Thank you

[shaeff]

Ladies,

Thank you for your quick responses as they are helpful in directing me to further research. I know everyone is going through their own battles and if there is anything I can do to help just let me know. As we are just starting our battle we have a lot of catching up to do. However, I have access to a number of medical journals such as the New England Journal of Medicine so I would like to help out in any way I can.

As far as our case, we found out in Mid july that my wife had cancer. We thought that we were catching it early as it was supposed to be 1.5 to 2 cm. Our thought process was that if we have a masectomy then we wouldn't have to have chemo or anything else since it shouldn't be in the nodes. So we went in for surgery and reconstruction at one time. Was supposed to be a two hour operation for the cancer and four for the reconstruction. Operation was July 29.

It turned out to be 5.5 cm, two nodes positive. The cancer surgery was 4 hours and the reconstruction was 8 hours.

I know our situation is not the best, 2 nodes, Her2, ER, and PR positive with 5.5 cm primary breast tumor and 1.5 cm secondary node tumor (other node was micoscopic) so we have a lot of research to do quickly, as we have the next doctors appointment Friday. We may have to make a decision on the chemo treatment then. See previous posting for treatment options. (thank you for mentioning Herceptin as part of the primary treatment as I saw that study but did not realize the significance as it was one of my first days into this new world).

Carole, my wife, is going through a number of tests this week to determine if it has spread. I am not sure if the PET scan is one of them. She is having a CT scan, bone scan and heart tests.

She is already back to work almost full time. We are splitting the duties. I am doing the research and she is keeping a great attitude towards the fight. Good thing I am doing the research because what I have found for our situation has had a negative impact on my attitude. It appears that attitude is almost as important as the medical treatment itself.

Questions

1) Has anyone taken Herceptin along with the drug Ellence (Epirubicin)? I know that adriamycin and Herceptin increases the heart condition (decreased left ventricular efficeincy) Ellence is in the same class as adriamycin but has reduced heart risks. Doxcil was another drug in the adriamycin class that showed fewer heart problems, but other nonlife threatning problems existed. Anyone with experience with this drug?

2) What other durgs were given along with Herceptin as part of the initial chemo? Was it CT?


Here is a clip from some research.

An updated analysis from an international clinical trial of the drug letrozole was presented on June 8, 2004 at the American Society of Clinical Oncology annual meeting in New Orleans. With additional follow up now available to a median of 2.5 years, letrozole (Femara) was found to be effective in reducing local and distant recurrences of cancer, as well as new breast cancers, regardless of whether the patient's cancer had spread (node-positive) or had not spread (node-negative) to the lymph nodes at the time of diagnosis. The rate of distant breast cancer spread was reduced by 40 percent compared to placebo. Most importantly, with the additional followup available for this new analysis, letrozole now shows an improvement of 39 percent in overall survival for node-positive patients.

Again, thank you for all the information from the previous posting.

Good luck to all,

Shaeff

[Lyn]

Hi Shaef, I was diagnosed in 1998 with a very agressive ugly fast moving form of BC I had a radical mastectomy which meant I lost my chest muscle and pectoral muscle with 16 out of 16 nodes all positive without a clear maragin and I was not eostrogen responsive so I had just about everything against me. I have surgical clips because the muscles that were removed were what is suppose to hold my arm on, didn't even know I had them until I could feel a pinching in my chest from nerve damage, anyway I was given 2-3 years at best. Well I can tell you it has been a bumpy ride and I didn't even know about Herceptin until I was already about 3 years into treatment and I had reoccurences non stop in the lymph glands and the skin. I am strongly HER3 positive and although an ugly diagnoses one of the best candidates for Herceptin, I have heard of a HER4 but have not heard of one on this site yet, anyone like to put their hand up. After all the treatments I have had I think if I had to start over again, I would have the big guns first, Herceptin/Taxol/Carboplatin. I have been through heart failure unrelated to Herceptin and my LV was fine, I started back on Herceptin when I got out of hospital and took Aromasin as I was aware that there was no evidence of BC anywhere at the time, that was short lived because when I was concerned about a lump in my neck I was diagnosed with a thyroid disorder and this was what the lump was put down to, treatment for the thyroid was what put me into heart failure 3 valves. When back in line with thyroid and heart fine the lump was still there and investigations found there was a lymp gland deep in my neck, still nothing with the lump I could feel and could be seen. Treated the lump and I still have this lump on the side of my neck which was put down to radiation damage but the lump and rubbery feel of the neck was there before the radiation, so chiropractor who put my neck back in place or as best he could said it was radiaiton damage as well, I hope and believe it is fatty tissue as I read of something similar and when the biopsy was done it was fatty tissue. My tumour markers CA15+ have always been under 30 my scans clear so on paper I am NED a lot of the time but I am not, bottom line attitude has a lot to do with this demon and as I have mentioned in earlier post I am now looking into hypnosis to unlock the brain cells that instruct the cells to mutate into cancer to be trained to mind there own business you might say. One thing I know is if you feel uncomfortable with your onc you are already behind in this journey, mine is brilliant and always open for my theories.

I hope we are able to make your wife's membership to the BC club an easier journey.

Hugs Lyn

[Christine MH]

Hi Schaeff,

It sounds like you have been busy!

I just wanted to make sure that when you asked "Has anyone taken Herceptin along with the drug Ellence (Epirubicin)?" you meant "Has anyone taken herceptin with chemo right after ellence. MD Anderson has done a phase one trial combining FEC, which is epirubicin-based, with concurrent herceptin, announced at ASCO 2004, but I haven't yet heard of anyone getting that combo outside of a trial (because of concerns about anthracyclines and herceptin, even though the patients on the MD Anderson phase one trial didn't have the problems, still phase one trials are small ).

It is wonderful that you are doing so much for your wife, but I know that dealing with alot of articles can be stressful. I think that there must be a rule that every article on her2 breast cancer must state that it is associated with a poor prognosis. I have a number of bad factors in addition to Her2+ (ER-,PR-, diagnosed soon after having a baby, diagnosed under forty), so I know what it's like. However, I think it is important to keep in mind as you read any articles that new treatments, particularly herceptin-based chemo and aromatase inhibitors, have been clinically proven to make a huge difference to patients like your wife.

Hang in there,
Christine MH

[sassy]

Dear Schaeff,

Please be aware of the recent advances in her2+ treatment when looking at research. Much has changed since the ASCO release in May, so informtion prior to that time may not be current. I have learned to check the dates of all information I find and take that into consideration.

Sassy

[*_Christine MH_*]

Well, put Sassy. That's what I was getting at towards the end but I blathered on a bit there.

[Shaeff]

Again,

Thank you for your quick reponses.

I did mean Herceptin with Ellence (Epirubicin). It appears that Ellence does not have the same effect on the heart as adriamycin. I know that Herceptin and Adriamycin is bad when taken together. I saw one study where sever heart complications were over 25%. But I haven't come across any studies where Ellence and Herceptin was taken together.

Christine MH, it is real stressful when every article about her2 is so negative about it. I guess that is why I am doing the research and not my wife. We need her attitude to be a positive as possible.

Sassy, I haven't seen a lot of research articles that are after May about HER2 that can be usefull now. There was one big study published June 2, 2005 about HER2 but I haven't seen anything since. If you know of any please let me know. If you haven't seen the June study results i can post them here, siince it was from the NE Journal of Medicine and I was able to access it through work and not on the regular internet.

Lyn, hang in there. From what research I have done it appears that you are right in that a positive mental attitude is just as important as other treatment options. I believe that hypnosis can have a great positive effect.

Good luck to all and thank you for your responses.

Shaeff

[sassy]

Look on this site under ASCO updates forum for early stage her2+ herceptin info.

Sassy