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Linda
10-11-2006, 08:57 AM
Hi friends.
I don't post often -- actually I've sat back and read a lot, but now I'm really in need of info and support. I was dx her pos, hormone neg, stage 3a a year a half ago -- did A/C. taxatere, radiation and finished my year of herceptin in August. I'm 53 with a great husband, job and 2 kids.
I knew I was high risk (I had neo chemo, but was left was one pos node and a large amount in the breast -- and my path is all super high) thought all was NED, but just had a scan that showed a 9mm cavitary lung lesion (on the bc side.) It's not the usual way for a met to look, but considering my history...a Pet will soon follow and a lung biopsy.
What meds have any of you used in this situation? Has anyone had an open lung biopsy (I'm hoping for a needle biopsy, but don't know.) and how hard is it? Has anyone had a lung met AFTER a year of herceptin, and if so, how are you doing?
I know many of you know how I feel right now. Anything you can tell me would be appreciated.
Love
Linda

jones7676
10-11-2006, 10:48 AM
I do have a lung met. I also had some lymph nodes near it involved. They did CT guided biopsy - it was not that bad. They considered removing it until I had a bone scan and found additional bone mets. They did chemo and this is when herceptin was added to my regiment. After finishing chemo there was a small amount of "residual" activity. The plan was to continue with Herceptin alone for 6 months and rescan it to see if that would do it. Unfortunately for me I recently developed a brain met before we could do the other....but I/they were very optimistic for me at that point and I would be optimistic if I were you.

Barb

Shell
10-11-2006, 01:23 PM
Linda-

I had more than a single lung met, so for me the biopsy wasn't an option. I had chemo (xeloda), but am now exploring options for another chemo, as toxicity was building, and progression was noted.

Please keep us posted on how things go - I am 44, but also have a job and great husband and 2 children. I know the whirlwind you go through, but I am sure you will get lots of great advice on this site...

Take care,
Shell

R.B.
10-11-2006, 03:07 PM
You may like to look at the omega three six posts etc.

There have been some thought provoking trials in terms of risk reduction.

You can search by clicking on search on the bar above.

Please take this link in context but it is thought provoking

http://www.her2support.org/vbulletin/showthread.php?t=23104&highlight=thought+provoking

RB

Linda
10-11-2006, 05:32 PM
Dear Barb and Shell:
Thank you so much for your replies. I really appreciate hearing from you, and I wish you both the best. This is such a scary time. After I have the PET, I will know if this is one isolated spot, or if there's a lot more.
All my best
Linda

Patty H
10-11-2006, 06:14 PM
When I first had lung met, I ask my Dr. about surgery to remove it. He said they would if that was all I had but I had other places too. So if this is the only spot it is something to consider. Patty H

Lori S
10-11-2006, 06:38 PM
Linda,
In 12/05 seven months after completing one year of herceptin, I was diagnosed with lung mets to both lungs. Because of the multiple mets and pattern it was not recommended to have a biopsy. But I chose to have a CT core needle guided biopsy that was not too bad.

I did Xeloda for 4 months before the disease progressed and am now doing a clinical trial at NCI. If you would like to look into this trial check out the post under clinical trials called "New Phase II combined antibodies study" where I have listed contact information.

Please feel free to contact me if you have any questions. I hope your scan goes well!

Lori

Linda
10-11-2006, 09:27 PM
Dear Lori and Patty:
Thanks for the replies. It's good for me to be armed with as much info as possible, as I'm sure you both know. I suspect that it's unusual to just have one isolated lung spot with this disease, which of course, is why the PET has been ordered. But I'll find out soon.
How are you both doing and feeling? Yes, I'd love to find out about the trial you're doing. Is it on the east coast? I'm in the northwest.
Many thank
Linda

heblaj01
10-11-2006, 10:27 PM
Linda,

In addition to the many useful suggestions in previous posts, you may want also to discuss with your onc the feasability of Avastin in combination with chemo, based on info in this site, (keeping in mind that Avastin may in some cases cause serious side effects on lung,gut,brain):
http://www.drugdevelopment-technology.com/project_printable.asp?ProjectID=2675
AVASTIN (BEVACIZUMAB) - ANGIOGENESIS INHIBITOR AND CANCER THERAPY

Linda
10-12-2006, 09:57 AM
Dear Hebla:
Thanks. I know of Avastin and have seen other patients getting it in my onc's office including bc mets patients. I seem to remember also that it has not been approved for bc. Is that right? Does anyone know if that prevents insurance from covering it? I will certainly ask about it. Actually, there was a beautiful woman in my office doing really well on it -- 7 years out with stage 4 ovarian cancer, feeling great!

Lori:
I read your posts in the clinical trials thread. How are you doing now on the mono antibody trial? Is it working for you?
Love
Linda

Monica
10-12-2006, 11:29 AM
Hi Linda,
You and I seem to be in a very similar place. I just found I have a small subpleural nodule of 5mm in my left lung - . At this point, I don't know that it's mets but I'm trying to prepare for the worst. I was stage IIA, ER+ and finished herceptin in June 2005. I haven't been on tamoxifen because it seems to trigger my MS, although I tried numerous times.

I have read that if you have one lung met, removing it has shown good results. I'm also wondering if I could get tykerb since herceptin/taxol seemed to not have worked. I have no idea whether that's a possibility.

I hope for both of us it turns out to be benign.

Best,
Monica

heblaj01
10-12-2006, 01:39 PM
Linda,
You are right:Avastin is not yet approved for metastatic BC since Genentech
application for approval by the FDA is on hold until the manufacturer supplies more info on safety & efficacy based on the results of the clinical trials.
This may delay approval by about 12 months as commented in this press release:
http://www.gene.com/gene/news/press-releases/display.do?method=detail&id=10007

Monday, Sep 11, 2006
Genentech Receives Complete Response Letter From FDA for Avastin in Metastatic Breast Cancer

Your onc may nevertherless be willing to prescribe Avastin off label if he feels the clinical trials showed good outcomes.

Ceesun
10-13-2006, 01:15 PM
Hello Linda, I was diagnosed with a single lung met this past August. It showed up on a cat scan and then appeared barely active on a pet scan, but my onc ordered a lung needle biopsy which was not a difficult procedure to my surprise. It was determined to be bc about 1 centimeter so my doc put me in a clinical trial of herceptin/navelbine and xeloda-after 2 cycles it has gotten smaller. My oncologist did not want me to have surgery as I had already had lung surgery for a benign, non breast cancer issue but had complications from that surgery. He said he would treat with chemo whether or not I had surgery so that is where I am. I had been on herceptin for 9 months-although I was 20 months done with chemo when I started herceptin. Hope this helps-good luck Ceesun

karen raines hunt
10-13-2006, 01:42 PM
Hi Linda,


Our situation is very similar. I was diagnosed a year and a half ago at age 46. I was also stage 3A, Her+, but also ER/PR+. I am in the HERA trial, so had the same treatments + radiation. I finished the year of Herceptin in JUly. I was wondering if you had symptoms suggesting the possible lung mets or was it a routine scan?
I wish you the very best.
Karen

Linda
10-13-2006, 01:57 PM
Karen and Ceesan:
Hi. You are all so generous to reply. It really helps.
Ceesan: I'm glad you are doing well and having such a good response. If you don't mind, I'd love to know how you feel. Are you able to carry on your normal life on that drug regimen? I've read quite a bit about Xeloda, but don't know as much about Navelbine. Good luck. Please keep me informed.

And Karen: For your info; I'd had pre treatment staging scans (clear except for the breast and axillary nodes,) and then had full scans a second time after I finished chemo/surgery/radiation, basically because my onc was nervous, since I'd had a less that great response to neo adjuvant chemo. The post radiation scans were NED, although there was a stable lung spot (also there on my pre treatment scan) that they just wanted to rescan in 8 months as a precaution. I thought I was out of the woods, and I feel great -- no symptoms at all. The spot they were watching was indeed nothing (some old scar -- very common,) but a New spot showed up. Ugh. So, that's the panic. It's still possible that it's benign, but I'm preparing myself.
Don't assume, though, that you are headed for the same scenario. We're all different and there are LOTS of women that don't recur. And being er/pr+ is a big advantage. I wish you the best. Thanks for your posts.
Linda.

Ceesun
10-13-2006, 06:26 PM
yes, so far so good on the normal life-some days better than others. I am very tired after a day at work though and sleep and rest a lot. Ceesun

Sherryg683
10-13-2006, 06:57 PM
I had two small lung mets with my original diagnosis in December. Was treated with Taxotere, Xeloda and Herceptin and after six weeks on treatment, i was scanned again and they were gone. I finished 4 months of chemo and am now on Herceptin indefinately. I have had 2 sets of scans since april and all was clean. I get scans eery three months and my next ones are in december. Praying to stay NED for a long time, hopefully forever..sherryg683

Linda
10-13-2006, 07:47 PM
Well, all you most generous gals; today brought more hopeful news. My onc consulted 2 other radiologists who disagreed with the original read. They think this spot is radiation lung damage (I had breast conservation and heavy radiation.) So...I'm going ahead with the Pet, but no biopsy for now...unless, I suppose the Pet lights up. If all looks ok, we'll rescan in a few months.
So...I can't tell you how much you have all helped, and I've learned a lot...and this could easily change again, or come back at another time. That's the world we all live in, isn't it? I'm trying to not go so up and down with each bump along the way, and information helps that. Thank you all so much. I hope I can support you in the same way.
Linda