Topic: Lets start a Roll Call

Here goes!

Todays date:   6/18/2008

Original DX:  May 2005   Stage 2 trip negative  lumpectomy,

AC and taxotere, 30 rads.

Diagnosed with lung mets:  January 2008.  (Found on unrelated CT scan - still have no symptoms)

Xeloda - failed me

Now on  Gemzar and trial for Avastin.  Had pretty good scans after two months.  However I was just kicked off of trial because it was for triple neg only and it has now been determined that I am slighly her2 positive.  New onc retested old breast tumor plus new lung bx and they are both her2pos.  My oncologist is appealing their decision.

Watson

Bonnie

June 2008

Dec 1998 - Mammogram shows mass in left breast

January 1999 - Lumpectomy -  ER+, Pr+, 2cm, Lymph - vascular invasion, 22 lymph nodes all clear

February 1999 - Chemotherapy - A/C

Summer 1999 - Radiation

September 1999- May 2002 - Tamoxifen - stopped because of pregnancy

December 2002 - Birth of twins by C-section, Doctor thought ovaries looked suspicious, so sent piece for biopsy.   Test came back as breast cancer.

January 2003 - Bone scan shows legions in back, hip, and shoulder. Had ovaries removed. Started zometa every three week, and femara

July 2005 - CT scan and MRI found cancer in liver.  Started xeloda, and continued with femara and  zometa every three weeks.

April 2007 - CT scan showed increase in liver mass. Started sorafenib with arimidex, continued with zometa every three weeks

October 2007 - New legion in bones in back, liver stable. Stopped sorafenib.

November 2007 - Started Abraxane (4wks on 1 wk off) and Aredia (every 4wks)

March 2008 -  Scans showed increase in bones in ribs and back. Reduction in liver about 30%.  With Abraxane (4wks on 1 wk off) and Aredia (every 4wks) - Added Aromasin

June 2008 - Chemo break, Scans showed bones stable, and slight reduction in liver.  Still on Aredia (every 4wks) and Aromasin

Oct 1991 first diagnosed w/Infiltrating Ductal Carc.    Had Left Mastectomy, 19 lymph nodes removed followed by 4.5 years of Tamoxifen.

Jan 2004, new diagnosis, right side.  Had Mastectomy, 24 lymph nodes removed, 4 involved.  Port placed.  Had chemo, I forget which, Cytoxin,Taxol and Adriamicin, I think, followed by 6 weeks of radiation.  

Nov 2006 tumor markers elevated at routine check appointment.  Scans showed cancer in liver and bones (hip and neck).  Participated in a clinical trial with success for almost one year until medical emergency w/internal bleeding and blood clotting caused end to trial for me.  At that point I was in complete remission.

Jan 2008 cancer again in liver and back. New port placed.   Started Navelbine and Zometa. 

June 2008, tumor markers again elevated, progression in liver and awaiting results of most recent scans.   Taking a short break (before starting new treatment) for family trip.   Don't know what I'll be doing next.  Will probably learn before the end of this month.

Started on Faslodex injections, and Zometa infusions once a month on 7/08/08.

Great idea! Just when I was running of hope, I received good news via my 6-6-08 pet scan. Drugs are working. Much of cancer is gone, decreasing or is more stable. I am receiving Avastin/Abrxane. My oncologist was so happy, she could not stop smiling. This combination is one of about 9 or 10 that I have received. Blue outlines other info. about me. Take care all! Hugs-susan 320

P.S. my bump in the road this last week, was developing congestive heart failure. I had to be evacuated by ambulance from one hospital to another, due to dangerous record flooding lapping at the doors of where I was hospitalized.l It was wild! My heart function has improved, so back to my regular routine. YEA!

PineHouse - written June 2008

(ER-/PR-/HER2-, AR-, BRCA1+) 

STAGE II dx:

- 12/1996: Rt breast lump, AC->Taxol, radiation

- 06/1999: Lt breast lump, CMF, radiation

- 10/2003: Rt breast recur., Taxotere

Metastatic to lungs, dx 06/2006

Avastin+Taxol (6mos), Carboplatin (8mos), PARP Inhibitor-failed

Rebiopsied 01/2008 including chemo-sensitivity testing 

Navelbine+Xeloda-failed, Avastin+Ixempra-stable per CT 6/08.

Currently going crazy trying to see multiple doctors to find "the next treatment".  My onc. is at lost.  He thinks further chemos are not only too toxic but also unlikely to work, he wants to get me on novel therapies.

What a great idea.

Vancouver Washington

original diagnoses 12/05

  Invasive cancer right breast suspicious lumps in left breast

  doulble mastectomy

  microscopic trace in one node

  4 months of ACT

  After treatment Arimidex daily

Met diagnosed 12/07  (hate December)

  mets to spine and innumerable areas is the liver

  I am currently on my 6th month of 3 weeks of abraxane, first and third week also avastin and then once monthly aridia.

Last scan showed shrinkage so I am keeping my fingers crossed

October, 2002

Diagnosed with C4 and bone (ribs) mets

Tamoxifen for a year (recurred), chemo and the start of Zometa, then onto Arimidex  for about 13 months(recurred), then Xeloda then rads. Changed to Aromasin and  do Zometa every 3 months.  

Have been on Aromasin for the last 2 and half years and still do Zometa every 3 months.

Hope this makes sense to you out there.  

Thanks for the wonder idea of a  roll call

I'm so glad I stopped by. I honestly scanned the discussion and I feel some relief and hope. I'm 30 years old and my bc has metastized to my left pelvis and right lung. and i guess reoccurence in the right breast again. My story is in my profile (up to date since last appointment) The first time I wasn't scared and I just did what I had to. This diagnosis just keeps getting worst and death crossed my mind this time. But seeing you ladies have gone through all this. I feel hope. GREAT IDEA on the roll call.

Helen  dx 3/2//2005

Went to ER for acute back pain- xrays compared w/ (normal) xrays from a year ago showed compression Fracture to T5 and degeneration in T2-T6 with what was thought to be cancer

Several scans and test later- modified right radical mastectomy w/ 26 of 32 nodes positive

14 tmt of rads to the thoracic spine;  Muga scan was too low plansfor AC scrapped and did taxol/carboplatin for 6 months until tumor markers started rising; Began aredia 7/2005 every 4 weeks;

Switched to taxotere 10/2005;  Added arimidex in 4/2006;  5/2006 Hospitalized w/ atrial fibrillation and adrenal exhaustion. 

9/2006 dx w/ osteonecrosis of jaw bilaterally  discontinued aredia;

9/2006  began tamoxifen  no response

11/2006 femara   no noticeable respons

1/2007  began xeloda 2 wks on 1 wk off  4000 mg day

2/2007  hospitalized w/ food poisioning, dehydration and xeloda reaction

3/2007  decreased xeloda to 3000 mg. daily  (tumor markers were 734 in January now at 527)

7/2007 tumor markers at 96

8/2007 decrease xeloda to 2500 mg. daily due to increasing side effects

9/2007  tumor markers up to 234

1/2008 tumor markers 888   began faslodex

1/2008 bone, liver and lung scans- showed 3 spots in rt lower lung and major progressions to pelvis,  sacrum L5, rt & left ribs, cervical spine, skull, right mandible, left upper arm and left hip

Did 3 more injections of faslodex 4 weeks apart  4/2008  TM  3100+

5/2008  14 trmt of rads to the left hip   TM 3442 (not rising as fast)

6/13/2008  Muga scan now 56 (was 45 in 3/2005)  Began doxicil ( similar to adriamycin)

will have the second one 7/11

With the exception of the hospital visits, I have worked full time and use percoset now to control the bone mets pain, which can get pretty intense sometimes.  I've lost my hair 3 different times (once was from the ardrenal exhaustion)  With the doxicil, its been nearly 3 weeks, and so far I only have som thinning, but my eyebrows are itchy, so I figure some hair loss is probably in my future again.   I also have had 2 heart attacks 1/2001 and 3/2002, diabetes (1992) asthma (2000) and high blood pressure (1972) makes for fun times with the chemo and other treatments.

I forgot 4 rounds of cytoxin and adrimyacin

No rads and have been on arimidex for 4 years

Here is what I remember to the best of my ability.  Chemo start dates are approximate. 

09/14/2004 Initial BCA dx of infiltrating ductal carcinoma. ER+ PR- HER2-.  Grade 3.  Lumpectomy followed by four rounds of AC, four rounds of Taxol, 35 radiations, and then put on Tamoxefin.

 08/31/2006 Discovered I was BRCA2 +

09/06/2006 Almost two years to the day of first dx I was discovered to have lung mets.

10/24/2006  Abraxane and Avastin (Avastin was a clinical trial drug)

07/07/2007  Gemzar, Cisplatin, and Avastin

01/22/2008 Iexempra

03/01/2008 Xeloda

05/20/2008 Navelbine

Just updating the latest.  Mid September 2008 diagnosed with brain mets.  My pattern seems to be major progression every two years in September.  Okay, now I have to get that out of my head!  No way am I going to let any self-fulfilling prophecy stuff. 
Dx 8/2006, Stage IV, Grade 3, 0/5 nodes, mets, ER+/PR-, HER2-

OK...can't remember crap, so all dates are approximate!

5/5/07 Diagnosed with metastaic spinal lesions, mostly T4, L5. Compression fx L5 from tumor.

5/07  Vertebraplasty to L5. Subsequent testing showed primary site L breast with small tumor

         also in R breast. ER+/PR+, HER-

         Radiation to thoracic and lumbar spines, 17 treatments.

6/07  Started Tamoxifen and Zometa.

8/07  Bone scan shows progression to several thoracic vertebrae also c spine, l scapula, and ribs

         Radiation to neck and t spine not already irradiated.

10/07  Scans show progression to pelvis, coccyx, more ribs, scattered foci in spine.

         Now on Arimidex, con't Zometa.

         Radiation to coccyx and pelvis.

1/08   Scans show further bone progression. Switched to Faslodex, Zometa con't. Arimidex con't.

4/08  Tumor markers down!

Right now, am scheduled for bone and PET/CT scans Aug.1.  Fingers crossed!!! Hoping the Faslodex has stopped the Monster!!

I know the dates are screwed up, but that's basically my story.

XX for all of us fighters!!

Joy

Hi,

Great idea!!

This story begins at age 32

5/2003 Dx with BC

6/2003 Sectional mastectomy with reconstruction, port implantation and lymph node dissection. +tive lymph nodes. ER+, PR+, Her2neu+

7/2003 Chemo : 4 cycles of FEC

9/2003 Radiation to the breast and lymph node dissection area

11/2003 4 cycles of taxotere 

2/2004 Started Tmoxifen and continues for 3 and a half years

3/2004 Radiation to the ovaries to completely shut them down

11/2006 Arimidex for 6 months

4/2007 PET shows bone mets to one area on the spine

5/2007 Aromasin, Megace and Bondronate for 3 months

8/2007 Chemo again. 2 cycles of Herceptin + Taxotere, 6 cycles of Herceptin + Navelbine, 6 cycles of just Herceptin. Bondronate continued throughout.

4/2008 PET scan shows improvement. But there is a new spot adjacent to the original one.

5/2008 Radiation to the spots on the spine

6/2008 Started Femara

Now am waiting for the next scan.

In the middle of all this, we adopted a baby girl who is the joy of our lives. And I plan to see her grow up.

Cheers

Buibble

Here I go..taking a big breath of air....ready set go....

First my nodes history:  Had right mast first. 3/06 - 26/27 than 2^nd mast. 6/7- 27/27 than and experimental PET Probe surgery removed 4 more on right chest wall/lower shoulder and under my right armpit. 4/4...OH NO! That's 57 nodes.

1. 1. Dx 11/5 very large tumor right side mast. - bc all the way up to my collarbone, but not in collarbone. Chemo ACT (bc triple on this) - taken out with 1^st mast.
2. 2. 7/6 - One week after completing rads, I found two small tumors in left breast.
3. 3. 7/6 later inflammatory bc on right chest wall. (Can not do 2^ndmast must do chemo first) tx with Gemzar, Carbo & Avastin. Respond with IBC not left breast. Ship off to MD Anderson 01/07 for a really bad Phase Drug trial. Six months later still have cancer in left breast  Finally had left breast removed in 06/07. Had concern of possible met to my saliva gland. Turn out just swollen due to chemo. Also had concern of supraclavicular nodes.  Turned out a blood clot from chemo.
4. 4. 09/07 Recurrence on right chest wall high above the breast but below the shoulder. Also deeper in the axilla on right chest wall. This is where I had the experimental Pet Probe surgery a Moffitt Tampa.
5. 5. 12/07 Recurrence's in left axilla deep in chest wall. And on the right side in the same place. Scan in Mar 08 PET scan showed left side resolved and right side reduced in size while on a natural protocol.  Possible new place showing "next to" rib and the right lung. I should have left well enough alone and stay on this protocol I had setup for myself.  No...but I had to go and change everything and within one month...

6,7,8,9  06/08  Recurrence right and left axilla, right and left superclavicular and higher up on my neck. Also area by rib and lung grow larger.

1. 10. 06/08 Later in the month... recurrence of inflammatory a 2^nd time and much worst than the first time.

So right now of have 7 different places and also inflammatory.  Has anyone every spoke to anyone like me? Met but not bones or organs?

I still can't believe how I have been living for the past 2 ½ years.  I have worked pretty much full time through all of this.  I have the most terrific boss in the WORLD!  I have been blessed by God not to have everything happen that my doctor's predicted for me.  That I would live only three to six month's after first mast. I have done 18mth of chemo (not counting this round of chemo) with 7 different kinds of chemo's.  (I chose to repeat Gemzar, carbo and Avastin again because I found it very doable.)

Well there is my story and I'm sticking to it.

This is a great idea so we can all see where we have been and how we are doing.

Sept 1990 dx with Insitu Carcinoma, no nodes involved-Lumpectomy and 35 rads treatment.

Oct 2000 dx with Insitu Carcinoma in the Opposite breast, Lumpectomy and 35 rads..

five years of Tamoxifin

Then in Aug of 2007 I fell and broke my L3 Vertabrae, more pain than I will ever want to remember. Scans showed Malignant tumore to the vertabrae which the determined was mets from the bc...Was just about to get to feeling normal, then fell and broke my shoulder in May and have been dealing with that since then,, Still in  PT and hopefully next week will be the last week, I hope.. Thats my bc history in a nut shell..Now I have to haver bone scan and pet scan every 6 months for at least 2 years the doc said. I am on monthly treatments of Zometa and daily Arimidex.. Major Hot flashes are happening...

Delorisann