Interesting information!

I wanted to share with you a conversation I had yesterday with Dr. Salazar at U of W in Seattle. I was calling to find out about a vaccine I might qualify for. I am IBC with skin mets. She told me I was not stage 4 (no organ or bone involvement) that I am still a stage 111b which is specific only to IBC. The vaccine that I was interested in is given with Herceptin only but one needs to be stage 4. She also asked me why I was on Herceptin for skin mets because there is no data that show Herceptin will work for patients that are not stage 4. She also said it is very, very toxic and why use it when it maybe, needed at stage 4. No data shows Herceptin keeps mets from going to bone or organs. She said people are thinking its a miracle drug, and it is, only for stage 4. I was a little frustrated with my oncologist because he kept telling me he has seen some servere damage to the heart from Herceptin and it made him very nervous to use it long term. Now, I feel better about him feeling this way. He is trying to protect my quality of life at this point. Just when I think I must know it all by now something new comes along. Don't know if anyone on the board will learn anything here but it was suggested by a member here to post it. Hugs, Sandy

[Lolly]

Sandy, that IS interesting. I'll have to ruminate on this info for awhile, but to know that the team that's conducting the trials on the Her2 vaccine has such reservations about long term use of Herceptin is a little sobering, to say the least. Thanks for sharing this, it's very valuable.

Love, Lolly

Hi there, that is really weird, how long do they consider long term?I think I must be the same as you, my IBC is invasive though with involment in lymph glands and skin mets, had a radial mastectomy in 1998 with 16 out of 16 gland all positive no clear margin and not hormone responsive. I have been on Herceptin for as long as I have been on this site, I think about 3 years +. I must be a freak because October 2003 I had heart failure in 3 valves, my heart ws pumping backwards and I was on death's door but my left ventricle was not effected and the heart failure was from thyroid treatment, a simple treatment like that was deadlier for me than the Herceptin, I resumed it as soon as I was able to when leaving hospital so in total I was off it for about 5 weeks but I was on triple doses every 3 weeks. I believe that the Herceptin for me has prevented the cells getting past the lymph glands and only remains in the skin tissue and the glands, well that is what I am hoping and praying is happening. I am now NED and my echo in November said my heart was smaller and was stronger and better than the previous echo 3 months earlier with no leaking valves to speak of, now I have to work at remaining NED.

Love & Hugs Lyn

Lyn I wouldn't get too bummed out on this. I believe long term means anything over a year. She said that to get Herceptin for anything other then for stage 4 needs to be done through a trial and then its for a year. You are doing well and NED that is the main thing. Everyone is different with these drugs. I had 44 Herceptin treatments and with the recurrence of skin mets it was felt that it was not working and he said lets stop it and save it for later. He said where treatment options for IBC is so limited no need to use it now if we don't have to. I have heard lots of positive from this board about Herceptin. That was a question I did have would Herceptin prevent it from going to the organs or bones. My oncologist said no one knows, the other one said there is no data that shows it will do that. She said that may change in another 3 or 4 years. I had a bil lateral mastectomy in 2002 with 44 of 45 nodes pos. hormonal neg. no clear margins. It is my understanding clear margins are not obtainable with IBC because it is a lymphatic disease so my surgeon told me! It is interesting and I am always open to what others have to say about this disease. Thank you reponding and hope you can hold onto the NED forever!! Hugs, Sandy

[Rozebud]

Interesting. I'm sure there are no conclusive studies about it preventing mets. But then why would MD Anderson pull their trial and give ALL stage I-III patients neoadjuvent herceptin if they didn't believe it would prevent recurrance? Especially if it is that terribly toxic? I mean, they will give it to you without lymph node involvement.....even if your recurrance risk is in the single digits.

You took the question right out of my mouth, Rozebud!

Can anyone who was in San Antonio shed some light on this?

A.A.

Hi, you did have a lot of lymphs removed, no one seems to know how many lymph glands we have. I know my surgery for 16 was extreme, do you have a lot of pinching and pulling with your nerve endings as well.. with all the radiation I had I thought I was going to run out of lymph glands but I was told no, at least the ones remaining go back to norrmal after treatment.

Love & Hugs Lyn

Hi
Would just like to say that i am on the hera trial for stage 2 breast cancer with node involvement.....i am being treated at one of the best cancer hospitals in the UK 'The Royal Marsden'.......my senior oncologist has worked with Herceptin for many years now and he told me that Herceptin is no way near as toxic on the heart as was once thought.....in fact i have Muga scans every three months which have shown my heart has actually improved!!!!
He said that the highest risk was to women who already had an underlying heart disorder and to those who did an Epirubicon based chemo first (which i did).......the heart problems usually show themselves in the first year and if at that time you have no problems it is highly unlikley you ever will.
As for the recurrance issue, he also told me that herceptin is an excellent drug at controlling stage 4 and he see's no reason why it wount be of great benefit to stage 2/3.
This guy is somebody i respect entirley, he is one of the leading breast cancer professor's in the world, i trust his word.
Regards
Nikki

I was only sharing what was told to me. I am not agreeing or disagreeing with anything she told me. She is only going by the data she has access to and she says that may all change in 3 or 4 years. She says those people that get Herceptin for stage 2 or 3 are getting it in a trial in this country. I don't know if anyone here on the board is getting it out of trial or not. Remember when its in a trial its still been studied. Hugs, Sandy

Lyn I do have pinching and pulling under the arm and around the chest wall. I only had 5 radiation treatments. Each person has a different number of nodes my surgeon told me. The doctor in Lymphedema clinic told me when a person has radiation under the arm the nodes that remain are damaged so I didn't feel bad when I lost as many as I did as they would be useless anyway. My thinking only. I do well managing the discomfort by wearing a sleeve daily, lift no heavy objects,( greater then a gallon of milk or 5 pounds) I try not do do repetitive motions with the arm however, I do like to knit and crochet but I do it in moderation and take lots of breaks. Hugs, Sandy

I had herceptin at stage IIfor a year without trial. My insurance company said that if my doctor ordered it, go for it. I did fine while on it. after the year was up, I was off and recurred 11 months later to lung, nodes and brain.
Mickey

Dear Sandy,

Your oncologist is right. My mom has been on herceptin since 2000 for lung and liver mets. She was taken off it in 2003 because a mugascan showed a weakened heart muscle which interfered with her blood pumping properly. After she took a break though, her heart muscle strengthened up and she went back on herceptin again. Now her latest mugascan showed muscle damage again so she's off it now. I really believe that for Stage 4 it's a great drug with relatively few sides affects compaired to other drugs.

Take Care,
Penny