Stage iv?? This thread is for you!

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Tricia Keegan
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Re:Stage iv?? This thread is for you! - Saturday, September 06, 2014 1:48 PM
Hi Elizabeth, I'm so sorry for this sad situation, is there a chance your Mom could ask your sister to simply meet you for a chat and explain how you want to be friends? or maybe write to her?  I'm afraid if she's adament on not seeing you there's little you can do about it as its her choice but if the worst happens you can at least know you tried your best.

In the meanwhile though it may be very helpful for you to get one to one counselling to help you through this and understand the situation more, I really dont see any reason you should blame yourself. 
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, September 06, 2014 1:49 PM
Hello ladies. Six months ago today I was diagnosed. It's been such a blur. I just had all new ct scans done and echo and I am waiting for results. Overall, I feel okay. Haven't been really depressed lately, which is great. Keeping busy with my two jobs, supportive friends, etc. Still taking tamoxifen and doing herceptin infusions. My son is doing much better. I feel blessed. I am encourged by my tumor markers, although I know a lot don't put much stock in it. My numbers when I was diagnosed were over 2000. As of my last bloodwork results, they were down to 950. I will take any positive news where I can get it. I am actually beginning to feel that I can make it through this and not so much like I am on death's doorstep.
<message edited by nikkiw1973 on Saturday, September 06, 2014 2:21 PM>

nikkiw1973
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Re:Stage iv?? This thread is for you! - Saturday, September 06, 2014 2:25 PM
Hello JeanMac. I hope you are doing well. How is everything going?
<message edited by nikkiw1973 on Saturday, September 06, 2014 2:28 PM>

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Saturday, September 06, 2014 6:03 PM
Nikki so glad to read such encouraging news and hope that continue's 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

nikkiw1973
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Re:Stage iv?? This thread is for you! - Saturday, September 06, 2014 6:09 PM
Thanks Tricia!!

thdancingferret
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Re:Stage iv?? This thread is for you! - Sunday, October 19, 2014 7:38 AM
I hope I'm posting in the right place, forgive me if I'm not. I was diagnosed with invasive lobular cancer in 2006 and underwent mastectomy and dose-dense chemo. A few months after the chemo ended, I developed spinal pain and was diagnosed with degenerative disc disease, likely caused by the Neulasta which had given me horrendous bone pain. I eventually had to have a spinal decompression/fusion and a titanium cage was implanted. In 2010, I lost my job due to illness, and hence lost my health insurance as well. I only just got insurance again this year thanks to Obamacare, so I hadn't been able to follow up with an oncologist or get a mammogram since 2010. Several months ago, I suddenly started to get severe pain in my hips at night that my orthopedist thought was nerve pain from my back - I couldn't afford an MRI at the time. Just last week, I developed severe nausea and vomiting - every 10-15 minutes - and had to be taken to the ER by ambulance, where I was admitted. The admitting doctor said my blood tests showed I was anemic and had high blood calcium before they super hydrated me with IV fluids, and that I needed to follow up with my primary doctor right away because he was worried my breast cancer had metastasized to my bones. I was discharged on Saturday and saw my primary doctor Tuesday. He re-ran blood tests to get current numbers and I was still slightly anemic and my blood calcium was on the high side of normal but he thought it could still be slightly diluted from all the fluids they'd given me. He also is worried about the possibility of bone metastasis and wants me to see an oncologist ASAP, referring me to the North Shore Hematology Oncology Associates group. They're getting me in tomorrow afternoon. I'm terrified and can't sleep, I don't know what I might be facing, what tests I'll have to have, what treatment, etc. Any advice or suggestions anyone can give would really be appreciated, thank you.
Christina Engert, from New York - Dx Sept. 2006 Stage II ILC with Tubulolobular Characteristics. ER+/PR+/HER2-, Dose-dense Adriamycin/Cytoxan, Tamoxifen 1 year (Discontinued due to side effects), Mastectomy Oct. 2006, Total hysterectomy Nov. 2011

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Sunday, October 19, 2014 1:00 PM
Hi Christina and welcome, please try not to panic although I know its not easy, I had suspected bone mets three years ago and can tell you the first step is usually a bone scan, this can also show up old injuries and arthritis so if any "hot spots" show they'll follow on with an MRI, in my case this was inconclusive and the spot was too small to be biopsied so I had to wait two months to see if there was any growth and then follow up with a PET/CT, thankfully this was clear and my Onc felt I didn't have bone mets after all, if not she would have done a bone biopsy.  

I know its a very scary time for you but in my case I think all my pain was due to sciatica which I've suffered with ever since, try not to think the worst, in my own opinion I think many GP's know a lot about everything but little about any one thing, stay hopeful and if its bad news we're here for you, also bone mets are the easiest to treat and these days tend to be treated as a chronic rather than terminal illness.  I think there's a very active forum on www.breastcancer.org and please keep us posted, good luck!
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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jeanmac
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Re:Stage iv?? This thread is for you! - Wednesday, November 05, 2014 10:34 AM
Hello Nikkiw, I haven't been on the site for some time,needed a break from all things advanced BC. I am doing ok, it's been 8 months since my diagnosis. I'm finally almost rid of my back pain, but I still take it a day a time as far as that goes.Definitely less pain meds are needed:) I am working 2 days/week, which helps me feel normal, but I do get tired. I have been on a faith renewing and spiritual journey, giving it all to God. Believe me, I do this all over again each day when I wake up! I helps to know that Jesus is walking with me every day, all day, always. I don't know anything about your beliefs, just thought I would share. I feel more at peace, and am taking one day at a time. I'm still getting Herceptin, and Perjeta has recently been added, as they work better together. I am so thankful that this regimen is well tolerated. One of my main issues has been hot flashes and poor sleep. My primary care doctor started me on Gabapentin, which is an anti seizure,med, but has been used off label for hot flashes. I am happy to say it is working for me, I am sleeping better, noticing far fewer hot flashes! Just thought I would share... I hope you are doing well, Nikkiw, I hope you will post a message again soon! Love and hugs Jeanmac

cjlen
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Re:Stage iv?? This thread is for you! - Saturday, December 20, 2014 3:12 PM
My wife is in Stage 4 and has been for about 2.5 years now. This year has been very tough for me. It is as if she went from this valiant woman who was overcoming the odds to a frail person almost overnight. She insists on going to her oncologist appointments alone so I don't know much more than than what I can see with my own eyes. My struggle is not pushing her to tell me more and balancing that with preparing myself and our family. I'm not sure what to do.

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Saturday, December 20, 2014 4:12 PM
I'm so sorry you all are facing this and of course cancer affects all the family and not just the patient.  Your wife may be a little worn down with her treatments and more likely wanting to protect you all from what she is facing, she may think this is a good thing for you all but obviously from your point of view its making everything more scary. I can only suggest you continue to be there for her and be as strong as you have been, try to tell her what this is doing to you and how much you want to share this tough time with her. I don't know if you've tried a support group but that too may help and give you a chance to offload your fears and emotions.  My best wishes to you both and I really hope this gets easier for all of 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
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nikkiw1973
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Re:Stage iv?? This thread is for you! - Sunday, January 25, 2015 9:01 AM
Hello. I took a little break from all the bc sites for a bit during holidays. Checking back in to see how everyone is doing. Time has flown by. Coming up on 1 year since diagnosis in March. Still doing tamoxifen and herceptin. Getting zometa every four weeks. Just finished 10 sessions of radiation on my arm. Will do 10 on my spine and then 10 on my hip. I've had pain in both areas for quite a while. I am happy to report my tumor markers are down in the 200's. I give all praise and honor to God for this miracle. I am still able to work my two jobs and my son is coping much better. So glad to hear from you. Please keep in touch!

nikkiw1973
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Re:Stage iv?? This thread is for you! - Sunday, January 25, 2015 9:13 AM
Sorry. Meant for Jeanmac specifically, but also an update to everyone on my bc journey.

Tricia Keegan
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Re:Stage iv?? This thread is for you! - Sunday, January 25, 2015 1:24 PM
Thanks for updating us Nikki and I'm so pleased you are doing so well!
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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Marcia Louise
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Re:Stage iv?? This thread is for you! - Tuesday, February 17, 2015 5:08 PM
Hello there. I'm currently taking Anastrozole. I've been taking it for a little over 4 months now. After my round of Chemo all my eyebrows and eyelashes and even nose hair grew back. Now it seems I'm losing them again. My Dr. tells me there's only a very small chance of hair loss with this medication. I was wondering if anyone has had a similar experience with it. Have a great day everyone.
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! - Tuesday, February 17, 2015 5:42 PM
Hi Marcia Louise and welcome,

I'm sorry for your diagnosis, I also took Arimidex (anastrozole) for eight years in total but think your eyebrow and lashes falling out is due to Taxol rather than that. When I did taxol my lashes and brows grew back a total of three times over the course of a year before they stayed for good.  It helps if you can do a "Look good feel better " programme which shows you how to make the most of your make up while this happens and most hospitals run them and you also get some freebie's 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

Marcia Louise
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Re:Stage iv?? This thread is for you! - Thursday, February 19, 2015 12:50 AM
Hi there. Thank you so much Tricia for the reply. I was worried that there was something I was doing wrong that was causing this. Can I ask if you also lost your hair on your head the second and third time as well? It's hard to believe that over 5 months after my last Chemo treatment it could still be causing this, also I do still have quite a bit of neuropathy and I believe this is from the Taxol as well. I'm still hoping this decreases some because the Dr. tells me that after a year what's left is most likely permanent. Thanks again. Have a great evening Tricia.
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! - Thursday, February 19, 2015 4:08 AM
Hi Marcia,

No, glad to say my hair stayed put once it grew although it did come back curly and grey lol, the curls fell out after a year or so but I still have a bit of a kink in it all these years later. I hope the neuropathy clears up for you too as it did with me, if it doesn't there are meds you can take for it but they have side effects too so I'd hold on if 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

Marcia Louise
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Re:Stage iv?? This thread is for you! - Thursday, February 19, 2015 11:36 AM
Hello Tricia,
I also had cancer 22 years ago and lost my hair then from chemo as well. It grew back super curly, I lost the curl after a few months but always had the slight wave/kink in it. It was never straight again like it was before. It seems curly this time too (it's still very short, so hard to see to what extent yet), and there's lots more grey than before it fell out. I just can't imagine why. Needless to say I'm embracing the grey this time, no more hair dye for me. Yes I'll hold off on meds for neuropathy. I don't know if I want to treat the side effects with more medications, not yet anyway. Thanks for your support Tricia. It means a lot to me. Have a good 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! - Thursday, February 19, 2015 2:25 PM
You're welcome Marcia, I'm so sorry and it must have come as a massive shock to be dx again after all that time, I admire your positivity and hope you can put this in the past for good very soon. I must admit I do still colour my hair and if I go to a new hair stylist they always think I've had a recent perm lol, I tell them last one was in the eighties but once I mention chemo they understand!
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

lwallace
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Re:Stage iv?? This thread is for you! - Friday, March 13, 2015 6:09 AM
Hi Michelle,  I too am recently do stage 4 metstatic hormone positive breast cancer. Had stage 3b breast cancer in one breast and 6 positive lymph nodes in 2010, had 20 wks of chemo and 6 weeks of radiation following a lumpectomy. Would love to talk more! Let me know if ur still active on this site and how ur doing. U can find my introduction under newcomers lwallace. Look forward to hearing from you.

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