How about we all check-in: mini roll call

With 300 members, we loose track of our cyber friends but still care about them. Why not check-in and just touch base.

I'll start; Al, Linda's husband. Linda just got ultra-sound results today which were somewhat disappointing. Diffuse disease through-out her liver. Is diffuse disease better than many solis tumours? They finally agreed with us and want her to have a CT scan instead of the ultrasound to see what's really going on. That happens beginning of next month. Linda just finished her first cycle of Xeloda with no real side effects. She will be re-assessed in September and taking the xeloda at least until then.
Al

I'm Eric, Caryn's husband. Caryn (42) was diagnosed stage IV with spots in lungs and liver in July. Was declared NED in January after reacting well to Gemzar, Herceptin and Zometa (preventative), Currently on maintenance herceptin (weekly) and Zometa (monthly) and recovering from reconstructive surgery less than 2 weeks ago. Looking into vaccine trial.

Warmest regards,
Eric

[Rozebud]

Al, sorry to hear about Linda. Keeping her in my prayers.

I'm Rose. Story listed below. Finishing my 1 year of herceptin in May (yikes....I wish I could stay on!) Heading to NOL for an SGAP also in May. Hmm....May is a big month! I have a 1 year old who is just starting to walk and an almost 3 year old.

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Rose's story:

Dx'd 1/04 at 33, while 33 weeks pregnant (baby devliered at 35 weeks and is now >100% in weight %)!

Dx: Stage IIIC IDC, ER-, PR+ (23%), Her2=2.7, 2.5cm primary tumor, grade III, 11/18+ nodes (largest 3.8 cm)

Treatment: A/C *4, T *4, 1 year of herceptin, mastectomy, rads (7 weeks), tamoxifen and zoladex (5 years)

~*~VISIT OUR FAMILY!~*~

Hi,
I am Annemarie. I am currently NED. I was orginally diagnosed at 32 with Stage 3b, er+/pr+, her2+++. It has been 5 years and i wish I could say they were uneventful years. I have had reoccuring brain mets three times. I am currently on Femara and Lupron and started Herceptin after meeting Christine on this website. I am now on it for 7 months once every three weeks and doing well.

[Lolly]

Hi, I'm Lolly. I'm currently on weekly maintenance Herceptin for Stage IV, and enrolled in the HER2/Herceptin Vaccine trial at UW Seattle. I'll have re-staging scans after the last of six vaccines(this month is #4). So far, so good.

Hello, my name is Joanne, but people call me Jo or JoJo, whichever they prefer, I don't care. I live in California.

My story below:

Diagnosis = May '03, stage 3b (probably 3c in the current guidelines) at age 35, 6cm primary tumor, 17/18+ nodes (just one largest at 1.5cm, the rest all micromets), 40% ER+ / 20% PR+, her2+, grade 3.

Active treatment = neo-adjuvant: AC 4x dose-dence, Taxol 12x weekly, in conjunction of weekly Herceptin (originally intended for one year only).

Surgery = Mastectomy Nov '03; primary tumor completely disappeared; reconstruction delayed, haven't done it yet.

Radiation therapy = Dec '03 thru Jan '04 for 23 treatments (or was it 27?).

Another diagnosis = Recurrence June '04: supra nodes and then just one brain met in July '04, 1st Gamma Knife Aug '04 for brain met.

On Herceptin indefinitely, due to stage 4 status.

Hormonal therapy = Femara in daily pill (recurred), Faslodex by monthly injection (stable for a few months), and now Aromasin in daily pill (stable for now).

My personal note = been stage 4 for almost a year now, actually I don't feel like being stage 4, with just one brain met & supra node. Had the occasional CT scan, always clear in other organs.

BTW, at recurrence diagnosis, I took tumor markers for the first time, my numbers showed in the normal range, so my onc ditched TM's in my case. Maybe I'll ask her in the near future to run them again...

Nice to "meet" you all, although I wish under better circumstances. Oh, here is my email address, if any of you would like to ask me questions or shoot your comments anytime: acrobaticfan@yahoo.com

Hi, this is Lyn from OZ, (Australia) I am currently on a break from radiation to other breast, had 23 and tooooo burnt to keep going to 30 yet, so start back on Monday. Found novel way of wound dressing of breast, put the burn cream on and then put cling wrap over it, works a treat. Also on daily Xeloda for duration.

Love & Hugs Lyn

Hi - I am Irene from Tampa, Fl.

This is so great that we can "speak" to each other so easily and from so many parts of the world.

I am a 59 yr "young" women diagnosed in 1996 with aggressive breast cancer. Her2/3+.. Estrogen negative. Had mastectomy/reconstruction same time. Ned until 1999--

Recurrence went to liver at which time had a stem cell transplant and was ned until 2001 with tumor popping up in liver again. Treated with various chemo's and ned until 2003 when again tumor popped up in liver (always the same area) Had RFA to liver in Sept/2003.

Back on chemo and ned for seven months with same recurrence to liver in same spot. At this time we decided to go for broke and have my liver resected with half of the liver removed in July/2004.

Have been off of any chemo since the surgery taking Herceptin weekly since 1999. I just had an MRI of liver and at this time everything looks good. Am having CT and Pet scan tomorrow and again check my tumor markers (which I have checked on monthly basis for my peace of mind)

Feeling great and making lots of plans for this year.

Good luck to everyone out there and God bless.

Irene

Sheila
just turned 53 last week, diag. Stage 1 in 2002, stage IV 2003, on Herceptin q 3 wks, soon to add Xeloda.


Al, I am praying for Linda

Hugs
Sheila

Cindy from New Orleans, here. Dx in December 2002 Stage IV Her2+ mets to spine and lungs. 6cm tumor. Have had just about every chemo drug there is. Lost my hair 3 times. Still have mets in lungs and am on Xeloda hoping the lung mets go away or stablize. During this "journey" I have gotten my series 7 and series 63 brokerage licenses, gotten a promotion and a raise, haven't missed any more work than my co-workers, have continued to run, ride horses, exercise eat right and LIVE. A positive attitude, laughter, prayer and the loving support of my family and friends have kept me going. I'm glad I found this message board. You all are so inspiring to me. My husband and I are going to Paris in a week. Can't wait for "some day"....make hay while you can.

Hi from Maryann on Long Island

Stage IV Inflammatory BC 1/00
Modified Radical Mastectomy - 24nods removed/5+ Her2+
4 Adriomycin/Cytoxin - 4 Taxol
Radiation - 32x
4 & 1/2 years of Tamoxifen

Plural effusion for my 41st birthday
Video-assisted thoracoscopy (VATS) surgery w/pleurodesis 10/04
Relapse - Stage IV Inflammatory BC w/ mets to lung/liver/nodes
Herceptin weekly since October - no end in sight
Taxatiere & Carboplaten three weeks out of the month - hope to switch to once a month soon
Lupron every three months for chemopause
Femara daily

Last scans showed mets to lungs and nodes were gone - mets to liver was half the size. Should be having new scans this month. Hope to dance with NED.

A great idea for checking in!!!

I"m Sandy H. diagnosed in March 01 with IBC stage 111b, bil-mastectomies. Have had 4 recurrences for skin mets. Scans show clean for bone and organs. Currently on topicial Miltex and weekly Herceptin. Sure beats chemo which I have used with most recurrences. Oncologist says I am in remission even thought I have a few skin mets that I drown in the Miltex. I am feeling great and getting ready to go to Lake Tahoe end of month. Anyone in that area posting here??? Hugs, Sandy

Hi I am Sherry and I live in WV. Have BC with mets to liver. Many big solid tumors and small diffuse throughout. Having rough time with chemo, cannot find a chemo my body can withstand. Have fequ. low cts, with many transfusions and many hospitalizations for neutroprenic infections.
However, I' m still standing and I will live to fight another day.
This board is the best.
Sherry

Anna from Edison, NJ.

Diagnosed at 28 yrs old- Jan 2004 with stage 111, ER/PR-, Her2+++, Grade111.
Had mastectomy & radiation.
Had local recurrence while on AC/Taxol. Switched to Carbo/Taxol/herceptin.
Diagnosed with bone mets 2 weeks after finishing chemo.
Currently on zometa/herceptin/navelbine.
Recent bone scan revealed lesions growing in size and intensity.
Might need to change chemo again.

But still alive, and fighting. Reading your stories has been truly inspiring. Hoping just like all of you, to one day be 'NED'.

Thinking and praying with you,
Anna

Hi everyone, I'm Audrey checking in: diagnosed in July 2001, Stage 3.. ER-, Her2+, large tumor, 11+ nodes. Treated with A/C, weekly Taxol, radiation and one year of Herceptin. Finished Herceptin in March 2003 and remain NED! I keep reading this website to see how everyone is doing and to keep current with the latest info.--still don't feel like I've put this disease behind me. I live in Ohio with my husband and young son & daughter. I met a dear friend, Michele, on this site and we are traveling to Savannah in June with our Moms and young daughters to visit and celebrate our 40th birthdays! Something about having cancer really brings out the urge to travel, doesn't it? Anyway, I feel such a sisterhood with all of you because I know you share my same basic fears, hopes and dreams. I also want to thank all the husbands/care givers out there who contribute so much to this site!

What a great idea, Al! I am Tricia from Arizona and give a little of my story in answer to Cathy B. a few lines down from here. I was a young and active 56 when first diagnosed with BC in 1985. My younger sister died from it that same year. I had a double mastectomy, nothing more then. It slowed me down enough to finish my PhD dissertation in psychology. My husband, a psychologist, and I continued in private practice, especially doing marriage enrichment type weekends for couples and family counseling for 5 years, when the cancer showed up in my spine in 1990. No chemo, just tamoxifen, lots of prayer and alternative things. Took time to write a book on marital intimacy with my husband. Cancer in remission, we retired and moved to northern Az., wound up not retiring after all. June 30 of this past year I had a heart attack and in preparing for bypass surgery (which hasn't happened yet), a CT discovered cancer mets to the lungs, 14 years after the last met in 1990. I am doing quite well as I said in the post to CathyB., am now a young 75, not as active as I wish now, but still fighting and very positive, and enjoying life fully, including our very large family of 9 children, 32 grands and 27 greatgrands! We did have to move out of the mountains and back to the desert because of the altitude. The cancer seems to be shrinking after 6 months on navelbine & herceptin, plus femara, now just herceptin & femara. I love this website and am so grateful for all I've learned here to feel in control of the situation. I am so glad to "meet" you all and your stories have truly inspired me. My prayers and best wishes go out to all of you! Tricia

My name is Karen and I'm from Rhode Island. I was diagnosed Feb. 2002;Stage 3, 1 node, ER/PR-, HER2+++. Did AC/Taxol and radiation and 7 months later recurrence to node above collar bone. Herceptin/Navelbine for one year and am now doing Herceptin every three weeks for maintenance. With fingers crossed, have been NED for over a year.

Thanks, Al. Great idea. So sorry to hear about LInda's latest.

I'm Lisa from Colorado. Now on weekly chemo, Herceptin tri-weekly and Zometa monthly. Doing good, but tumor markers are high and climbing. We know there's a new liver spot, but for now we're staying on course and waiting.

Love and light to all,

Lisa

I put all my updates on my website. Here is the link:
http://www.geocities.com/vpfeiffer@s...l.net/val.html

Hope you're all doing well today :-)

Val

[StephN]

Hello All -
This is a good way to get quick updates on some of the members.
Guess Cindy and I will be sipping our wine at a cafe in Paris around the same time. She may be leaving just ahead of us by the sound if it.

I am Stephanie and I have been fighting aggressive BC for over 4.5 years. I have had mets to liver and brain. Fought the numerous and large mets out of my liver with some hard chemo and Herceptin. Brain mets revealed this Jan by annual MRI. Gamma Knife radiosurgery on Jan 18. Last MRI was good and I have my second followup this MOnday.

Having pulmonary functions and chest CT tomorrow to try to run down the cause of my shortness of breath and tightness in my chest. Got 3 docs on it now.

I do work out 3-4 times a week and can't seem to progress much on the machines like I should. But my legs are getting stronger in anticipation of the walking I will be doing in France.

We just keep sharing our trials, tribulations and good news. My friend had good news this week. She will stay on Falsodex and Herceptin as it seems to have kept her disease at bay and her latest tumor/lymph node seems to be inactive. So many of us are able to "maintain" and live a full life.