I'M sure we can all help you though this and with a good response you'll be passing on advice to others before you know it:) It sounds like you are getting the best treatment for your dx to me, hang in there and know there are many here to support and help you and you're not alone.

Please feel free too to send me a pm although you need to allow for the time difference if I don't reply quickly, holding good thoughts for you!!  (((hugs))))
<message edited by Tricia Keegan on Sunday, April 13, 2014 4:29 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

AZGal
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Re:Stage iv?? This thread is for you! - Saturday, May 03, 2014 2:02 PM
Well, here I am.  It's hard to believe that I'm Stage IV.  My lobular carcinoma has progressed into the dermis of my skin and now, I have malignant pleural effusion.  I think I'm still a little stunned.  Don't know what to think. Thank heavens, I don't feel particularly bad right now...a little fatigued but that seems to be a common side effect of the chemo I'm on.   Hoping that it will stop this in it's tracks.  
  
<message edited by AZGal on Saturday, May 03, 2014 2:07 PM>
Shirley age 67, AZ
Lt idc lumpectomy, chemo & radiation 2003
ER+, Tamoxifen
Rt ilc, ER+ 09/26/08
BM 10/30/08 w/reconstruction
No chemo, no rad, Femara
Recurrence Rt breast, surgery 09/21/2011
Chemo, radiation, Faslodex
Recurrence Rt breast, surgery 05/30/2012
Recurrence Rt Breast, Latissimus Flap 10/2012
rad. Dec 2012, Aromasin
Recurrence May 2013, chemo Taxotere,
Oct 2013 Gemzar, Alleric reaction, Apr 2014 Afinator
Apr 2014 Mali

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Saturday, May 03, 2014 5:30 PM
Oh Shirley I really am sorry for this recurrance and you've been through a lot already, I of course remember you posting in the past and sad you're back with this sad news. 

On a positive note its good to know you're well apart from the fatigue which I suffered from a lot too, all you can do is listen to your body and rest as often as you need to. What chemo are you on??  I assume they've tested the mets to see if the her2 or hormone status has changed at all??

I'm sorry this forum (and the message boards) are fairly quiet these days which is probably a good thing I suppose, if you don't get many replies here do post on sound off and check www.breastcancer.org if researching, sending good wishes and I hope you'll 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

GodsGirl
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Re:Stage iv?? This thread is for you! - Sunday, May 04, 2014 6:05 PM
Just wanted to say hello and wish you the best of luck and health.  I too had no health issues, worked out regularly, ate very carefully and even quit smoking.  Both sides of my family have heart disease, high blood pressure, diabetes and high cholesterol.  I was expecting to get one of these eventually but have been blessed not to.  Needless to say when I was diagnosed with stage 4 breast to bone I was in disbelief.  Funny thing is I never had a moment of breaking down and it has been 5 months.  I have a strong relationship with the Lord but I am sure that eventually all of this will hit me as real.  My pain is everywhere and constant but I press on because I feel blessed to have time and an excellent Oncologist Dr. William McNulty.  If I can be an ear for you please let me know.  BTW I just turned 51, have 2 grown sons and an awesome granddaughter with whom I am very close and would like to see her grow up and get married.  She is 15 and is very involved with my cancer treatment and all the information she can get her hands on.  I will be praying for you and for good results.
Robyn

nikkiw1973
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Re:Stage iv?? This thread is for you! - Monday, May 05, 2014 10:08 AM
Hello all. New to this. 40, diagnosed stage IV on march 5, 2014. Went to hospital for breathing problems for what i thought was pneumonia and after many tests, was told that breast cancer had spread to lungs, spine and ovaries. I am learning the terminology so forgive me. HER2 positive. Positive for estrogen and progesterone. I am on tamoxifen and have been on it for about a month and a half. I start herceptin on May 8th. Have been trying to be positive but depression has started creeping in.

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Monday, May 05, 2014 12:26 PM
Hi Robyn and Nikkiw,

Sad to welcome you ladies here but glad you found us and wish you both a great response to treatment with few if any side effects and I hope you'll both keep us posted.

Nikki, I also was highly triple positive and Herceptin was a miracle drug for me and many others and I'm sure you'll do well on it, you can find out more and chat to other long term survivors of her2 cancer here www.her2support.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

nikkiw1973
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Re:Stage iv?? This thread is for you! - Monday, May 05, 2014 3:28 PM
Thank you Tricia.  Will check out the site.

nikkiw1973
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Re:Stage iv?? This thread is for you! - Monday, May 05, 2014 3:36 PM
I am a bit concerned about the side effects of perception, mainly heart problems and lung issues. Has anyone had any bad reactions to it?

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Monday, May 05, 2014 3:47 PM
Nikki, No need for concern as they'll do heart echo's or Mugga tests every three months, if there's any low fraction in the heart noticed below a certain level they stop the treatment for a few months as any damage will repair itself. Believe me you DO want this drug and many have actually got back into remission just from this alone without chemo, if you google Dr Denis Slamon you'll get more info and also at www.herceptin.com
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

nikkiw1973
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Re:Stage iv?? This thread is for you! - Friday, May 09, 2014 9:18 AM
Thanks Tricia. Just realized computer auto corrected herceptin and made it perception. I had my first infusion of herceptin yesterday. Debated about getting it all weekend long, but decided to forge ahead. Not feeling bad. Little tired, but overall ok. Will be getting infusions every 3weeks for at least a year. 
<message edited by nikkiw1973 on Friday, May 09, 2014 9:25 AM>

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Friday, May 09, 2014 1:11 PM
Thats what I had too Nikki, unlike a chemo this only targets the actual cancer cells so in general the side effects are very mild too.
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

jeanmac
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Re:Stage iv?? This thread is for you! - Tuesday, June 10, 2014 4:43 PM
Dear Nikkiw I am so sorry to hear of your stage 4 breast cancer. I am someone who can relate. I, too, have been diagnosed with stage 4 breast cancer, so I know the feeling of fear and of disbelief! I was at first thought to be probably stage 2, because of the size of the lump. But a pre-op chest x-ray showed a lesion on my vertebrae, and after a bone scan and biopsy...yes, stage 4 with mets to spine. I have had a lot of anxiety and yes, feel depression creeping in sometimes. I began radiation last week for pain in my spine. I am due for more scans in July. I began Herceptin, Arimidex, and X-geva on April 18. So far no real side effects, other than hot flashes, they say Arimidex can cause those, but I was already having those because of menopause. This came out of the blue!!!I'm sure every woman who gets this diagnosis says this. I feel for you, but you are not alone. I have 2 adult children, it was very hard telling them. I do thank the Lord that they are grown, on their own, and happy. I just want to be able to enjoy grandchildren some day, and I will keep praying for that, and living one day at a time. Please, send me a private message if you want to, or just a reply to this message. My heart goes out to you. This site is very encouraging, it has helped me a lot. I try to focus on the fact that more and more drugs are being discovered all the time for breast cancer! Love and hugs to you! Love, Jeanmac

TrishTheDish
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Re:Stage iv?? This thread is for you! - Thursday, June 12, 2014 7:02 PM
Hi all you other members of the very exclusive Stage 4 club :-) Very nice to meet you! I'm 35 and was diagnosed in February at 34 with Stage 4 Breast Cancer.... Well originally I was diagnosed with Stage 2 but a breast MRI revealed what looked like a spot on my liver and my sternum and a PET scan confirmed that not only was there a spot, there were several spots. My liver was about fifty percent covered in lesions (I insisted on seeing the actual disk of the PET scan so I could see just how many "multiple" lesions were) and I have spots on my sternum, hip and pubic bones. Original plan was chemo, surgery and radiation but this Stage 4 nonsense derailed original plan and I am in chemo limbo LOL I have one more treatment to go and then I will be re-PET scanned and we will decide how to go forward. I am HER2 positive and ER positive. Before we realized I was Stage 4, we decided to do genetic testing (which I would still do) and we actually tested for six genes including the BRCA genes. None of those genes showed a mutation so I just get to be weird :-) I am taking a cocktail of taxotere, perjeta, herceptin and zometa every three weeks and next Wednesday is last treatment day of this round. I am REALLY hoping for a clean PET scan after so I can break up with taxotere.

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Thursday, June 12, 2014 7:20 PM
Welcome Trish and the best advice I can give you is to check out www.her2support.org for advice and also to chat to others in your situation, but I hope you'll come back here to update us too when you can!
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

TrishTheDish
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Re:Stage iv?? This thread is for you! - Thursday, June 12, 2014 7:45 PM
Thank you Tricia. I will be around to see what others have going on and compare notes :-) I have learned some good "survival tips" from those who have already done this and I look forward to learning more.

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