How about we all check-in: mini roll call

Dear Al and all
Good idea - I always wonder how others are going . Wondering about Carol and velva as haven't seen there posts lately.
I am recovering from the shock of no ovarian mets- just normal cyclical activity ( it is never normal for me). So feeling quite happy. Have just had another primary removed from left breast and mastectomy and sentinel node thingy. Sentinel node was positive so went back in for axillary. Am home and back at work ( with my friendly drainage tube). Go to onc next week to see what chemo he has for me and probably radiation. I was very intersted in Sandy H 's use of miltex to treat skin mets. I would like to try this as I still have a few floating round on my chest doing nothing but buggin me. Sandy - could you please email me with info about how you treat yours. thanks
love Linda

Dear Sweet Al...you are always thinking...and what a nice, nice idea this roll call is....It is so comforting to know that all of us can contact each other literally at the touch of a few buttons.
First of all, Al, please tell Linda that we all are thinking of her ... a reoccurance is so difficult for even the most "seasoned"...I will hold her up in prayers tonight.
My story..I am from Connecticut...I am now 48 years old...First dx of Stage 0 in 2001...3 lumpectomy's to get clean margins...then radiation...a reoccurance in 4/2004...lumpectomy and follow up scans showed multiple tumors on all 4 lobes of my lungs...have had herceptin/navelbine...now maintenance herceptin...and I am enrolled in the breast cancer vaccine trial in Seattle....
I am married; no longer working, have 4 children ages 10 - 19 (2 boys, 2 girls)...busy with teen age troubles...I am sure you all are familiar with that...! and I am so grateful for the adult company on this site...thank you again Al for this roll call!
Love Kim

[Isabelle]

I am Isabelle in CT. I am happy to be turning 45 this month.

I have a long story because I have been living a pretty normal life now for 6 years with various treatments to keep me going. I just finished Whole Brain Radiation and I am waiting for my next MRI of my brain and cat scans of my body which will happen in May. Here is my story:

5/1999, age 39, diagnosed with infiltrating ductal carcinoma. Found by me after nursing 3rd child. Confirmed in mammogram.
First Treatments all 1999: Mastectomy of right breast. 20/36 nodes positive. ER+ and Fish +++.
Chemo started 7/99. A trial at Yale Univ. dose intense, higher dose chemo. (not stem cell support, just neupogen). \ Biweekly, high doses of one drug at a time. A then T then C.
Radiation of chest wall and axillary area for 25 days.
Jan 1999 - Oct. 2002 Tamoxfen for almost 3 years in remission.

10/ 2002 bone mets found after months of rising tumor markers.
Treated with Aromasin and Zoladex. BUT, found not to be postmenopausal even of zoladex. Ovaries removed 7/03 continued on Aromasin.

2/2004 Cancer progressed into more bones and liver possible lung nodule. Started Herceptin and Navelbine weekly. Zometa monthly. Tumor markers fell to almost normal. Liver spot gone. All things stable, smaller or gone as of Feb 05. Dropping Navelbine ands witching from weekly to herceptin every 3 weeks.

2/2005 Had MRI of brain at my request after reading this website. No real symptoms. 2 mets found in my brain. One tiny on right side, a 2.9 cm tumor on left. 3/2005 WBR radiation for 20 days. May need stereotactic on tumor in brain. Continuing on Herceptin every 3 weeks.

Hi All,

My apologies for not being that active lately, but Joe and I have been swamped with work. I'm getting houseguests from the east coast next week and am then flying back with them and will be visiting my 90 year old aunt and my cousin in Smithtown, LI, NY. I will not return until May 1.

I am still doing great, latest blood work and brain MRI's indicate no recurrance.

Hugs and well wishes to all,
Christine

Hi everyone,
Great idea Al. I am Anne. My mom was dx with 3.5 cm IDC 5/19 + nodes, ER/PR-, grade III in 03/04. We have been on the B31 trial with ACT w/ Herceptin for a year ( to finish in Sept). She is having some headaches lately so had a bone scan scare. They found a cyst suspected mets. She will have brain MRI just to check next week. Hope and pray that we will do well. I am also wondering about Janelle whom we haven't heard from in a long time.
Hugs and best wishes to everyone.
Anne
PS: I am a dentist, and will be glad to address any dental questions if you need me to!! email me at saxenachetana@yahoo.com.

Greetings everyone,

Feeling guilty cause I haven't checked in for quite some time. Saw this role call and thought, great idea!

Originally diagnosed Feb. 97, stage IIB. ER less than 10% pos. 5/36 nodes pos. Had 3 cycles of A/C followed by high dose chemo with stem cell rescue, then 6 weeks radiation.

June 2001 CA 15-3 48.2 so waited a month then repeated markers. I was totally out to lunch at this time and didn't follow up with tests assuming no news was good news. Finally called for results and found markers nearly at 80! Took forever to get scans and didn't actually get started on treatment until 9/27/01! By that time my markers were off the charts and I had mets throughout my liver. Did almost 8 months of Taxotere and Herceptin at which time mets had all but disappeared. Decided to have liver resection in November 2002 to remove remaining spot, because I could not continue on with anymore chemo.

Markers started rising again in April 2003, so this time I wasn't going to fart around and started Xeloda as a preventative, even though we didn't see anything on scans. Had a severe reaction to Xeloda that landed me in the hospital . My body couldn't metabolize the drug and it built to toxic levels and almost killed me. Was almost like going through the stem cell procedure again! Anyway maybe it was a blessing in disguise, because I have been NED ever since!

In Dec I finished the Her2 Vaccine Trial at the U. of Washington and so far everything is going well.

I am still getting my Herceptin every 3 weeks and I watch my Tumor markers closely. My CA 15-3 seems to hover around 18-21.

I certainly don't feel like stage 4 and have even decided to take up endurance riding!

My Prayers and best wishes to all of you, Kim in CA.

P.S. If I can ever answer questions for any of you please feel free to email me. kckhud@sonic.net

Mickey from Portland, OR. Original diag. stage II , 2002. Recurrance stage IV, 15mm tumor lungs, 3 nodes, 5mm brain. Gamma Knife to the brain, gone. Nodes, gone, 7 mm left in lung as of Jan. New scan due and I hope NED. Will finish Carbo, taxotere in about a month and probably keep on herceptin. I wish I could find someone longterm remission after this combo. Haven't found one yet. Awaiting vaccine for all of us.
Mickey

Hi, this is Lola. I have been on Herceptin alone now for a year and no recurrence WooHoo!! I initially got BC Aug. 2000, Recurrence to lymph nodes in neck and chest Dec. 2002. Lots of chemo and rads, mastechtomy.
Rarely does it happen, but because of A/C I now have developed MDS, myleodysplastic syndrome, a bone marrow failure disease, therapy-induced. It progresses to acute myleoid leukemia. It is a terrible thing when therapy that kept you alive with one disease (BC) causes another disease.
Will be looking into a bone marrow transplant with a MDS specialist in Seattle. BMT's often have the affect of kicking up latent cancer cells so I could have a relapse of BC after fighting off MDS. Someone has to come up with a better way to cure cancer!!!
I have a new MDS forum now that divides my time , but you are still on my heart.
This group has literally been my lifeline. I might get to meet Steph in Seattle this week end. Would love to meet you all!

Hi, I'm Sandie from Illinois.

I was diagnosed in 2000 with stage 2 tumor. Had a lumpectomy. Tumor HER2++, er/pr -. No node involvement. Had A/C then 6 weeks of radiation.

Felt great and didn't keep up with follow-ups as often as I should have. Diagnosed in 2003 with mets to Lungs - tumor 9 cm. On navelbine/herceptin for a year and hurrah! NED

On triple herceptin every three weeks for 6 months. Again I felt great. But, found out tumor came back again. I've been on navelbine/herceptin now since January. I go for a scan in two weeks. Hopefully, the tumor's shrinking.

I'm a third grade teacher, which has really been a godsend. The children keep me so busy and we have so much fun while working I don't have time to worry about any personal problems. I just wish they could share some of their energy with me.

I love this website. It's great to talk to people who have the same issues. I really appreciate all your advice.

Thanks everyone!

[Patty H]

Hello. this is Patty H. I just started gemzar for lung mets a few weeks ago. Was having some problem adjusting to it. I had no side effects on navelbine but gemzar was making me nausia and flu like symtoms. The Dr. gave me some pre-meds this week and some ativan so now I feel good. Patty H

Hey everyone
I'm Kathy at the great age of 44
I'm stage 4 , mets to spine and brain
Original dx 1998
Recieving weekly Herceptin, Navelbine 2 wks out of the month,Zometa monthly and Lupron every 4 months...I spend a alot of time at the docs!
Gammaknife in July of 2004 which was successful and so I guess everything is under control.
Enjoying everyday like its my last

[michele u]

Hi All! This is Michele U. from Nebraska. I was dx in Aug of 2003. ER/PR neg Her pos. 34 pos nodes. stage 3b. 2 lumpectomies to get clear margins. Took AC x 4 Taxol x 12 then one year of Herceptin and radiation. Finished my Herceptin in march and looking to get into a vaccine trial. Still waiting for them to let me know. Doing well, only by God's grace. I didn't think i would even be here 18 months later, little alone being ned right now. I have found this site a Godsend.

Hello everyone, My name is Claudia and I live in the state of Maine. I was dx with stage IIIB Inflammatory Breast Ca this past July. Iam HER2 + and ER/PR -. I finished tx's March 1st. Every two weeks I received 4 tx's of A/c and 4 tx's of Taxol. Dec. 1st I had a double mastectomy. My margins were clear and 10 lymph nodes removed all were neg. Other breast removed was Atypical hyperplasia DCIS that was a surprise. A month ago I finished 31 tx's of rad. Now I am on a fighting mission with my oncologist to take Herceptin as a preventive. Thank you again for all your replies when I needed info. on taking Herceptin as a preventive. I will keep you posted. Hugs and smiles Claudia

Hi My name is Lorri from Worcester, Mass I 've been following this group for some time now. Your all a great inspiration to me. I'm 45yrs old, diag in Aug 2003 with BC. Neo-adjuvent therapy A/C x4, f/b mastectomy, taxol x4, then radiatiion x36 rx's. 22/26 + nodes, ER/PR-, HER+++. I knew then Herceptin would be my savior! Oct 2004 my greatest fear came true-mets to my liver! All is going well now with marked regression in hepatic lesions. Still on weekly hercetin/navelbine since Nov 2004. Feeling great! I continue to exercise 3-4 times a week, eat lots of fruits and veggies and continue to ENJOY every single day of my life! I tell my self every day " Yesterday's the past, tomorrow's the future, but today is a GIFT. That's why it's called the present." ( The Family Circus Bil Keane).

I've met StephN in Seattle and hope to hug her again soon (Steph are you going to be away from home in early May???)

My home is SE Alaska. Stage I NED. I am feeling apologetic and yet dismayed that my own tendency to still have one foot in denial 3 years after dx is mirrored so clearly by the lack of roll call posting by other HER2+++'s with no recurrence.... yet. I feel this site is too educational for others who are NED not to be here.

I am 54, married to someone special, with strong family history, and am a participant in the Early Detection for Ovarian Cancer clinical trial, as an aunt died of ovarian CA.

Markers have correlated for me all of the way through left lumpectomy, SNB, CAF x 6, rads, 1 3/4 years of tamoxifen (now stopped due to question of tamoxifen/AIb1 interaction for HER2+++'s).

AlaskaAngel

I am from North Carolina. Dx May 2003 at the age of 39 with invasive DCIS. Had left mastectomy, no nodes, PR and ER - but Her2+++. Had 4 rounds of A/C. At this point I am NED. I visit this board at least once a week to keep up with everyone. This site and the stories and support everyone shares has been a blessing in my life.

Hugs to all,
Angela

Hi everyone, I was diagnosed in Nov. 2001 with stage 3b, 16 of 16 pos. nodes, 9cm tumor, er/pr -, her2+++ at age 38. So grateful to say I'm NED at this time. Had 4ac, 4 taxol w/ herceptin and then one year of weekly herceptin and radiation too. I've changed my lifestyle a great deal. Left my husband (toxic relationship) do lots of yoga and eat as well as possible (veggies, fruits, nuts and seeds....mostly organic) I've learned not to take a single breath or day for granted. I now hear the birds and smell the flowers! My best wishes to all.
Margaret

Good timing Al and Linda, the roll-call: to count our blessings at still being here to sign in. It is 5am here in the UK and I've had some quality sleep. Consider myself very fortunate to have have only one 'situation' to cope with: an active posterior fossa tumour (which may be BC mets, but being inoperable, it is academic). Dx- HER2+ with nodal involvement July 2003. Asked for and received double mastectomy with no chemo or radio. Eighteen months of real quality life and then a heavy pain in the back of the skull. Mid-Jan 2005 MRI shows main tumour and another smaller one. Otherwise NED. Regime: Dexamethasone 4mg daily, (the poison which gives me one more day) Omeprazole (stomach protection),Temazepam for sleep, Neurontin SP (Gabapentin) to smooth the ride, paroxetine for emotional stability, oxycodone hydrocloride for feeling less pressure build-up and/or pain (erratic results), lots of good humour, travel, family, friends, support, email, buying larger and larger clothes at thrift shops, giving away, passing along, LOVING, TRUSTING THE PROCESS, LEARNING, and lots of chocolate, coffee, cake, cigarettes (I know, I know, but honesty is a principle with me). I am grateful for what I have got, AND for what I have not got in my life and I wouldn't trade places. I avoid doctors and hospitals and stick to the MacMillan nurse, the local cancer support centre (where both my husband and I get emotional support we need and in my case starting hypnotherapy next week), the community nurse who sees to it that my needs are met as they reveal themselves. Probably the most challenging aspect of the situation now is that it is changing so rapidly, within the day now. Keeping emotionally balanced and spiritually centred in the moment is enough work for me; not slipping into self-centredness, which is constantly tempting. Finding out who I am, what I can do and what I can't, which changes within the day. It is just part of my journey and the journey of those in my circle. It is a journey of love and wholeness. So I salute you all with respect. Erika (p.s. hope you got the attached photo; I can't see it from here.)

[Kim in DC]

Hi everyone!

I may not write often but I read everyday! I am still in the middle of radiation. The big question now is how long to stay on herceptin before I enter the vaccine trial. I'm waiting for Dr. Peoples from Walter Reed to get back to me.

Praying for us all!!!

Kim

Hi, I am Velva from OK dx in 99, Stage IV currently receiving Herceptin weekly and Carboplatin & Gemzar every 3 weeks. Just returned from M.D. A nderson for 5 month ckeckup. MRI (brain) was clear (post crainiotomy of cerebellar tumor). Good idea Al for the roll call!