Stage IV TN

(((hugs))) blondelawyer. You'll surely get some encouragement here from the other ladies. We just wanted to reach out and say we're here too for you

--Your Mods

blonde lawyer - Stage IV here, diagnosed in September 2011 after a year-long battle with this disease. I've followed your story quietly, and I'm so sorry for what you are going through. How much can one person really bear?



My cancer too is very aggressive, and I don't anticipate being someone who can go years on various chemo regimens. I have three small children (10, 7, and 4), and that is the hardest thing to come to terms with, and I'm still struggling.



Please feel free to PM me if you ever need to vent, rant, cry, anything. This sucks, no question.



Susan

I am also TN BRAC1+, dx @ 29 in 2008 with METS to Lungs and Liver, have been NED for 2.5 years and off Chemo which has the doctor's scratching there head.  My doctors went all out on the Chemo throwing everything and the kitchen sink at the cancer...Not sure how much longer the no Chemo ride will last becasue I am battling another diesease that really started to flare after I got my immune system back, just my luck another inherited gene decided to activate.....Just got a bone scan on Friday to determine if the pain in my bones is METS or arthritis from the autoimmune disorder Sjogren's Syndrome.

None of this stops me from living life to the fullest, the way I see it shit happens, would I pick this life if I had a choice...ummmm...H*LL no but I have no choice, I also still work full-time...

I was dx out of the gate at 29 with Stage IV Mets to liver and lungs. I had procrastinated about getting the gene test since my mom was positive I had a 50-50 chance, I got the BRAC 1 + result on the same day as my Stage IV result. 

The rest of my family who also had been procrasinating got the test done my double first cousin (my mom's brother married my dad's sister) tested positive and according to the doctor's we are basically sisters becasue of some many gene's in common they immediately ran CT Scan, PET SCAN, etc getting base scans and making sure nothing was hidden (she has two daughters).  I also have a male cousin that has the gene (got from his mom), he got double whammed his dad has prostate cancer (he also has two daughters, they plan on telling them at 18 annd allowing them to make the decision to get tested).My sister tested negative for the gene.

Hello everyone,

Add me the list. I was diagnosed with mets a week ago with mets to half the liver, lungs, bones and nodes. I have not had a Brain MRI yet. I also have two little girls. I start Gemzar +Cisplatin on Wednesday.Please PM if you ever want to talk. I had my liver biopsy on Friday to confirm that I am triple negative again. Do not have results yet.

Hi, my best friend is IBC TN and was dx 12/2011. Unfortunately, she was mis diagnosed by her primary as a breast infection and was put on antibiotics for a month or so...... Eventually doc told her to get tests done and IBC was discovered. As of today, she has had 3 infusions of Taxol but cancer grew. Doctor told her it looked like she moved to stage 4 and not much he could do. She went for a second opinion to md Anderson and is currently there completing new tests. However, before she left for Houston, she received 1 infusion of AC. I'm wondering if anybody has ever experienced Taxol not working? And what are her chances that AC is working? Because taxol didn't work, she is very frightened that AC isn't doing much. I feel for my friend so much...this roller coaster of a ride is cruel. We are hoping there will be a treatment plan come Tuesday that will help her fight this terrible disease. I've been searching the web, on other support sites and hoping for some positive feedback. I do find that there is success out there.....I just hope my friend will be able to find it too.

Hey Blonde..how is the navelbine going?  Thinking of you!

Another TN Stage 4 with IBC in treatment for second occurrence in lungs.   Using Halaven (Eribulin) this time but started this journey in 2009 with AC but was allergic to A (doxorubicin) so continued on CT. Surgery showed 14/15 positive lymph with some breakout, followed by radiation.  One year NED and then the 4 bone mets and upper chest including both lungs flared.  Treated with Zometa, Xeloda and Ixabepilone and cleared it all - onc was so excited he gave me copies of the 2 PET Scans!  This lasted for 6 months even though I stayed on the Zeloda and Zometa. My 6  month PET scan was clear but I had fluid in the lungs which had cancer cells.  Just finished cycle one on Halaven and am optimistic!  I am more fortunate than many of you as I am 61 and my children are grown but you never want to leave them or the grandchildren.

Reddog: I have an IBC surviror in my support group who went to MD Anderson and she is doing great!!  Keep us posted.

I'm sorry to hear about your diagnosis but wanted to give you some hope. I was first dx in 2001 in my left breast.  I had a lumpectomy, chemo and radiation.  In 2005, I was dx in my right breast. I had a lumpectomy, chemo, radiation and Herceptin.  Stage I both times.  In 2009, I had a recurrence in my chest wall. Started chemo again.  I found out I had mets to the lungs shortly after that. Changed chemos.  About a year ago I had mets to my Mediastinal Lymph Node and in the chest wall where original tumor was.  In Sept. of this year I found out that I had brain mets and had whole brain radiation.  Tumors (three) shrank about 50%.  Two weeks ago I had Stereotactic Radiosurgery.  I will have MRI in 2 months to check the results.  I will resume chemo in a few weeks. (Gemzar).  In August it will be 11 years that I've been dealing with this. Overall, I handle things fairly well.  It's not fun but I just do what I have to do. My son was 7 years old when I was first diagnosed.  He will be 18 in 2 months and graduating from High School. I never thought I'd be here to see that day.  By the way, I was triple negative when first diagnosed in 2001, er/pr-, her2+ with 1st recurrence in 2005 and this recurrence is once again triple negtive.I just wanted to tell you to hang in there.  Statistically, I should have been gone a long time ago. I don't even look at the statistics anymore.  There are many long term survivors of Stage IV cancer.  I wish you the best.

You friend's storey, sounds so close to mine. I too was miss diagnose by my family dr. and was put on antibiotics for breast infiction; for my final diagnoises with a breast care center; Stage 4 TN, left breast, osteopersis, cancer in the bones. When I first strated my chemo; I was put on AC... It was a very hard Chemo to start with; but it worked for me. my tumors were shinking 2 centermeters every three weeks. by my fourth month my OC put me on Doxil. but then there was a chemo shortage last summer and Doxil was one of them. Unfortinatly I had to go back on AC. Doxil  was a lighter chemo and I was able to taste again and feel some what normal. well eight weeks later; my Doxil was back and I also had a bonescane and a catscan. the results were wonderful... NO CANCER IN THE BONES!!! By the end of December I was NED... I was NED for three months. My hip started hurting and found out from an MRI that the cancer came back in my hip. We did 15 treatments of radiation. A month later my tumors in my breast were coming back; so we were planning on Taxol; but the Cancer had other plans. I was having a hard time with my left arm and leg the day we were going to start Chemo, when I told my OC. She said No chemo today... MRI, ON THE BRAIN... Sure enough, both sides had a small tumor... so, 15 treatments of Radiation to the whole Brain. Last Friday we started Taxol... so far, Taxol has given me a little numness in my feet... and fatgue. and thrush in the mouth :P

I hope AC works wonders for you friend; as it did for me.

to all the girls out there that have TN STAGE IV... In the past month I was DX with a large tumor in my liver and some small ones too. I was already on taxol, every week; but nothing was shrinking; infact my tumors were growing. My Dr. Had  A meeting with other OC'S from St ANN'S Hospital; MA and Dana Faber Boston MA. and they wanted to see is I had this beisel gene with my TN. If so then they would put me on a NEW regement. The regiment is two chemo drugs ( Carboplatin and Gemcitabine).... the first treatment is with both; then the second treatment ( the fallowing week) Is w/ one and the third is with the other) and then start over. So far I have had no bad reactions to thease treatments just a little fatigue and I have gotten a bit anemic. yeasturday I had goTten results of a catscan and..... all tumors are shrinking including in the LIVER!!! i JUST WANT YOU ALL TO KNOW BECAUSE NO MATTER HOW BAD THE NEWS COULD BE THERE IS ALWAYS A LIGHT ATTHE END OF THE TUNNEL

Come on over to the Stage IV forums too. Lots of advice and support on there as well. I've been on Abraxane  - once weekly infusions for a cycle of 3 weeks on and one week off since November of 2011. (for mets to lungs). It's kept me stable/no progression, and it doesn't seem to be too harsh. I've continued to work while on this chemo and the side effects are manageable. Hopefully, it will keep working for me for a good long time.