***What was your date of dx, stage, treatment and current status...???***

[sadie]

StoneMSU:
HI Lori. This is Carol>Your treatment buddy (for a few times, anyway).
Hope you're doing ok with rads. Did fine as long as I used the aquaphor.
All dryness & redness gone within 2-3 weeks after last rad. Doing ok with the Herceptin-only treatments.
Just want to say: glad you joined the website. These ladies are great and full of info! Sorry ladies for posting something outside of topic, but I HAD to say hi to Lori (and her Mom)!
Carol / Macomb Twp

[mimima]

Hi Sadie
Haven't visited website recently but your post caught my attention as your diagnosis is similar to my own. Stage 1, lymph neg, 1.4 c., IDC, ER/PR neg, HER 3+++.

I completed 27 rads mid-June with no fatigue and very little skin reaction (used aloe vera gel). I did not choose chemo, but started one year Herceptin (every 3 weeks).
Have had six treatments.

I still know zero about the effectiveness of Herceptin without chemo. Have you found out anything? I've only been told about Herceptin with chemo. I would like to think that it is going to work on its own. Any questions I should ask my onc?

Incidentally, the Herceptin gives me no ill effects. How about you? Take care. Mimima

[sadie]

Hi Mimima
Glad to hear you're doing good on Herceptin. I'm like you. Curious to see how others with "close-to-my" diagnosis are doing.
I have only heard that Herceptin does best when given in combo with certain chemos.
I have had blurry vision with Herceptin. Still have neuropathy (left over from taxol?).
There is a msg board for that topic: Herceptin reactions. You should visit that board and see what problems others have had.
I have had 5 Herceptin-only treatments. My Muga went down to 58 last time. Hopefully it will stay steady.
I'll watch for future posts by you on this site.
Take care. Good luck!
Sadie

[mimima]

Hi Sadie
It's been a while. I've still been wondering if the route I took i.e. using Herceptin with no chemo was a wise one given the Her2 +++.
I saw my med-onc yesterday and asked whether she had any patients taking Herceptin solo. She does not. (I chose this therapy with a different med-onc).
My present doctor feels there is a good rationale for taking this course of treatment.

I asked a lot of questions about testing PTEN13 and other factors that weight whether Herceptin is being effective. Seems these tests can only be used for existing tumors.
So far, I am tumor free, happy, leading my usual active life.

Mimima

[andrearose]

Diagnosed - November, 2003 @ age 58
Diagnosed with IBC [Inflammatory Breast Cancer], stage 3b
Treatment was TAC for 4 months, followed by double mastectomy [MRM on affected breast and prophallactic simple on the other side]. Had 35 days of radiation to finish upthe summer of "04.
Currently on the last 4 months of one year's Herceptin cycle.
Have had excellent results with each and every stage of treatment, and am planning to beat the odds, currently NED and holding!!!

[dawn]

Hi Rhonda,

Attached is my signature. All Chemo is finished and going in 10 days to get the tattoos for my rads. So far things are going really good.

[KellyA]

Still in treatment-

Dx 05/05/06 grade3, ER/PR -, Her2 +++
Mastectomy 05/17/06 (double), immediate reconstruction
3 positive nodes, Stage 2b
4 AC, followed by 12 weekly Taxol, weekly Herceptin till 09/07
seven weeks of rads following chemo

KellyA

[gin-tx]

I'm curious, did you do radiation after or before reconstruction. I've heard some people say that they can't do radiation after reconstruction. This is my second episode of BC, first 10 yrs ago. Left breast, lumpectomy followed by radiation. Then something appeared on right, went to breast surgeon, biopsy looked good. Four days later he called and told me it was malignant, had wider margins and lymph nodes removed, only one malignant, margins clean. But then had bone scan, found spot on spine, followed by MRI, revealed tumor on spine, grade IV metastatic cancer. Am going thru Herceptin/Aridia every 3 weeks, so far it's helping, plus I had 18 radiation treatments to spine. Good luck to you and keep me informed.

hugs,

ginkott1@aol.com

[KellyA]

Hi there-

To answer your question- I did have reconstruction before radiation (with implants). Unfortuneately I did not really have much of a choice. I did not have enough tissue for two breasts (to do a flap). My plastic surgeon and my radiation doc both advised me to get them in. I was told that there was a 50% chance of contracture with radiation, but that they could go in and fix that side afterwards if they needed to. They told me that the skin would probably not expand after the radiation and that they might not be able to get them in at all. So I'm just going to pray alot that they hold up and if they don't I'll get them fixed. I will let you know how it goes.... :-)

Kelly

[gin-tx]

Dear Kelly,

I certainly hope it goes well wth the radiation and reconstruction. I'm learning a lot. I did not have a total mastectomy but a partial and asked my surgeon if I should see a plastic surgeon before my surgery so he could see how I was before. He advised against it. In the beginning I was going to do reconstruction of some type, now I've decided not to. At my age and all that I've been thru, am going to leave things alone. I don't think I could go thru more stuff. If I was young, in 30's, 40's, or even 50's, I would definitely consider it. But at this point in time don't think so. I just want to get thru what I'm dealing with. I do herceptin/aridia every 3 weeks and don't have a clue how many treatments I have left plus I'm dealing with a malignant tumor on spine that is shrinking from radiation but slowly.

Good luck and keep me informed as to your progress.

hugs,
ginkott1@aol.com

[Jackie]

Stage II, DX 4-05
EP +, HER2 +++,
1 node, 1.6mm
Simple Mast/Reconstruction Left breast 6/05
4x AC/4xTaxotere/Herceptin--finished chemo 11/05
Herceptin to cont. for yr.--stopped due to drop in Muga--hopefully to restart soon
47yrs. old (posted the above in the Spring)

I did restart Herceptin at a lower dose and finished 8/06
I went for my 3 month follow up and all is good. My tumor markers were within normal limits. Yeah!!!!!!

[cafe1084]

Diagnosed at 36...
Found a tender lump between my breast and armpit while rolling over in bed on 7/29/06 Had neglected my self exam for 5 months due to school and work demands...just simply didn't take the time! Everyone said not to worry because it was tender and cancer isn't usually tender...good thing I didn't listen. No family hx of BC,
AUG. 8, 2006
Core needle bx showing DCIS grade 2

AUG. 24 2006
1.5 cm IDC grade 3(9/9) HER/2+ (amplified, 2.5), ER <10 %, PR negative
w/ grade 3 (9/9) DCIS AND LOBULAR CA TO LUMPECTOMY MARGINS. Right breast clear

OCT. 4 2006
BILATERAL MASTECTOMY 16 of 16 NEG NODES scheduled for A/C Q3W x 4, then T W/ HERCEPTIN QW X 12, FOLLOWED BY HERCEPTIN FOR 40 W- Decided to have bilat mastectomy to reduce chance of recurrence in right breast since lobular ca was also found in left breast.

STARTED AC NOV. 4 2006- NEXCURA's a life saver...explained how to avoid much of the nausea from AC with scheduled zofran....nice if my doc wouldve clued me in on this. Severe inflammatory bowel, gastritis, and reflux after 2nd tx, would LOVE any advice how to avoid/reduce this next go 'round--can deal with everything else, but this is going to be my undoing I'm afraid--gained 6 lbs in the first week after from inflammation!

Nice to meet everyone!
Stephanie

[DEBBIE S]

Hello All ...... Mine is posted below .....The age I was diagnoised was 49 .....
I think having all this in one post is a good idea.....

Debbie S.

[DeeUK]

Diagnosed at 29 years old, in July 2005, with stage 1, grade 3, Er- Pr- HER2+++ IDC (18mm tumour). Lymph node negative, extensive vascular invasion. Bone, lung, and liver scans clear at time of surgery.

Lumpectomy, followed by 6 rounds of FEC chemo, followed by 30 sessions of radiotherapy, followed by what was intended to be 12 months of 3-weekly Herceptin.


November 22nd 2006, now 30 years old, and just after Herceptin number 10, diagnosed with mets to liver (after having a stitch-like pain in my right side). One 'small' one, and a 10cm one. Awaiting results of chest x-ray and bone scan, to check for further spread.


Continuing with 3-weekly Herceptin, along with Taxotere, which began on 6th December 2006. Hoping and praying that this might shrink things. I'm 30, I have a fantastic boyfriend and amazing family. I'm not ready to go yet.

[tweet7805]

Hi this is smart idea. My info with signature still struggling with side effects. MUGA scan due 12/20/06 & next Herceptin & Onc visit 12/29/06/

[gin-tx]

This is my second episode of bc, I had bc in 1995, had lumpectamy followed by radiation, no chemo. Then in Feb of this yr discovered a problem with other breast, went to gyn, who sent me to a breast surgeon. Had biopsy in late April, he thought everything looked good, called me 3 days later it was malignant, had sentinel node procedure and wider margins, first lymph node removed was malignant, other tissue clean. During course of tests had bone scan, something showed up, had MRI, had tumor on spine that was malignant, changed status to metistatic grade IV. When I saw onc he called radiation oncologist who was on vacation but due back that week-end. He called me to come in on Mon to start treatment, had 18 radiation treatments to spine, lungs (tumor pressing on lungs) esyphogus affected, could not eat well, spicy foods hurt, not fun. Am doing herceptin and aridia treatments every 3 weeks. Still having lots of problem with back, cancer ate thru tissue at T3, only solution is spinal fusion and not recommended with chemo, healing a problem, infection high risk. So I just live with it, take pain meds when I need them, and hope it will get some better in time. Thanks for your concern and keep me informed of your progress.

ginkott1@aol.com

[tousled1]

Gin-TX,

Sorry to hear that your cancer has metastisized. Just when you think you're out of the woods - WHAM! The spine is a fragile piece of equipment as well I know. I had lower back problems for years and finally in Dec 2004 it got so bad that my only option was surgery. I had a spinal fusion T3 through S1. It's a really rough surgery and I still have problems. A year after that I was diagnosed with cancer. I'm speaking from experience and if there is any way to avoid spinal fusion I would do it. I have been on pain meds so many years I've lost track. The only time I was off pain meds was right after my mastectomy. After that surgery my back felt great. Guess it was from carrying around those heavy D cups! Well, it was short lived. I started Herceptin and along with that my back pain returned, worse than ever. In addition, all the bones/muscles/joints in my body hurt. After reading a post from Lani, I asked my oncologist to reconstitute my Herceptin with saline water instead of benzyl alcohol. What a difference! Now the only pain I have is the lumbar spine. I'm sending you nothing but good wishes and hopes that you can get the spine mets under control with chemo. I'll keep you in my prayers.

[LAURIE]

Diagonsed 8/06 (found own lump)at 35 years old
Her 2 +++, er-/pr-
4 A/C 9/06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
Start 12 weeks Taxol/ Herception 12/19/06
Rads x33 ended 5/07
Herceptin until 12/16/07

[RhondaH]

Bump this up.

Rhonda

[caya]

Thanks for bumping this up Rhonda.

My info is in my signature.
Good luck to all
Caya