New role call for stage IVers

[KristinSchwick]

Its been awhile since the last role call for stage IV gals- so please check in and let me (us) know how your doing.

Include how long since your stage IV diagnosis, as well as how you are doing now.

I will start, I was dx'd stage IV in May 2011; 10 months ago now. Mild progression in the bones over the course of 3 different chemo cocktails in the last 10 months. Latest being Herceptin, Tykerb, Femara and Zoladex. Feeling amazing.

[Redwolf8812]

Diagnosed stage IIIc July 2010. Large Tumor in left breast. Large left node. Internal mammary node and sub pectoral node. BRCA2. Started August 2010 taxol and herceptin every week 12 weeks. Developed skin mets on breast towards end of TH. Moved on to epirubicin and cytoxan every two weeks, which completely obliterated the tumor and mets. Surgery pathology - only residual remained in 2 nodes and in lymphovascular. All tumor in breast and skin was gone. Clear margins. Continued with herceptin until November 2011. Was on tykerb also from February to May 2011 - had to stop because of allergic reaction. Rads from February 2011 to April 2011. All docs impressed with pathology and convinced I was cured but now facing liver mets, so what gives.

Still feeling well, praise the Lord! I'm married with 3 children, a son, age 17, and 2 daughters, ages 14 and 8.

[Lori R]

It's been a while since I've posted.

I was diagnosed 4 1/2 years ago. 10/2007. I was stage IV at the time of diagnosis.

Although I've been through 3 rounds of Chemo (bye bye hair), I am able to ski, hike, work, travel enjoy life. (probably more than when I was healthy)

I am wrapping up my 6th cycle of Abraxane (for the 2nd time) and am hoping for a brief chemo break. Scan 2 months ago showed regression on Abraxane.

Staying appreciative for each moment with my family and friends.

Lori

[Lauriesh]

Hi, I was diagnosed July, 2010. I was 43.

I just celebrated my one year NED on Feb 25, 2011.

After 6 months of taxotere/Herceptin, I had rfa for my liver met.

I am now on Herceptin and tykerb.


Laurie

[Delaney]

I went to stage iv in 2010. Will be having radiotherapy to back and then start new weekly chemo fo try to eliminate few new skin mets that have just appeared on chest. this disease loves to surprise us.

[Sheila]

Diagnosed in 2002, Stage 1, then recurred and Stage IV in 2003...just celebrated 10 years, have been in constant treatment since 2003....been on Herceptin 9 years. ( It was not available for Stage 1 when I was diagnosed) Although I may never reach NED, life is good!

[chrisy]

Original DX 6/2002 DCIS, Stage IV in 2004. Although the last 9 months have been a steeplechase for an effective therapy, overall I've been doing great since, well, 2004!

[Emelie B]

I was diagnosed Stage IV on Feb. 14, 2010. Was on Herceptin only until two weeks ago and a PET showed the cancer has returned and we are working on a new plan. Had biopsy last Friday and I meet with my onc. on Thurs. to see where we go from here.
I'll be honest not feeling so good, but know we have some options and it will get better.
Stay strong and know I have had a great 2 years with family and friends.
Emelie

[Mandamoo]

Diagnosed stage 4 while on adjuvant therapy for early breast cancer - spread to skin, an Axilla node and numerous lung mets - this was in June 2011.

Had 7 months of stable disease while on Bolero trial - progression in lungs in January 2012. Just started Tykerb and xeloda. Had an inconclusive lung biopsy - they think they missed the tumor (apparently the most difficult lung biopsy the radiologist has ever done) - may try again after next lot of scans as lung tumors seem to be behaving atypically it would be good to test the tissue.

I live my life fully - I have made large changes to my diet and am encompassing and embracing emotional, psychological and spiritual growth. I live in hope that I can be well and ultimately cancer free to see my children to adulthood.

I love that this community is so supportive and encouraging. Thank you.
Amanda

[Vicky]

Diagnosed March 2011 stage IIIc until PET scan revealed mets to liver and spine, stage IV.

Accepted into Marianne trial of tdm1- first infusion April, 2011. Scans after 3 treatments reveal liver spots gone! Breast, spine and lymph nodes all shrunk in size. Remain stable on tdm1 for 10 months.

Right side mastectomy August 2011.

Progression called February 2012 with 4 small lung mets and 1 spot on the brain.

Begin Halaven February 21. Meet with Radiation Oncologist for targeted treatment to brain starting later this March and treatment for mets in spine.


I gather so much info from this site. My doctor is impressed at how much my knowledge has increased and he in turn takes suggestions and input from me, which I learn from all of you!

I continue to enjoy a good quality of life- I am an active mom to a 9 and 11 year old boys and travel with their hockey teams all winter. I've also changed my diet and spiritually grown deeper and deeper. I count my gifts every day and live my moments with intention and grace.

I continue to be filled with hope and am so honored to be amongst so many strong- spirited and inspiring people!

[KaiM]

Went stage 4 just one month after initial diagnosis went a CT scan was ordered. That was just this past November. I have been on weekly TCH plus zometa, just finishing up my fourth cycle. I had another CT scan after round 3 and things looked good, the cancer is responding to treatment and shrinking. Bones are healing.
Overall I feel good, I have my tired days (taking care of an 8 month old and a toddler could do that to anyone!) and need more rest, but I'm coping. I continue to look at my blessings and embrace hope and healing!

[SoCalGal]

16 years from original diagnosis, including the last 5 years stage 4. I live a normal, active, hectic-full life. Mets are mostly stable, so I think of my disease as chronic. Every day I practice staying out of fear (future based) and staying present and engaged in life. I feel very lucky to have this board and the support and inspiration of others.

[Kathy T]

27 years from original dx! Stage 4 past 9 years. Stable past 2 years on TDM-1.
Kathy T

[pibikay]

Hema diagnosed in March 2010 stage IV liver,spine and rib mets.Usual Chemo 9 doses of herceptin then on tykerb and xeloda.28th Jan '12 tets chest normal,residuary mets in liver lobes.lesion in brain just underwent radiation for brain lesion.Normal except vision is hazy.Fixed an appointment with optholmogist for glasses.Ultra sound and x ray scheduled for end of this month.hoping for the best

[Pmoore]

Diagnosed in 2003 pregnant with 2nd child,stage II .Stage IV 2010 lung mets.Herceptin and Arimdex only so far.Almost 10 years from initial diagnosis.

[Barbara H.]

Diagnosed 1998. Stage II/III. I did not know at that time that I was HER2, but learned a few years later. I was ER/PR neg. Stage 4 May, 2004. Currently NED on Herceptin/Tykerb and hope that continues. I work full time as a teacher.
Barbara H.

[Bunty]

11 years from initial diagnosis which was stage II. (Herceptin only given to stage IV back then.) Became stage IV Oct 2007. Love life, live it healthy and well, even with the odd bout of chemo in there! Just on herceptin at the moment and all stable.

[kk1]

8 years stage IV almost to the day!!

Primary Dx in March 2004 stage IV. NED most of the time but periodically have to get tough.

Currently, NED for the past 3 years! longest stretch to date. Excited to update my signature again with another year. Almost feel like I have my life back again---but with quite a few gray hairs.

So Grateful, wishing you all the same.

[dchips1]

My name is Darita, As some one posted above this is a "chronic " illness for me as well. I thank God I am still here. I thought I was going to have 2 years in a row with no cancer "stuff" going on.
Jan 2012 ingrown toenail with podiatrist and diabetic foot check, when I also reported sensation changes in pelvis and right leg. That resulted in getting a nerve conduction study on lower extremities (was normal) to HEY lets MRI the spine. Low and Behold 2 spinal mets in the thoracic spinal membrane.

So I still am active and praying that the 20 rounds of radiation per spot will take care of the 2 spots. He is stretching out the days of tx to lessen the swelling and to try to stay away from decadron.(Diabetes from steroids).
I am on weekly herceptin, daily 750 mg tykerb and looking forward to Pertuzamub!

For the most part my LIFE is good, we RV camp, walk the dogs, raise my kids. I don't run marathons nor did I ever

God is Good and Life is Good
Prayers to All
Darita

[Vicki revised]

Dx stage 4 IBC, mets to liver one year ago. Did 6 rounds of taxotere, carboplatin and Herceptin before surgery. At end of chemo PET scan showed all live cells gone except for orig tumor which had shrunk 90%. Bilteral rad/mod mast in Aug.

Path report: no remaining live cells and all lymph nodes were clean--clear evidence they had been malignant but were no more. no more chemo or any rads since I was in clinical remission, continuing Herceptin.

Thought I had my life back. Jan 2012 scan showed mets returned to liver more than before. Currently taking Tykerb in addition to Herc. Next scan in May and will go back on chemo if mets are still there. I was already scared and deeply depressed and then I was dx with mascular degeneration in 1 eye last week.

Friends and family do not realize the gravity of having mets return in less than 6 mons. Trying to find a way out of this dark place I'm at.

[CoolBreeze]

DX Stage IV in May 2011. (Originally DX'd stage II in August 2009)
Liver mets. Had resection and ablation October 2011.

NED

Treatment: Got a severe septic colon infection in November that I'm still recovering from so no chemo. herceptin and zometa only. Hope to go back on Navelbine when I'm healed.

Almost three years of continual treatment so far and I hope it continues for another 30 years.

[teresalynn]

Hi, I just came across this post now. So here is my DX for STage 4
I was diagnosed 7-29-11 with Breast Cancer, stage 2. Rapid growing cancer, 3 lumps in left breast. After catscan week later showed mets to liver, diagnosed then stage 4. Moved right into chemo of Carboplatin, taxotore (i missplled i think) and herceptin. Completed 6 rounds, now on hormone therapy of femera, and afinitor. Feeling extreme muscle soreness and joint stiffness from the Femera. Other than that, I am doing okay.

[jml]

Working my way towards my 10 years Stage IV...only a few months to go. Can't believe it's been nearly a decade, but when I look at my treatment history, it has been a hard fought decade.
Need for this disease to shut itself OFF already!
Or for TDM1 & or Pertuzumab to knock it out into oblivion!

Keeping the Faith~

Jml
Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR;)

[ninjalyn]

Diagnosed stageIV in March 2011.Multiple mets in lungs and chest wall. Had navelbine and herceptin with some success. Now on herceptin plus arimidex. Last scan was very good.
Not quite NED but getting close.

[KsGal]

Im only stage IV since December. There was a month between my original diagnosis and finding out I was stage IV. Im on taxotere, carboplatin and herceptin right now. Won't know if it is working until later this month when I get a CT scan. Still working full time and feeling okay most of the time...still dread the first days after chemo because they SUCK, but Im hanging in there.

[KDR]

Diagnosed June 2010, three tumor sites. Breast, lymph and liver. Breast and liver eradicated by Taxol and Herceptin and have been dead for over 14 months, did not return. Liver mets progressed on Tykerb, Xeloda and Herceptin, but were finally eradicated in January 2012 by trial T-DM1, Pertuzumab with initial doses of Taxol.

Karen
Who Believes In The Cure

[DianaMK]

Stage 4 (June 2010). First diagnosed December 2006.
Currently on herceptin and stable

[dawny]

Stage 1V from the get go in May 2011. Abraxane for 16 weeks, along with Herceptin. Sept 2011 NED. Dec 2011 scans show NED. Going for more scans next week, hoping for NED to be with me still. Feeling good after coming of chemo, but still very anxious about what may lie ahead.

Dawn

[Mtngrl]

I was also Stage IV at dx. My "bad mammogram" was a year ago yesterday. It took until May 24 to finish the staging workup, so I guess that's my real "cancerversary."

I live in Boston. I'll be graduating from seminary next month with a Master of Divinity. I got accepted into a doctoral program at the same seminary and will start in the fall. I'm also on track to be ordained in a mainline denomination. The doctorate will take five years. It's a second career. I practiced law for almost 30 years first.

I realize I might not live to finish the doctorate, but right now I feel fine--strong and healthy. I didn't get "chemo brain." I took incompletes in two classes last spring semester, due to the upheaval from the diagnosis, but finished the work for them last summer. I've taken a full load each of the last two semesters.

I've learned a great deal from everyone on this site, and I've "met" so many wonderful people. I feel like I'm getting a masters' degree in breast cancer along with my M.Div.

I realize I can't change the past or control the future so, more and more, I just live in the moment. Nothing bad is happening right now. I'm happy to be alive.

[caroline96]

Originally diagnosed as stage 1 back in 2003, that was 9 years ago. I had a recurrence in Dec 2010 with mets to the lungs, lymph nodes, and bones. Xeloda, Herceptin, and Zometa zapped all the lesions in the bones. Bones were clear in June 2011. Due to progression in the lung, the treatment was switched to Taxol with continuing Herceptin and Zometa. After 31 infusions, almost all the nodes disappeared and the tumor in the lung shrunk from 6 cm to 1X2 cm. Now on Herceptin, Faslodex, Femara, and Zometa. Last bone scan in March 2012 was still negative.

One day at a time!

Maria