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

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 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)

Dx'd in 3/01
--3 types of aggressive b.c. -- pleomorphic invasive lobular, IBC (separate tumor in nipple with extensive comedo necrosis, and high grade dcis with extensive comedo necrosis--9 mos. after supposed normal mammogram; 9/12 pos. nodes, extracapsular spread, extensive lymphovascular invasion
--TX bilateral mastectomy, 4 AC, 5 weeks radiation, 2 Taxol, 2 Taxotere along with weekly Herceptin for a year. Then 2 mos. after last taxane, started on Arimidex. 18 mos. after mastectomy had complete abdominal hysterectomy and salpingo oopherectomy. One month later started on 100 mg/Celebrex--twice/day. 2 mos. later started on 200 mg/Celebrex twice/day. One month later started on prophylacitc Doxycycline twice/day. One month later had first Zometa for osteoporosis prevention. 6 mos. later had 2nd Zometa. Then I also began Lovastatin a month after that. 2 mos. later I began having Zometa every 3 mos. and also doubled Celebrex to 800 mg./day

Diagnosed 2/04 (41) Stage I no nodes ER/PR+ HER 2+ 2.7 Chemo, 33 rads, Herceptin for a year. Finished Herceptin 03/05. Tamoxifen for 5 years.
Cancer has changed my life...for the better most days. I gain strength on down days from the women and men on this board. Thank you!

Great idea, Al. Thanks for thinking of it.

I have had to wait for a bit to give my latest "status". My NED status lastest about 3 months (it was WONDERFUL!)

Right now I am on Cytoxan (pill form) and Xeloda for recurrence of skin mets. I take one week of Cytoxan, then one week with Xeloda and Cytoxan and then the third week just Xeloda. Then I start all over with Cytoxan. My Onc. is hoping to get the skin mets under control again.

I was 40 years old at dx. Stage 2A, one node pos, Her2+++, ER-PR-. Did ACT and 30 rads, then 1 year of Herceptin with trial. Completed in 11/03. Recurrence to ancillary lymphs in 5/04. Surgery to remove the 3 addl lymphs. Then 3 months of Navelbine and Herceptin. Skin Mets confirmed in October 2004. 10 weeks of daily Hyperthermia radiation and 1000mg of Xeloda for skin mets. Dec and Feb. 2005 Pet scans clear, NED. New rash appeared in late March and confirmed by biopsy. Another PET scan on 4/11/05 and luckily ca is in skin only (no lymphs or other organs).

Just started my new treatment plan last week. Hoping that like every chemo I try, this one will do the trick and get it in remission. If so, Onc is looking into Vaccine trial. First have to get to NED again.

Busy working and being a Mom of 3 teenage boys and of course, must remember, busy FIGHTING cancer - like many on this web site.

God Bless everyone at this site. So many of the women here have been my inspiration, so many times. Thank you all for the tremendous amount of information and wisdom that is shared.

Cindi.

It has been a while since I have posted anything. This is a great idea Al to try to get to know our fellow members.

I live in Georgia, have 3 kids and a wonderful husband who is very supportive.

I have always been involved with charity work and after diagnosis became very involved in my area with breast cancer concerns. I felt that I personally needed a support group with younger women that have been diagnosed with breast cancer (and felt maybe other ladies needed it too) so we got one started; co-wrote a play about dealing with a cancer diagnosis and the many aspects of how cancer changes your life into a more meaningful one (the play has been performed in local towns and will go national this year!). I also went to Washington DC to lobby congress on payment reform (insurance concerns) for the underprivedged and now am training for the Avon Breast Cancer Walk in DC in 2 weeks. OK, I sound crazy don't I? I am still involved with speaking about BC but mainly my passion is for the underprivedged who don't get screened early and don't have insurance.

I was diagnosed in 6/03 while nursing my daughter; 3 cm IDC, 10+/16 nodes, ER/PR-; HER2 3+; 36 years old. My treatment included dose dense A/C; then modified radical mast. on right; then 12 weekly taxol/herceptin combos followed by 28 rads and 40 more weeks of herceptin. Took Herceptin off-label and ended year in 8/04. I looked into clinical trials with vaccines then backed off the further out I got from treatments. I am thinking about reconstruction now but am still undecided if I want to feel bad even for a day if I don't have to! My Dr recently put me on 6 month visits and I truly feel that the Herceptin helped do the trick. I changed my eating habits and am a firm believer in yoga, taking supplements and juicing. I know that my risk of recurrence is high but I also feel that I have got to live every moment that I am here. I've done things I always wanted to do and music to my ears is when one of the boys says to me "Mommy, you are SO MUCH FUN!" My daughter is now 2 1/2 and I can't think of a better time to be alive. Whether your living with cancer or with the fear of a recurrance it is still great to be here and enjoying what you have.

This site is a great place. I have sent many women here to take a look. When I was going through those hard days & nights you all gave me so much hope. Thank you.

Hi, I am Barbara H. from Newton, MA. I was diagnosed in May, 1998 at age 50 with 9 pos. lymph nodes, ER-,PR-, HER2 pos. Mast. with 4 rounds of CA followed by 4X Taxol. Then radiation. NED until May, 2004. In May of last year stage 4 with a three cm brain tumor, skin, liver, and lung mets, and cancer through out lymph nodes. Surgery for brain met followed by sterotactic clean up surgery. Opted not to have whole brain radiation. Started on herceptin only. Skin mets have disappeared, all tumor markers are normal. Went back to teaching third grade in September. Teaching for me is therapeutic. Since last summer I have tried to stick to eating organic foods as much as possible. Just had my herceptin today (get it every 3 weeks) and my three month MRI. I'm keeping my fingers crossed that the MRI will be OK. I feel fine, but know that is not the determining factor with this disease.
This website gives me super support and my thanks go to all of you who have the courage and take the time to post. I especially thank Joe and Christine for making this website possible.
Best wishes,
Barbara H.

Rose from PA, thanks for all the great information. this helps in sorting out
info that is appropriate for each individual. thanks. again.

Soccermom1955, Ocean Springs Mississippi, DX December 13 2004,Bilateral mast. Stage IIB, 1 node positive ,ER/PR+, Her Neu2 3+,finished AC X4 dose dense , currently on Taxol 4X dose dense. Looking at Herceptin after. Newbie to this Board..Thanks for the bulletins!

Thanks Al. Joy checking in. Dxed 2000 (32 yrs nursing mama) stage 1 er+/pr+ Her 2 neg per IHC, but very angry cells. Had bad "incompletely excised" biopsy. Lumpectomey clean margins, no nodes, no vascular involvement. Redxed in 2002 and given a few months as had a 7x9cm tumor in liver and too many more to count plus some spots in lungs and medistinal nodes. Almost a year of xeloda/ taxotere. Added Herceptin after a couple of months after consulting a specialist who suggested we run FISH on tissue-strongly Her +++. Responded well began Femara with herceptin went off taxotere/xeloda. Continued improvement with hormonals (zolodex/Femara/Aromasin) and herceptin. Now trying to out smart the cancer with my own estrogen as I had a surprise in progression recently(Nov '04-VLED and Feb'05 some liver spots up to cms).

I love this site and all of you.

My ex and I divorced right before stage IV dx and our girls are now almost 9 (WOW) and 6. My prayer is to be an OLD grandma. I am the Complementary Care Program Coordinator for the Lydia Dody Breast Cancer Foundation in Ft. Collins CO. We pay for women in medical tx in Larimer County to receive complementary care treatments e.g. massage, acupuncture, reiki, exercise, yoga, housecleaning, music therapy, counseling etc. We do this during treament and for 6 months after. I also do Cancer Patient Navigation in our county. This is one on one connecting with patients and their families to help guide them to the resources they need most as individuals (financial, complementary care, medical education, research). It is a free service and quite rewarding. We just received a big Komen grant to help the underinsured and underserved population.

I volunteer at my kid's Waldorf school and have a lot of fun.

It's so good to know all of your stories and thank you for being here for me and my family!

With love and gratitude,
Joy

Annemarie,
Great to have you on board. We will get through this. I just heard the news about herceptin, and this is the drug my doctor has been holding out for. I hope this will be an answer for us. Please stay in touch. Love, Hollis

You have been through so much and are doing so well. What a wonderful attitude and so kind of you to share this with all of us. Hollis

You are fighting girl and doing awesome. we must find a cure. I will stay in touch. Hollis

hang in there.. we must find a cure. love , Hollis