New member

[Maggilu123]

Hi All,

Very glad that I found this site, have been reading post and compairing with what is going on with me. I am new to all this and don't have alll the lingo down yet.

Was dx in February with Stage IIIA, ER/PR-, HER2+, since I don't have insurance took a month to find help with treatment but thankfully found some great doctors. Had surgery in April, port placement and removal of three lymph nodes and had Herceptin and Taxol while in hospital. Just finished last Taxol treatment and have had Herceptin weekly. Next week I start Cytoxan, Epirubicin, and Fluorouracil (5-FU). Will be having every 3 weeks for 4 cycles. Also is going to give me Decadron and Herceptin. My question is has anyone else received this treatment in this order?

Thanks,

Peg

[al from Canada]

This is a strange combo, maybe someone else can add experience to the replies. However, getting Epirubicin AFTER herceptin is contra-indicated. I don't think you can take herceptin + Epirubicin at the same time because of the chance of heart damage; and why would you stop herceptin after starting it, only to re-start it again? Are you sure you got the order right? Also, I can't understand why they are still using 5-FU when the smart-drug version (xeloda) is readily available. I can see using 5-FU to prime for surgery or continuous infusion during, to prevent metastatic spread.Personally, I wouldn't do another thing until you get a second opinion; unless I am way off base because things have changed.
Al

[Chelee]

Hi Maggilu123, I have so much to learn about all this stuff and chemo regimens, etc. But as Al said in his post...that combo of drugs would concern me?

Myself I am concerned about almost the same thing you are talking about as I have stage IIIA breast cancer and was put on Herceptin, Taxotere, & Carbpotin to start. Now I am done with that and there is mention of putting me on AC and Cytoxan. This put my radar up after being on this board. The WAY I understand it...you USUSALLY always have the AC first followed by other chemo regimens. And you never give herceptin with AC or a drug simumlar to that such as the Epirubicin you mentioned.

This would be quite worrisome to me? I know I have been told you cannot take herceptin and a Epirubicin based drug together. Serious heart problems can arise.

You mentioned your doctors giving you Cytoxan, Epirubicin, and Fluorouracil (5-FU) starting next week. He will also give you decadron and herceptin.

You need to sit your doctor down and have him/her slow down and explain things to you a little better. Sometimes these doctors mean well and just start going a mile a minute and it can get very confusing!

But BEFORE going ahead with this....I really believe you need to talk to him and see if you undestood him completely...and if you did...then PLEASE at least talk to another oncologist before going ahead with that treatment plan. Like Al said...maybe things have changed...but when it comes to the chemo regimen you mentioned...I don't think it changed that much. We are just trying to help you out and save you some problems...unless we are wrong? But it won't hurt you to talk to some other oncologist first. I wish you all the best. Hang in there.

Chelee

[Christine MH-UK]

It is a bit unusual. There was a trial that used (herceptin+taxotere) followed by FEC, but that was FEC by itself (not at the same time as herceptin and not followed by herceptin). There weren't many heart problems. This trial, FinHer (for Finnland + Her2), was quite small, but with good results, even though the level of FEC used is now much lower than what is currently used (what FEC level are you getting by the way?).

There was also a very small trial announced at ASCO in 2004 in which women got herceptin + FEC together, but as I recall it was a small phase II trial and I haven't seen the followup. I don't think that there was a herceptin tail to this trial, since it was neoadjuvant. Supposedly there weren't heart problems, but I think the followup was short and this was also a small trial. This trial also had good results in shrinking tumours before surgery. This trial was conducted at M.D. Anderson.

I haven't seen anything that combines these things though, so there might be a heightened risk of heart damage, since this seems to be uncharted territory.

Your oncologist may have a good reason for giving you treatment in this order, but you need to make sure that you are comfortable with it.

[chrisy]

Hi Peg, welcome to this board. There are many very knowledgeable folks here and you will get a lot of great information here. I have not personally heard of this combo in this order, but treatment protocols do vary. I would strongly recommend you seek a second opinion, at a NCI cancer center if possible just because there are so many different options, and what you are saying does sound unusual (but not necessarily "wrong") Be prepared to get differing opinions, but the most important thing is that YOU feel comfortable with the decision - it is, after all, YOUR life.
Good luck to you - hang in there.
Chris

[Peggy]

Hi Peg,

I am stage IIIC. I participated in a clinical trial that gave FEC100 + herceptin x4 followed by taxotere+xeloda+herceptin x4 followed by mastectomy and radiation x33. The herceptin was stopped 3 weeks before surgery and resumed 3 weeks after surgery. I was pathologically NED. I have a muga or electrocard. every 3 months and my ejection fraction has improved during treatment. I had my last herceptin treatment last week.

So, while my treatment is different it has some similarities. The results of my clinical trial will be reported at the San Antonio conference in Dec. My oncologist says the preliminary results appear very good. I know I am pleased.

Hope this helps.

Peggy

[Sheila]

Peg

Where are you at in Florida....I have heard great things about the Moffitt Cancer Center in Tampa.....maybe another opinion is in order.
Irene on this board is also from Florida,,,maybe she could give you some help.