HonCode

Go Back   HER2 Support Group Forums > Profiles In Courage
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 04-15-2005, 09:12 AM   #1
Lolly
Senior Member
 
Lolly's Avatar
 
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
LOLLY
lollyanna53@hotmail.com


My story begins years ago, in 1989, when I found a smallish lump in my left breast. My husband's family had a lot of cancer and I just didn't want to believe I might have cancer, so I went into immediate and complete denial, not seeking medical help or advice of any kind. I convinced myself it was just a fibroid cyst, and we'll never know if it was or not (probably not). It did seem to fit the profile, and so for 10 years I carried on. But by 1999 the "cyst" had changed and enlarged to the point that I finally woke up and got myself to a doctor, thanks to my husband's urging. After blood work and scans that showed no apparent spread, which seemed pretty miraculous, I was scheduled for a biopsy with immediate mastectomy if the biopsy showed cancer. It did; Stage IIIB, 3.7 cm and 2 cm infiltrating ductal carcinoma with 5/5 nodes involved, ER/PR negative. Thanks to my surgeon I was also tested for Her2/neu.

At the time it didn't mean much to me that I was Her2/neu 3+, but my surgeon told me I might be eligible later for treatment with a new drug called Herceptin. By this time I was pretty scared, but also ready to fight, and I started treatment right away; six months of chemotherapy (4 A/C followed by 4 Taxol), and 6 weeks of radiation. I was fine for six months, but then began showing symptoms of recurrence. My oncologist was expecting this, and even though scans came back negative, we were sure the cancer was back as I had enlarged nodes in my neck and collarbone, a strange rash over my collarbone (all of this on my left side, site of the primary cancer) and enlarged nodes under my right arm with my right breast also swollen and tender. I also had several small peppercorn sized bumps in the scar area. My surgeon did a biopsy of the neck node and also the rash, and both confirmed the original cancer was back. So, I started weekly treatments with Herceptin/Navelbine on January 29, 2001.

Within 3 days, I was seeing improvement: lymph nodes smaller, pain and stiffness in left shoulder diminishing, right armpit area better; by the following week the bumps in my scar were almost gone, and it just got better and better. After 6 months, we dropped the Navelbine, and I continued with Herceptin alone for another 6 months. My oncologist, being cautious but optimistic, said I could consider myself to be in remission, conditioned by the fact that the remission was being maintained by Herceptin.

On April 1 of 2002 I received my first triple dose of Herceptin. I had
surgery 10 days later, a mastectomy of my right breast. My mammograms had shown suspicious calcifications, and given the involvement during my recurrence, I didn't want to take any chances. There were no complications(pathology on the breast and one lymph node showed no cancer, but the node was termed "reactive"), I had my next Herceptin dose 4 weeks later, and continued receiving Herceptin every three weeks until May of 2004, when it was determined by PET that I was experiencing a second recurrence to the same lymph nodes that became enlarged during the first recurrence. I immediately started weekly Navelbine/Herceptin, and again had a very good response. Within a few months the nodes had shrunk, and after 6 months I was in remission, back on weekly maintenance Herceptin, and thanking my lucky stars I have "reactive" nodes, and a good and kind doctor who listens when I have concerns.

In January 2005 I entered a Her2neu/Herceptin Vaccine clinical trial at UW/Seattle, WA, receiving the first of 6 monthly vaccines. I was told I demonstrated a strong immune response, but unfortunately recurred for the third time that October with progression to the right axilla. I again started Navelbine, but my response this time was slow, so in February Xeloda was added. I showed good response, with some shrinkage of the largest nodes but with new activity starting so my onc recommend radiation to the right axilla. The rad onc felt that this problem area could be cleared up with an aggressive course, so recommended 33 rads and increased it to 37. I had a PET/CT done 3 months later which showed the mass had shrunk significantly, but 3 new areas of concern outside the radiation field cropped up.
As of March 2007, I'm still on Herceptin maintenance, now combined with Gemzar weekly. Awaiting Tykerb approval!

Her2 Support Group has been a guiding light on a sometimes very dark road. Thanks to the knowledge I've gained here, I’ve been able to stay on top of the current options for Her2+ BC. Thanks to the support gained here, I know I'm not alone, there's always someone ready to listen and help me with my fears and concerns. And thanks to the hope this site provides, I live each day with joy and the belief that I will survive.
Most of all,Thanks to Christine and Joe for providing this forum for all of us to share our stories, treatments and concerns. Together we are so much stronger!



Lolly is offline   Reply With Quote
Old 04-28-2005, 06:32 PM   #2
Lolly
Senior Member
 
Lolly's Avatar
 
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
Hi Carolyn; Sorry not to respond sooner, but thanks for the kind words. I really don't feel brave so much as extremely lucky, knowing what I now know about cancer...I was very foolish not to seek treatment sooner. Anywho, it's still early days on this trial, only Phase I-II, but yes, I feel the doctors are optimistic as they have some very good data coming out on the '96 trial with this same vaccine, Stage IV women NOT on Herceptin, 38% five year survival stats! I hope if this makes it into Phase III that there will be locations around the country and you will be able to get in on the vaccine. We'll keep our fingers crossed!

<3,
Lolly




Diagnosed Sept. ’99 at age 45, Stage III B Invasive Ductal Carcinoma, ER/PR neg HER2+++ by IHC, confirmed in 2004 by FISH. LMR Mast., AC/T, 33 Rads, finishing tx for primary disease in summer 2000. Diagnosed Stage IV in January 2001, started Herceptin/Navelbine. NED (No Evidence of Disease) by August 2001! Continued on Herceptin Maintenance. RS Mast. in April 2002. After 2&1/2 yrs.of remission, recurrence in 2004. Participated in UW/Seattle vaccine trial in 2005, radiation (37) to right axilla in fall of 2006. Have had 3 recurrences to local, regional and distant lymph nodes since January 2001. Herceptin has been the "Backbone" of my treatment strategy, with first Navelbine, then Xeloda and now Gemzar added to acheive remission or stable disease, while maintaining great quality of life!


Lolly is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 03:54 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter