another reoccurrence - this time to lungs

[Shell]

Unfortunately, I had a pet scan that is showing uptakes under my arm, clavicle, along the chest and also several lung nodules.

I was originally diagnosed in mar 03, stage IIIC, and had neo-adjuvant chemo of cytoxin/epirubicin/taxotere. Great response, had lumpectomy, SNB (negative), 2 more t/ments of CET, and then radiation. I also took Herceptin/Navelbine for 3 months just as a prevention. Finished in 1/04, and felt changes under my arm in 9/04. Cancer back in lymph nodes under arm, and had complete axilla dissection in Dec 04. Went on Herceptin/taxotere weekely (3 weeks on/ 1 week off) and this week was supposed to be my last taxotere. Felt changes under the arm again...and thus the pet scan and the devastating news.

I am er-/pr- and her2neu+++. My doctor will be speaking to me soon to discuss different t/ment options, and I just wondered what has worked for people with reoccurrence, to the lung, who are er-/pr-.

Obviously that this reoccurrence happened while on herceptin/taxotere is not promising, but I hope there's something else out there that will work for me.

Thanks for your thoughts....

Shell

[Esther]

Shell, I'm sorry to hear about your lung progression. I think you have a great chance of finding a treatment combo that will work for you.

Dr. Pegram at UCLA said to me that Herceptin can be used in combo with many chemos, and if one combo doesn't work, that does not mean that a herceptin combo with another chemo will not work.

You didn't mention having any side effects from the lung progression so far, so perhaps that means you are catching it early, and treatment may hold it at bay.

keeps us posted, sending good healing wishes your way!

[Shell]

Thanks, Esther. My doctor is thinking initially xeloda + herceptin. I've also asked him whether I am a candidate for Lapatinib, but I don't know much about it yet.

I forgot to ask and maybe others could comment on whether anyone has used the Immunicon test marketed by Veridex for the circulating tumor cell (CTC) test, and whether insurance has reimbursed anyone for it, or what is the cost.

It just seems to make sense that the CTC test would be more useful than waiting a longer period of time, and then having to undergo the CT scans and MUGAs...

Shell

[*_Cathy_*]

Dear Shell, I don't know how reliable pet scans are. If you go to this website, you may be surprised what this doctor says can cause false readings in a pet scan. http://www.susanlovemd.org/community/questions/q030725.htm My petscan is showing something similar to yours. I recently had therapy in my arm for lymphedema. My chest wall began to ache and I found on the lymphedema website that chest wall lymphedema is very common and that I should massage the area. It feels fine when I do that. What is a ctc test? Is it more conclusive than a petscan? Did you get a second opinion? I wonder what kind of chemo Peter Jennings is on? I can't seem to find out.Do you have a good doctor? Don't worry, they'll figure out something for you to use. Keep praying hard. God Bless you, Cathy

[san]

Hi Shell,

I discovered mets to my lungs from a chest xray in May of 03. At that time the tumor was 9cm. I was started on weekly Navelbine and Herceptin. Stayed on for a year and tumor was esentially gone.

They tried me on herceptin only every three weeks for 6 months but the tumor returned.

So I'm back on Nabelbine and herceptin weekly since Jan. Once again it's reduced the tumor.

I'm Her2++, er- pr-

So sorry to hear about your mets. Good luck with your treatment. Keep a positive attitude!

Sandie

[Think Pink]

Dear Shell,

I'm so sorry to hear about your METS, your story is so similar to mine it's scary. I felt like I was reading my own story. I am basically in your shoes, only I was diagnosed in May of 03 @ stage TIIIB, my initial tumor was 11cm big, they said it looked like a softball that 's how big it was.

Anyway, I have had the exact same mets at around the exact same times as you, I have Inflammatory Breast Cancer. When the nodules in lungs and mets in nodes under arms became active again back in Sept. 04, I was put into a study with a drug called GW572016 (just recently named Lapatinib). Since on the drug I had tumor reduction with a couple small ones gone completely, the nodes under arms shrunk and were no longer palpable. I have no side effects other than irritation in my mouth if I eat salty or citrus foods so I stay away from them.

In the arm of the study that I'm in, I do the Lapatinib along with weekly doses of Herceptin. So far so good but I was sick with Cellulitis to my arm due to Lymphedema twice in the past month and a half. I was put on super duper antibiotics and just the other day started to notice that weird feeling you get uder your arms when the cancer is on the move again, you mentioned feeling something different in your letter also. It's hard to explain but I know you know what I mean. Anyway, I'm not due for scans til June 17th but the doctors said I can have them sooner than that if I'm scared about what I'm feeling, they always let me lead them when I have them weird feelings. So, I'm going to wait till this Thursday and let them examine me and we'll go from there. Wish me luck, I'm praying the study drug is still working! If it's not, I also will have to look for something new like you.

Oh, by the way, after I had the mets to nodes before it reached lungs, they put me on Xeloda with Herceptin, and that bought me 9 months with no mets, no side effects, wish it had worked longer but I'm grateful for the time it bought me. Feel free to email me if you'd like to talk, I'd love to keep in touch since we're in the same boat. I'll keep you posted on here as well.

God Bless, Martha

[Shell]

Martha-

Thanks for your email - we do sound similar. My onc has recommended herceptin w/ xeloda. However, I was looking at a clinical trial, w/ a control arm of lapatinib, but it appears to be a different one from yours. It is a Phase III trial for Xeloda w/ or w/out lapatinib. I've asked for some more information about it.

If anyone else is participating in this one, or has more info, I would be grateful, as I have to make a decision in the next few weeks.

I also had the cell search test done (w/ ciculating tumor cells), but I haven't received any results yet.

Rgds,
Shell