How about we all check-in: mini roll call

Hi Al,
Thanks for keeping tabs on us. I lurk mostly... tired alot these days. Just got back from a week in Florida (Mich native here) and loved it. Start my Nabelbine back up on Wednesday to fight the pesky liver mets.... Christine named a few drugs that I will talk to the dr about. Have a blood clot in a vein in the stomach and that has caused some concern, but can't do anything about it... or so they say. Hope all is well with everyone and I'll be lurking out there.

Hugs,
Janelle

I'm Esther, Age 43, first diagnosed with BC Jan 2002. ER+, PR+ Her2+++. Treated with A/C & Taxol.

Diagnosed with mets Feb 2004, bone and liver. Liver completely covered in tumors, skin and eyes were yellow. Onc told his nurses he wasn't sure if he'd see me walking through his door again.

Began treatment with Navelbine, Xeloda and Herceptin. Bone mets went NED Aug. 2004. Liver almost completely clear of tumors.

April 2005 began a maintenance regimen of Herceptin every 3 weeks.

Snow skiid 23 days this winter, am gearing up for water skiing all this summer. Traveled to Cancun July 2004, 12 day cruise to Hawaii Sept 2004. Am really enjoying life with a great quality of life.

Hi, I'm Judie from Maryland...I'm not her2 positive but love the knowlege on this board. I have been on a clinical trial for 15 months of avastin and taxol. I will be have a ct scan in two weeks and if I'm still stable will continue on this trial...I have been so gratefull as this trial has been so do-able...here's the rest if your interested

warmly,

judiek

History

Discovered lump Sept. 2002 (mammo didn’t pick it up)
Dx Oct 2002-just turned 41
IDC and pagets disease, stage 2B, grade 3/3, nottingham scale 9/9
3cm, lumpectomy,clean margins
er/pr-pos, her2 neg, 2/25 nodes w/cancer
Nov 2002-March 2003-FEC (5fu, epirubicin, cytoxen)
March 2003- started tamoxifen
May 2003- finished rads (33tx)
June 2003-CT/PET Scan- clear
Started 3 month check ups w/lab
Dec 2003-complete hysterectomy
Jan 2004-extensive mets, both lungs & liver(labs normal)
Jan -stopped tamoxifen
Feb CEA-23 (0-3 normal) CA27.29-66.1 (0-38 normal)
Feb 23to current-clinical trial, taxol & avastin
April 15th, -CT-significant shrinkage on all tumors/plueral effusion gone
June 8th -CT-all liver lesions decreased in size/lung mets gone
Aug 9th, -CA27.29 is 22.3, CEA is .8)
Aug 9th, 2004-Brain-CT neg, lung mets/pleural effusion still gone, liver mets had slight shrinkage. Largest hypodesne lesion is 2.1cm, 6 others 1cm or less.
Sept 13th-bone scan negative, mri revealed herniated disc.
Sept 27- Ct of brain, negative/lung mets still gone/ 2 liver lesions gone, 4 under 1cm, 1 @1.7cm.
Nov 29-CT shows stable, lungs still clear, liver tumors stable
Jan 11, 2005-CA27.29 23 / CEA 2.9
Jan 18th, Ct shows disease is still stable
Jan 27th, Brain MRI negative
Feb 8th, -CA27.29 is 22.1 / CEA 3.7
Mar 28th, -CA27.29 is 22.8 / CEA 4.8 (still rising)

Hi I'm Sally from Saratoga Springs New York. I was dx in March 2004 Stage IV ER+ PR+ Her2+++. 8/16 nodes positive and mets to the liver. I had Taxotere/Carbo/Herceptin for 4 months then 33radiation treatments. Currently on Femara, Lupron and Herceptin. Getting my ovaries taken out to avoid the Lupron. I love reading on this board. It is something I look forward to every day. Thank you for all the support.

Hello Al and everyone!

It's Pauline here, from Perth, Australia. Diagnosed in December 2003 and had mastectomy and reconstruction in January 2004. 2cm tumour, no nodes involved, but HER2/neu so on with the chemo (AC and Taxotere). Also got on the Herceptin trial for early breast cancer. So far- so good.

Have 3 more blasts of Herceptin to go and then in July Charlie and I are off for an extended tour of the romantic cities of Europe! It's the silver wedding anniversary trip we missed out on last year because I was 'otherwise engaged'! Also a big family reunion in Holland for my mother in laws 80th!

Love to you all and thanks for sharing so much, especially as I feel I get much more out of the board than I am able to put in. I'm looking forward to reading all your posts for many years to come!!!

Al-all the very best to Linda and thanks to you for putting so much into this site.

Happy days!!

Love
Pauline

I've told myself that I will put aside some time on the weekend to look over all these replies...I often think of the many women on this site and wonder how they are doing. I haven't posted much lately, but I've certainly been reading.
My sister is no longer on chemo for the moment. She had a most difficult time with Navelbine..severe ab pain. Xeloda proved to be no better as she had severe diarreha and peeling of the skin in her mouth. My parents and my other sister took her to Florida for 3 weeks...was a good place to help in the recovery from her brain radiation. She's still week and losing so much weight. It's been 2 months (almost since radiation). Is this normal?
The last scan indicated reduction in her liver and bone tumors...she continues to have Herceptin every three weeks. Doctors have ordered another battery of tests to see how things are going, especially since she's had no chemo for over a month now. If things remain stable, she will continue with herceptin; if things have progressed, she will try Xeloda again..on a lower dose.
She still remains positive, as we all do.

Hi Everyone,

I was dx March of '03 with stage IIIa bc, 8cm tumor, 1+ node, ER-, PR+, HER2+. I had mastectomy and then entered a trial getting 4x AC/every 3 wks, then 12x Taxol with Herceptin/wkly, then wkly Herceptin x40. (also radiation x30). Was on Tamoxifen for 13 months and menopausal so switched to Arimidex. Period came back 2 months later and kept coming so now I'm back on Tamoxifen and scheduling an oopherectomy. I was diagnosed with osteoporosis (-3 spine) after chemo. Started on Fosamax, calcium supp. and exercise. 1 year follow up DEXA now shows in the range of osteopenia (-1.5)! Just had 9 month checkup, all is well. Tumor marker is 12, the lowest it's ever been.

I did speak to my oncologist about vaccine trials and he thought it might not be a bad idea. Anyone know about trials that I might qualify for? I haven't yet started looking.

Thank you one and all for the knowledge presented here and the support. You are all great, thanks!

Susan

Susan,
There are several trials presently being conducted. It all depends on where you live and how far that you are willing to travel.

Hugs and well wishes,
Christine

GOOD FOR YOU.THIS IS ALL NEW TO ME.I AM SO AFRAID.5/6/04 I WAS DIAGNOISED STAGE 3B ///27 POSITIVE NODES.I HAVE BEEN ON HER CEPTIN FOR 3 MONTHS.HAD CHEMO, SURGERY,RADIATION.ETC.I AM AFRAID I AM GOING TO DIE.DOES ANYONE FEAR THIS DAILY??I AM NOT LIVING A GOOD LIFE AS I AM IN A PANIC STATE WAITING FOR A REACURRENCE.HAD A 3 MONTH SCAN,NEGATIVE .NOW THE WAIT BEGINS AND EVERY PAIN SCARES ME SO.PLEASE SOMEONE WRITE OR CALL,LYNNE

GOOD FOR YOU.THIS IS ALL NEW TO ME.I AM SO AFRAID.5/6/04 I WAS DIAGNOISED STAGE 3B ///27 POSITIVE NODES.I HAVE BEEN ON HER CEPTIN FOR 3 MONTHS.HAD CHEMO, SURGERY,RADIATION.ETC.I AM AFRAID I AM GOING TO DIE.DOES ANYONE FEAR THIS DAILY??I AM NOT LIVING A GOOD LIFE AS I AM IN A PANIC STATE WAITING FOR A REACURRENCE.HAD A 3 MONTH SCAN,NEGATIVE .NOW THE WAIT BEGINS AND EVERY PAIN SCARES ME SO.PLEASE SOMEONE WRITE OR CALL,LYNNE

THANK YOU FOR YOUR STORY .THIS IS MY FIRST TIME ON THIS SITE AND THE FIRST TIME I FEEL ANY HOPE.I HAVE 4 KIDS AND WILL BE 50 IN 6 WEEKS.STAGE 3 B ALL THE USUAL STORY OF TREATMENT.ON HERCEPTIN 3 MONTHS.WILL I EVER STOP THINKING I AM GOING TO DIE SOON?27 POSITIVE NODES AFTER A 5CM TUMOR SHRUNK AND I HAD THE SURGERY.PLEASE WRITE.LYNNE

HOW DID YOU SET UP SUCH A L;OVELY SITE?YOUR PHOTO IS SWEET AND I WOULD LOVE TO TALK.LYNNE

JO,JO I WOULD LOVE TO CHAT.I AM SAD TO MEET UNDER THESE TIMES BUT REALLY WOULD LOVE TO REACH OUT TO THOSE THAT UNDER STAND THIS HELL AND ALL THE FEAR THAT GOES WITH THIS DISEASE.LYNNE

I TOO,GET A LITTLE HEADACHE AND LOTS OF FATIGUE.I WORRY ABOUT THE BRAIN INVOLVEMENT AS I HAVE HAD PET SCANS AND I DO NOT THINK THEY SHOW THE BRAIN.I WONDER IF I AM JUST PARANOID.I FEEL FORGETFUL AND DEPRESSED.NOT MYSELF AT ALL.MY STORY IS ON THE SITE.PLEASE WRITE////LYNNE

[Lolly]

Hi Lynne; You're concerns are a common thread that runs through our "conversations" here. We all struggle with the day-to-day task of trying to live with cancer while maintaining hope and love of life. It isn't easy, and sometimes it all seems overwhelming, doesn't it. Are you on any medication for depression? Some of us, myself included, have found the new SSRI's very helpful. That you're getting Herceptin now is excellent, so just try to stay tuned in to your symptoms, and if the headaches are worrying you, INSIST on a Brain MRI, as that is the most definitive scan for diagnosing brain mets. If you've read the posts from some of our brain mets survivors, including Christine, our founder, you know that early detection is the key to managing this complication.
So welcome, and know you're among friends.

<3,
Lolly

Hi all...I'm Judy from Indianapolis. DX 6/03. 3 cm, stage III, er/pr - , 8 of 16 nodes positive. I just finished 52 weeks of herceptin off label. Was set free to fly on my own the first week of March. Scarey but so far so good and I'm feeling great. Just got back from a 2 week vacation to Charleston and Savannah...gorgeous! The first time I've gotten out of Dodge for 2 weeks in 2 years. Hope there are many more to come:-) Just found out I'm going to be a grandma for the very first time!!! Lots to live for!!!

[Cathy W]

Cathy W from NH. I don't post here much anymore. Too busy living and fighting my disease. I'm currently doing Navelbine, Herceptin, and zomeda. I have mets to lungs, liver, bones and pluera. I am still pretty active, working and raising a family. I'm just really, really tired all the time.

Hi: I'm Linda in Calif. Haven't been checking in lately...I've been in a sad mood since Mary in Teirrasanta's memorial service and just been laying low. I'm still dancing my dance with NED...hope he doesn't let me down any time in the near future. My Mom, who had a reoccurance after 13 years is having great results with just Femara. Take Care, Linda in Calif.

Hi everyone.... I have posted here in the past, but it has been a while.... I still read the posts a few times a week. There was another Lauren who posted (she used a small l) and it got really confusing.

I was dx at age 33 on Dec 6 2002, 1.5cm tumor 1+ node (of 23), er/pr+ her2+. I had lumpectomy, 4 A/C, 4 taxotere and 15 months of herceptin. Also had rads, including collarbone, get lupron shots and take arimidex.

I've had several scares but all have turned out to be benign and I am still doing well.

I've enjoyed reading this board and have learned so much for all the wonderful and couragous women here.

Love and hugs,
Lauren H

Hi All

Checking in. I have been on xeloda for 12 days now 2000mg in the morning and 2000mg at night, so far minimal side effects, nausea, slight tingling in fingers and toes.

I have filled in the online LBBC survey, it was a lot easier than I expected.

Will hopefully be going home to Scotland for a week or 2 have pencilled in for July at the moment but might go before that.

I keep reading the letters every so often but don't always log in.

Love Marjorie (Worksop UK)