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 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! - Wednesday, September 16, 2015 10:17 AM
I hope that's the culprit Marcia, if not do ask your Onc to switch you as there are other AI's you could try.
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
jojomomcat

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Re:Stage iv?? This thread is for you! - Tuesday, September 29, 2015 9:17 PM
Hi Tricia, glad to see you still mediating. I used to hang here a lot when I recurred, but lost touch.
It is a bit hard to find, I wanted to steer some of my cancer posse members here, and didn't see any activity for a couple years. Found it By accident!
I'm still hanging in there, cancer has taken the lymph highway through my body, but still celebrating the little victories. Three years past my expiration date, and still living a great life.
Think I need to post this to my Facebook page so my posse can find you.
You can get anywhere in life you choose, as long as you wear red high top shoes.

return trip, triple neg (by med terms only - triple positive in attitude), 17 nodes and gaining, clinical trial pro, and too darn mean to let it win (hence the nickname Mean Jolene)!
Tricia Keegan

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Re:Stage iv?? This thread is for you! - Wednesday, September 30, 2015 12:44 PM
Hi Jody and its good to see you here although I have been following your story on FB and so glad that you're still doing well and enjoying life.  It is a very quiet forum and I've often asked myself is that a good or bad thing lol...I can't remember if I added you to the Komen group on FB so will check later on and add you.:)  It's a private group so only members see the post.
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, April 30, 2016 7:04 PM
Hello all. Just had my two year cancerversary (saw that somewhere and been using it since) in March. Was on tamoxifen for about 18 months and then it stopped working. Doctor has me on Xeloda. Have developed hand and foot syndrome and tumor markers continue to go up. Been on it for about 6 months and it doesn't seem to have worked at all. Will see doctor in about a week and a half and will find out what our next step will be. Hope everyone's doing well.
Tricia Keegan

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Re:Stage iv?? This thread is for you! - Sunday, May 01, 2016 10:44 AM
Hi Nikki,

Huge congrats on your second cancerversary!!


I'm sorry the Tamox stopped working for you, have you asked your Onc about switching to one of the aromatase inhibitors like Arimidex or Aromasin??  I think Faslodex can work well for people who are stage iv and it may be easier to tolerate than Xeloda.  Good luck with your next appointment and I really hope your next regime will be easier on you and stop any prograssion. 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
EW

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Re:Stage iv?? This thread is for you! - Wednesday, May 25, 2016 12:10 PM
Hi, per your advice I am posting here. I just turned 45 and was diagnosed with invasive lobular carcinoma of breast origin. ER+, PR+, HER2 - It came as supervise as I am generally healthy. I have mets on my skin, and expecting to do hysterectomy soon. I am scared and don't know what to expect. Is there anyone out there that can share there experience? Thank you!
Tricia Keegan

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Re:Stage iv?? This thread is for you! - Wednesday, May 25, 2016 3:33 PM
EW,

I sent you a private message and hope to chat more on the FB group, in the meanwhile here's a link that may help https://community.breastcancer.org/forum/106/topics/731932
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
Katsie

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Re:Stage iv?? This thread is for you! - Sunday, April 23, 2017 5:30 PM
Third time BC.  First was a small lump (medullary), which I found in the shower.  Second was 16 years later on the other side (garden variety-whatever that is - as per my oncologist).  I found that one too, in the shower.  After the second time, I opted for a bilateral mastectomy, and partial hyster.  

I was diagnosed with CML (chronic myelogenous leukemia), about 10 years ago, just after the first BC.  I've been taking Gleevac, and am now in remission.  

However, BC returned.  My oncologist for over 20 years, NEVER told me it could still come back after all of the preventative surgeries.  The lump was large and on the right.  My GP said it was a pulled pec muscle, which I thought it was too because I was moving my heavy granddaughter in and out of her car seat a lot at that time.  

My GP sent me to therapy.  The therapist refused to work on me.  The GP then ordered a CAT scan, and there was a "mass".  After wasting 6 months plus, I saw my oncologist who I have been seeing for 20 plus years.  He took one look and confirmed that it was BC.  

He put me in radiation, and chemo.  Radiation for 5 mos., chemo 3 x month, one week off, for a year.  I used to make lists on my PC, print them out, and give one to him, regarding my BC.  Questions that I had.  He never told me that I had triple negative, even after I said that my cousin's daughter was just diagnosed with it!  That seems like that would have been the time to tell me.  He never showed me my tests, and his answers to my questions were one word answers, yes, no...etc.

He was on vacation, so my next appt. was with a young oncologist in the practice.  I told him what my oncologist said, and how he forgot important health (BC) information about me, like I'm BRAC 1 positive.  He also forgot, and admitted that he forgot, that he told me and my son that I had 15 yrs. to live, then called me on the phone and told me 2.  I told him it was as if he punched me in the gut.  He did not recall saying 15 yrs.  

The fill in oncologist took a look at my scans and said the initial BC could not be operated on, which is what my original oncologist said.  It spread to my lung and liver.  The fill in doc said the one on my lung was small.  I almost cried!  I told him then about the goof-ups of the other doctor, and how he never gave me one word of encouragement.  He never even told me what was happening to my own body.  He referred me to another doctor in the group, and told me that I would like him better because he was a talker.  I couldn't continue to see the fill in doc because he was leaving at the end of the week to go to the Hillman Cancer Center, and it's too far for me to get to.

I met the new doc. and the first thing out of his mouth was "I'm not going to tell you what you want to hear."  I realized that my old oncologist told him I was hyper.  Well, the old oncologist is the one who made me that way.  I said all I wanted was the truth.  He showed me my scans (which I had never seen), and my lymph node tests (which I had never seen).  He then told me that I had triple negative.  Now, why was is so hard for the first oncologist to be honest with me?  

The thing that bothers me the most is how totally insensitive the oncology doctors I've seen, are.  They never smile, they never give you any encouragement.  I feel like they think that I'm wasting my time even trying to stay alive!  

I have to see the new one on Friday, this week, for exam and my monthly chemo.  I'm on Doxil, and my hands are peeling, red, and burning.  The soles of my feet are the same.  I'm getting blurry vision, and on the 17th of this month, while talking to my son on the phone, I had chest pain radiating from the left to the right.  I hurried and took baby aspirin.  It stopped.  I also have Sjogren's Syndrome (drying out of skin, eyes, tissues) and my entire family have died from heart disease.  The side effects of Doxil are turning me into a scaly lizard, and my eyes itch because they are so dry.

I cannot seem to get these doctors to be more sympathetic.  They don't seem to care about me, or my health.  I grant you, I'm over 60, but that's not necessarily a death sentence....growing old.  

I don''t know how to get through to my new doctor if his attitude is as per the above comment in quotes.  I'm a nervous wreck over this, and they don't care, believe me.  They all just want to dump on me, and walk away.  I can't go to into Pittsburgh, it's too far, so these are the only oncologists in my area.  

I'm non-hormonal, so this one is difficult to treat.  Even his nurse said to me during chemo, we'll try all the drugs and if we can't find one, that's it.  OMG....I feel so alone, and I feel like I'm living in horrible nightmare.  I want to scream at them, but I won't....but I am sooooooooo tempted, you don't know.  

If you can offer me some advice on how to get the new doc to see me as an individual, and not as his partner's patient for 20 years, I would appreciate it greatly.  We so need a cure.  
Tricia Keegan

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Re:Stage iv?? This thread is for you! - Monday, April 24, 2017 12:46 PM
Katsie hi, 

I'm sorry you've had so many problems with your Dr, this group has become very quiet of late so you may not get many replies. However we have hundreds of members on our closed group on Facebook posting daily, here's the link and I hope you'll check it out. https://www.facebook.com/groups/1588741974737166/
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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