Stage iv?? This thread is for you!

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jeanmac
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Re:Stage iv?? This thread is for you! - Friday, June 13, 2014 8:28 AM
Hi Trish, I must say, you seem to have a positive attitude, which can only help you on your bc journey! I, too, was diagnosed in Feb. 2014 with stage 4, tumors on my vertebrae. The shock is wearing off now, but not completely. I, also am HER2+ and ER+. My original treatment plan was lumpectomy, chemo(grade3), then radiation. I even had negative lymph nodes..then I'm told I'm stage 4! The plan changed after the vertebrae news. I am on Herceptin, Arimidex, and X-geva. Presently I am getting radiation to my spine for pain. I feel for you, and I hope it helps to know that you are not alone, especially with your stage 4 status at diagnosis. Hearing your story makes me feel not so alone, and so I thank you for sharing. I would like to stay in touch with you as our stories are similar. I am a bit older, however, 58 years young. It looks as though our lives will revolve around treatment and scans now. I hope to hear from you, Trish. Hugs to you! Love, Jeanmac

NEWBY63
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Re:Stage iv?? This thread is for you! - Tuesday, June 17, 2014 11:51 PM
You do have a great attitude! I was diagnosed in February of this year, Stage IV Metastatic Breast Cancer. The news hits you hard at first, but you quickly do what is necessary. I will receive my last Taxotere in a few weeks (yeah)! Hugs

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Wednesday, June 18, 2014 3:05 AM
Great news on finishing the Taxotere Newbye and hope you have a great response!
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
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nikkiw1973
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Re:Stage iv?? This thread is for you! - Saturday, June 21, 2014 4:18 PM
Hi Jeanmac. Thanks for responding. It has been tough. Depression comes and goes. I have an adult son. He has not been taking all of this well. I read someone say that she keeps taking it one day at a time. That is such an accurate statement of my life right now. It helps that I can come here for answers to questions that seem to be neverending and that extra support when I begin to feel like I am not going to make it through this.

jeanmac
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Re:Stage iv?? This thread is for you! - Saturday, July 19, 2014 1:38 PM
Hi Nikkiw. I hope you are doing well. I know what you mean about the depression coming and going..today I am having a bad day. I had radiation to treat my bone mets to spine, to relieve pain. Guess what? still have pain. They say it may be a matter of more time is needed. The radiation ended 4 weeks ago! I am getting discouraged. I continue to take pain meds. And continue to pray for pain relief and for strength. I will have scans the end of July to see progress after 3 months of Herceptin. Let me know how you are doing on your journey! Hugs to you! Jeanmac

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Saturday, July 19, 2014 2:48 PM
Jeanmac I'm sorry you still have pain, have you tried Fentenyl patches?  I think some people had relief with that, do ask also to be referred to a pain management specialist who should be able to help.  I'm hoping for good results on your scans but there are other meds if Herceptin fails you, check out the 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

suz777
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Re:Stage iv?? This thread is for you! - Thursday, July 24, 2014 5:25 AM
Well, I had a good four year run on Faslodex. Now I have new mets on my spine again. One at L5 has been given me sciatica pain and they will probably do radiation for that spot. (Brief history: cancer 3x in four years and then managed for 4 years on Faslodex...till now.) I've only had Femara and Faslodex previously (plus chemo), so my oncologist is thinking about Arimidex or Tamoxifen (I lean toward arimidex). She mentioned Xeloda (oral chemo) but would rather try an AI rather than the chemo that may be harder on my system right now (save that for a possible future recurrence). I didnt even make it a year on Femara before disease progression, so I'll admit I'm a little nervous about taking what I perceive is something similar...Arimidex/Tamoxifen...but I'm trying to do some research to educate myself a bit more, plus I will talk with doctor again too. My spirits are still good; of my 3 grown children 2 took the news well and one sobbed. (This is my 4th cancer occurence; 3rd time with mets.) It's just part of managing this chronic condition. Still grateful for many things: I can still work, still do my dragon boating, etc. Will have CTs and/or bone/PET scan to confirm it's only in bones, so things may change, but so far it just looks like a 3rd bone occurrence. But I'm certainly open to any advice. :-) 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! - Thursday, July 24, 2014 3:44 PM
Hi Suzz,

Seeing the positive's (as we must do with this disease) its thankfully still contained to bones so still treatable although as I said earlier I'm really sorry you've had this progression.  This is  the link I was looking for earlier http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/everolimus

If you decide on  Arimidex you may need Lupron shots or an ooph if pre menopausal, I only came off Arimidex after eight years last month and feeling a bit nervous about that but it served me well, good luck with whatever you decide on and 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

ElaineQW
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Re:Stage iv?? This thread is for you! - Friday, July 25, 2014 1:30 PM
Hi everyone - I need your help for an acquaintance.  She has Stage IV originally diagnosed with Her2.  Did Herceptin and is now on TDM-1 (part of the Amelia Study - Perjeta).  I'm only able to parrot what I've been told and don't have any more details except that the TDM-1 is not working. She did connect with Dr. Slamon.  Now she's heard there is a Dr. Pergram at Stanford who supposedly would like to use TDM-1 with another chemo drug (no idea which one).  No clinical trials yet because they can't find the right population.  

I'm sorry for such sketchy info, but what I'm asking is does anyone have any information that might be helpful to her? 

Thanks for you help ladies!
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! - Friday, July 25, 2014 2:03 PM
Elaine a few of the ladies on the her2 site I go to have been having these meds and all the usual up to date info on Treatment are posted there, try checking it out www.her2support.org and hope she finds something to help.
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

ElaineQW
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Re:Stage iv?? This thread is for you! - Friday, July 25, 2014 6:27 PM
Thank you Tricia!
Hug
E
 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 
 






Krisynicole82
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Re:Stage iv?? This thread is for you! - Friday, July 25, 2014 9:00 PM
My Mawmaw was just diagnosed with stage 4 breast cancer. It has mets to her spine and liver. She also has a fracture on her c-spine which may need to be addressed before the chemo. I'm searching for support and answers regarding this BC I don't want her to go. Is there hope at stage 4? 

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Saturday, July 26, 2014 6:28 AM
Hi, I'm so sorry your family are facing this, stage iv is serious of course but with a good response to chemo its still possible to get back to NED (no evidence of disease) does your GrandMother have a treatment plan as yet?
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
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Luckycat
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Re:Stage iv?? This thread is for you! - Monday, August 04, 2014 2:11 AM
I don't know if anyone with triple negative  breast cancer that has metastasized to the lungs and neck has had any luck with cannabis oil either with or without chemo. My mom has been diagnosed with this after being diagnosed with stage 2B triple neg BC in 2007. We are looking at all alternatives and she wants to know if anyone out there felt like they were desperate to live and was willing to try anything and if so, was it the oil and how did it work for you?
Any feedback will be much appreciated.

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Monday, August 04, 2014 5:20 AM
Hi Luckycat,

As far as I'm aware the cannabis oil only helps with side effects rather than heals but I hope your Mom has a good response to the chemo, you could also try looking at www.breastcancer.org as you may learn something to help there.
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! - Friday, August 15, 2014 9:23 PM
Little update: My oncologist is switching me from Faslodex to Aromasin. Hopefully I'll get a nice little run on this med now. All additional scans showed mets in boney areas; no organs (more boney areas than I like, but I'll still take it as good news, all things considered!) 3 more rads left to L5... :-) Suzanne

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Saturday, August 16, 2014 6:07 AM
Thanks for the update Suzz and hoping you get a good response with the Aromasin.
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

Marcia Louise
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Re:Stage iv?? This thread is for you! - Saturday, August 30, 2014 2:21 PM
Hello there. I'm brand new here, forgive me if I'm doing this wrong. I just very recently got my 5th chemo infusion. After my next one I'm having testing done to see how my treatment is going. As far as I know, at that point (assuming all goes as planned) I'm to go on a hormone maintenance pill. I was under the impression that there was only one pill and either my body would respond to it or not. I see by reading through these posts that there are more options for therapies out there. I guess my oncologist forgot to mention that. I will be for sure asking about it when I see her next. 
Anyway, I do find all of your posts very uplifting and inspiring, so I wanted to introduce myself. I think I will need this support more and more in the future. Thank you so much for reading my post, and if anyone wants to reply with encouragement that would be greatly appreciated. Have a great day.
Stage lV advanced BC. ER+/PR+/HER2-/ mets to nodes traveling up neck. Dx in April, 2014. Previously on Taxol. Currently taking Arimidex.

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Saturday, August 30, 2014 3:00 PM
Hi Marcia Louise and welcome,

I'm sorry you had to join us though, this thread is often quiet these days and most people tend to post just on the Sound off forum so don't worry if you don't get many replies but feel free to post anywhere.  

There are a few different hormone therapy pills, generally Tamoxifen is given to people who are pre menopausal although not always, Arimidex and Femara are sister drugs usually given to post menopausal women and I took Arimidex for eight years and just stopped this summer. Aromasin is another that works a little differently and Faslodex is usually given to anyone stage iv so hope this helps. 

Hopefully you've had a good response to the Taxol and if researching stick to reputable sites like www.breastcancer.org  and please keep us posted on how you get on.
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

ElizWhitney
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Re:Stage iv?? This thread is for you! - Friday, September 05, 2014 9:16 PM
My sister, Marilyn, has Stage IV mets, and was diagnosed in April 2013.  She was in remission for seven years and then the cancer came back with a vengeance.  Marilyn has cancer in her liver, lungs, lymph, spine, bones, brain and bloodstream. After being diagnosed in April 2013, she underwent brain surgery to remove a large but superficial tumor, and then ten days later had CyberKnife radiation therapy for the large tumor on her spine at T2, and then Tomotherapy radiation for the large tumor on her spine at T7.  A few weeks later she had Gamma Knife radiation on her brain. The docs tried immunotherapy for the first six months and that didn't help, so they put her on chemo.

Over the last year, Marilyn has been on three different kinds of chemo, which helped in some areas but not others.  Her last CT scan revealed two new tumors in her brain, which were treated by CyberKnife therapy this past Wednesday. The week prior, Marilyn had a PET scan which revealed more legions on her liver and lymph but there was some improvement in the bones.

The reason I am writing is because I am having a hard time coping and would sincerely appreciate your advice, if you are willing to share.

The issue for me right now is that my sister has been distant since our father died of colon cancer in 2002. We used to be very close but after dad passed, and after Marilyn was initially diagnosed with breast cancer in 2007, she began distancing herself from me.  My mother and I thought it was because I had four children and Marilyn could not have any children after chemo triggered menopause.  While my sister kept a very close relationship with my children, she has completely cut me out of her life.

Our mother has been battling bladder cancer and had four surgeries last year, and is now in remission. At a time when you might think this would bring Marilyn and I closer together, she became even more distant and verbally absuive.  This was just before she was diagnosed with Stage IV mets in April of 2013.

Since Marilyn was diagnosed with mets last year... she wants nothing to do with me at all. She won't speak to me, won't allow me to visit her in the hospital or support her in any way.  Marilyn and her husband Kim were blessed with two beautiful boys they adopted at birth, Robert age 7 and Emerson age 5. Marilyn will not allow me to have a relationship with her boys either, even though she sees my children frequently.

My mother is caught in the middle and is afraid to talk to Marilyn about restoring our relationship because Marilyn might cut her out the way she did with me. She wants to be there for Marilyn and is with her as often as Marilyn needs her to be.

You should know that we also lost a brother at the age of 18, Robb was his name. He died suddenly from a brain aneurysm.  Marilyn was 15 and I was 14 years old.

I am really struggling right now because there is a high probability that I will lose both my mother and sister in the next five years (mom is 82 yrs old).  With my dad and brother gone, and then my sister and mother pass... I honestly don't know how I will manage to survive. 

There are no words to describe the pain I'm feeling. I feel so bad, and guilty, that my sister is harboring bitterness toward me. I want her to be able to let that go and allow me to love her, and be there to support her in any way possible. The negative energy she is holding onto is not helping her medical condition and I feel responsible. I also feel horrible that I'm not there to love and support her.  If she dies with hatred in her heart toward me... I will have to live with that the rest of my life. Knowing that I contributed to her pain... I don't know if I can live with that. 

Then there's a part of me that's angry because Marilyn and I could be spending time together, and it's such a waste of precious time for her to be angry at me... and for what?

I feel so helpless but don't know who to reach out to because I don't want to make this about me.... my dear sister is the one who is battling cancer.

Do you have any advice for me?  Is there something I can do to help her understand how much i love her and want to be there for her?

I'm so sad.

Elizabeth


<message edited by ElizWhitney on Friday, September 05, 2014 9:22 PM>

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