Topic: Lets start a Roll Call

Hi, here it goes

Nov 2001- left breast ductal, no nodes stage 2, followed by 4 taxotere and 30 rad tx, tamoxafin. (lumpectomy).

Dec 2004- right breast lubular, (SND)1-4 nodes positive, 6 round of FEC, 1 yr of herceptin,had lumpectomy at that time, but 6 months later, I wanted a double mastectomy, hysterectomy (good thing I did another lump growing 8mm). Did aromasin until now.

June 2008- bone mets & liver, had port inserted and started taxotere, pamidronate(bone builder) and herceptin.  My family and friends and this board keep me strong and I thank you for it.

Bumping up so we dont loose it ....

hugs

oz

IGreat idea, I just started reading posts and was wondering what everyone's story is.

I'm impressed how much everyone can remember.  Gay Gallavan here in Colorful Colorado.

Don't really know what all the abbreviations are, but I'll try my best.

dx4/2005 ILC, huge tumor 20cm.  Port, 4x's chemo - don't remember what, but it was 2 different drugs, left mastectomy and nodes - a lot of them were positive, 4x's different chemo with 2 dfferent drugs one was xeloda, I think. 

11/2005 bone mets, diffuse through thorasic spine.  Tamoxifin and Zometa kept everything contained until

9/2007 CA-27 started going up, change to Femara

11/2007 Node in my neck on left side pops out as well as some  small spots on the chest wall of my mastectomy.

12/2007 Huge tumor in right breast errupts, 15cm onc said she'll never know if this was a spread from the other side(same cancer, almost same size) -or- a new primary cancer. 

1/2008 tumor is again ILC and chemo is started  It was a drug trying to be ok'd by FDA - sounded like something out of Harry Potter 4x's.  My feet were totally fried and it did not work one bit.

4/2008 Started doxil continue with zometa.  Doxil is getting a good  response.  Decided to get a mastectomy over the summer since I'm a teacher and want to start the school year.

7/2008 Right mastectomy, some lymph involment - left it there

I'll be doing one or two more rounds of doxil starting on Aug. 15th. After that I hope the bone and lymph mets will be under control and  I can go back on something like tamoxifin that lets me live with the illusion of not having cancer every day. 

Was 47 when I was diagnosed and am almost ready to celebrate my 51st.  I'm happier than most to have reached my 50's.  God has been good to me everyday of this fight.

bump

Greta,

 I had a mammogram yearly on exactly the same day. Turned out that I had lobular cancer growing undetected for 3 and 1/2 years. It really makes me angry when I hear all the early detection ads.

Had double mastectomy on 12/31/02

Went on TAC Chemo and radiation ended on 6/03

Went on Arimidex for maybe l and 1/2 yrs.

Found a cyst on my neck. The Derm Dr. said routine, not to worry. Turns out he was wrong was mets on 7/25/06

Went on Zometa and Tamoxifin

tumor markers began to rise on 12/07

Turns out I have mets to the bone, Skull, rib, hip and total spine. It was only Lumbar in 3/08, but now it has progressed to total spine. Near spinal canal in one spot.

I was put on Fasolodex and Zometa. 

Obviously that did not work, as then the progression was sceen. Now on Xeloda 4500 mg. 7 days on and 7 days off.

Still getting Zometa as well.

I am having a biopsy of a tumor on my spine, as onc. says that it may no longer be ER/PR+ and we do not know if it is now HER+ as it was not in the past.

I had an elective total hysterectomy and that was clear. I test positive for Pap virus, but really not much left for it to bother.

I have no pain at all. I ride a bike and do Yoga. I just cry when anything else kinks my day. Cannot handle stress at all. I am hoping with all my heart that the Xeloda works. I will have scans in 3 months. and also test tumor markers.

This site has been the best thing I have ever stumbled upon. Everyone here is so helpful, kind and compassionate. It really helps to know I am not alone.

Also went to a nutritionist and I am semi-gluten free. He would like me to be 100%, but I find it difficult and expensive. I also have enzymes and other things. I go back 8/6 and will see if my blood cells have shown any progress. I had a terrible sweet tooth, but I now know that cancer feeds on the energy of sugar, so I have curtailed that about 95%

Thanks ladies, This really is a wonderful idea. Leave it to LuAnn to come up with this great idea. She is there always for each and everyone of us.

Greta

New Jersey

I needed so badly to read all these posts tonight. Thank you all for putting your stories out there for me to read and know that I am not alone in the battle. Here's mine:

1/26/06 the day after my 40th birthday I found a lump in my arm pit.

2/28/06 biopsy dx w/breast cancer in lymph nodes

4/4/06 masectomy w/reconstruction, 15/19 lymph nodes cancerous

4/21/06 - 9/21/06 Cytoxin, Adriamycin, Taxotere

10/06 started Tamoxifen

10/06 - 12/06 Radiation to breast & hidden lymph node (behind rib cage)

7/06 - 7/07 Herceptin

11/07 mets to bone & other lymph nodes. I found this out because my tongue wasn't working properly. I was having trouble chewing & I was talking funny. Turns out there was a small tumor on the base of my skull pushing against the nerve that controls the left side of my tongue!

11/07 Radiation to base of skull - fixes tongue issue, taken off tamoxifen, given Lupron to induce menopause so I can take Arimidex, put back on Herceptin, Aridia for bones

4/08 good pet scan tumors all shrunk

8/08 bad pet scan tumors growing and spreading (2 spots on lung). Got final Herceptin, stopped taking Arimidex

Now awaiting insurance approval for Xeloda & Tykerb (it's been 3 days and I'm really anxious). Hopefully all will be settled by Monday or I'll have to raise a stink.

Thanks for being here.

Randy

Here's my long rambling BC story (sorry it's so long):

January 2001 

Then fiancee (now DH) waits til Saturday morning to tell me that while we were frolicking the night before, he felt a lump in left breast.  Takes my hand and places it right on the tumor... can't believe I never felt it.

Had lumpectomy... no node involvement, 2cm tumor designated Grade 1, Stage 2 (IDC). ER+, PR+ and Her2nu -

March - July 2001

4 rounds of AC followed by six weeks of radiation

September 2002 - December 2002

Suspicious mammogram for both breasts... left side turns out to be nothing but scar tissue from lumpectomy, right side needs surgical lumpectomy/biopsy.  Dx with DCIS on left side but did not get clean margins.  Did BRCA testing which turned out to be negative.  Did second lumpectomy only to find that DCIS is all over breast and need mastectomy.

January 2003

Decided to do double mastectomy with TRAM flap microsurgery reconstruction.  Surgery and recovery SUCKED (15 hours on the table) but plastic surgeon manages to connect tissue successfully even on side with radiation.  Surgeon did a GREAT job and I thought I was DONE forever with BC

December 2003

Feeling great... and then onc (who is old school) decides I should do a CTscan just to make sure everything is good.... well, everything was NOT good.  Spots in lungs and after surgical biopsy, confirmed that I am now Stage IV.

January - February 2004

Consult with oncologists from MD Anderson in TX and Sloan Kettering in NYC.  MDA wants to do most agressive tx (Taxotere) but Sloan agrees with my onc to put me into menopause with Zolodex and go on Femara.

Sloan onc says I won't live 5 years... once I recovered from her careless statement... (I did not ask for prognosis), wrote her a letter telling her how destructive her comments were and that she had to listen better to her patients as to what questions they are asking and what questions she is answering.  She steps up to the plate and calls me with apology.

February 2004 - October 2006

Femara first stabilizes mets and then all go inactive (but leaving scar tissue) except one.  In October of 2005, have last active nodule removed surgically and then NED for one year.  Biopsy of nodule shows change from Her2nu- to strongly Her2nu+ so happy in a way that I would have Herceptin in my arsenal.

October 2006

CTscan shows one lung nodule slightly bigger.  Advised to take a "wait and see" approach to see if it is just in the scan's normal margin of error or really progression.  Well, finally, in March 2007, cancer spreads to my liver so I guess it was not in the "margin of error"

March 2007 - July 2007

Manage to get an appointment with the most wonderful onc in the world (my opinion).  Head of Breast Oncology of Dana-Farber Cancer Institute in Boston, MA.  He tells me he expects me to see grandchildren (daughter was 20 at the time... what did he know that I didn't know!!!!) because my cancer is sooooo unagressive.  I feel great about hearing that.  However, he is suspicious that I should go from Her2nu- to such a strong positive so demands retesting of my cells and he is right... only slight positivity.  Puts me on clinical trial where all get Faslodex and some get Tykerb.  Two months later, tossed from trial as there is progression in the liver (although nominal).  Test unblinded to reveal that I got the Tykerb, not the placebo which was good to know.

July 2007 - January 2008

Boston onc wants me to switch to Sloan Kettering for treatment as he knows all onc's there and they work well together.  I tell him about bad consultation with Sloan and he actually wants me to use the same onc there as gave me 5 years to live.  After lots of thought and only because I trust Boston onc so much, I agree and switch to Dr. Evil and go on Xeloda.

Xeloda gave me no side effects but DID NOT WORK.  Time for Taxol/Avastin.  After several infusions, get bill from Sloan showing what was covered by insurance and what was not.  Immediately leave Sloan and find onc that is in my plan near where I live and continue with Taxol/Avastin.

Now owe Sloan over $22,000.00 and they will not negotiate anything that I can afford to pay so i am letting them sue me but they will never collect 'cause I own NOTHING and can pay most of my expenses thru my business which they cannot touch.  F#$%k them if they will not work with me.  I hate Sloan-Kettering as I was nothing but a number and a profit center.

Love new local onc and get good report on Taxol/Avastin.  30 - 40% reduction of biggest tumors in lung and liver, and all else stable. 

April 2008 - present

Get scan in April and Taxol/Avastin no longer working.  No one wants to put me on another chemo so fast as I am completely asymptomatic and work full-time so I suggest another Aromatase Inhibitor... Aromasin and both onc's think it is a good idea.

Well, as I posted separately, I will not be continuing to make tx recommendations for myself or anyone else as worst progression yet.

Just came back from seeing Boston onc who is now slightly less optimistic about my "unagressive" mets but says my own body seems to be my best defense as most people would not still be totally asymptomatic at this stage.  He was going to recommend Doxil but changes his mind when I reveal that I have never been on Tamoxifen.  Now on Tamoxifen and also scared straight as to eating and exercising (doing both right now) and hoping for the best.

Also, onc tells me that the lungs are not my problem (says not much happening in them and have full lung capacity) but rather the liver is most worrisome.  He's pleased to know that most recent liver function test is completely normal and wants me to have them done every four weeks instead of six weeks, as I've done in the past.

DH taking me on my dream vaca in early November.... cruise from Barcelona through Italy and Greek Isles... but bought TRAVEL INSURANCE in case of whatever!!

I am almost 5 years out from mets dx and looking forward to writing Sloan onc another letter letting her know that she was WRONG!!!!  Very surreal to feel so well but be so sick.

Sorry for the long rambling post.

Robin

sorry, "playing god" Mary

bumping up

I thought I saw this thread. 

Ok - dx Aug07 Stage IV - right off the bat

Did mammos yearly and everything,  anyway mostly from memory here.

Breast, bones, Liver - ER+/PR+/HER2- Grade 1

Femara Sept 07 Trial - Denosumab/Zometa - (double blind study)

Bones 'resolved' Jan08 

Lump - March 08  - didn't get it all 

Mast - May 08  - gone gone gone

Liver - Sizes half the size from discovery

Rad - June 08

Tumor markers down to 47 from start of 97.

I'm gonna get of this BS disease and so are all of us.  They have to be close. 

Sept08 LIVING THE LIVE

God bless

September 2008

DX June 2007 Right IDC 4cm Stage IIb ,two weeks later 8cm, Triple Neg

July to Oct 2007 - 6 cycles Taxotere/Adriamycin/Cytoxin

Nov 07 - Right mastectomy, clear margins, 9/14 nodes positive

Jan - March 08 - 33 radiation treatments

July 08 - blood work shows no TM

Aug 08 - mammogram - left breast - Neg, bone scan - neg, chest x-ray - "something funky"

Aug 08 - CT Scan and lung biopsy - bilateral lung mets , 3.2cm, 2.5cm, 6 x 1.9cm (good thing I can read upside down)

Sept 08- port placement, beginning Avastin/Navelbine

So sorry Steve to hear about the return of Pam's bc.  It is always such a shock to find that it has returned.  I hope the Femara and treatment for the bones are helpful.  I am currently on Zometa for my bones as well as Ixempra. My bc was initially diag. in 1984 so I hesitate to post on this roll call because it might take a day to list everything I have been through since mets in 1998.  Hoping that treatment helps Pam and that she will soon be feeling better.  The ladies on these boards are very knowledgeable and will be a big help and support  to you both.  Kathy

Bump

bumpity bump

Oh, and my onc. and I have decided that I should go back to the tried and true Taxotere. Minus the Avastin this time. I can't get back on the trial since over 60 days have passed, and it probably wouldn't be a good mix w/my blood issues now anyway.

My first (37th) treatment will be next Wednesday, 10/01/08.

Still no port. I might have to have my first treatment w/o it unless they can get me scheduled to have it put in between now and then.

I've never had chemo w/o a port. 

LuAnn this is a great idea, but for me a difficult one since it goes back a long way and I am lucky I can sometimes remember two days ago.  But here goes:

1987 - Initial Dx; Stage I breast ca left side; underwent lumpectomy and radiation; ER, PR+, Her -

1999 - reoccurence left breast, Stage IIIb, positive nodes internal mammary node, underwent left mastectomy with TRAM reconstruction, A/C followed by Taxol, tried Tamoxefen for 6 months, but had to stop due to horrible side effects

January 2008 - Stage IV with extensive mets to bones.  Have undergone 3 months of radiation, Femara and Zometa; bone scan 5/08 showed progression of bone mets, onc stopped femara and started on Doxil and continue on with Zometa.  Repeat bone scan 8/08 shows no progression, Interpretation:  STABLE.  Onc suggests stopping Doxil since no improvement and trying Xeloda.  Going for second opinion in two weeks so for the timebeing I am holding on any treatments.

That's my Story

Hugs to all, Sharon