HER2 positive?

toni61

I have HER2 positive breast cancer. I have had a masectomy 10 days ago. I am trying to decide whether to go on clinical trial of Herceptin. This would be along with regular chemo treatment. Any one ... I need help .

hummingbyrd

Absolutely, yes do it! I was HER2+ also AND asked for herceptin to prevent spread of cancer and couldn't get it because it's 'not indicated' for prophylactic treatment yet. (Treatment of the HER2 tumor before it spreads) Now I'm on herceptin, have been for over a year, because I have bone mets. I was diagnosed 6/00, 1st bone met diagnosed 8/01. I'm a Physician Assistant, I've done the research, I feel my cancer would NOT have metastasized IF I had been given herceptin to begin with. It is a very effective antibody that fights the HER2 tumor cells, and I personally have no side effects. Now the chemo will make you sick, but I don't think the herceptin + chemo will make it any worse. My vote is take it, I would have! God bless, and in everyway let the Lord guide you, hummingbyrd

jeancmici

hummingbyrd said:

Absolutely, yes do it! I was HER2+ also AND asked for herceptin to prevent spread of cancer and couldn't get it because it's 'not indicated' for prophylactic treatment yet. (Treatment of the HER2 tumor before it spreads) Now I'm on herceptin, have been for over a year, because I have bone mets. I was diagnosed 6/00, 1st bone met diagnosed 8/01. I'm a Physician Assistant, I've done the research, I feel my cancer would NOT have metastasized IF I had been given herceptin to begin with. It is a very effective antibody that fights the HER2 tumor cells, and I personally have no side effects. Now the chemo will make you sick, but I don't think the herceptin + chemo will make it any worse. My vote is take it, I would have! God bless, and in everyway let the Lord guide you, hummingbyrd

Hummingbyrd,

I have HER2 +3 - and had AC and taxol. I've read that adriamycin is very effective against HER2 + and as you said, herceptin is saved now for mets.

I'm wondering how you knew you had bone mets - from a scan or pain or? I never had a bone scan - I was told mets are not treated until symptoms are noticed. Obviously everyone's doctor does not think this way.

However my treatment appears to be the current protocol via the NIH and ASCO - the theory being that survival is not affected by finding mets early or late. That does not make sense to me. It's like repairing the roof when it falls in instead of with the first leak.

What's your opinion?
thanks, Jean

hummingbyrd

jeancmici said:

Hummingbyrd,

I have HER2 +3 - and had AC and taxol. I've read that adriamycin is very effective against HER2 + and as you said, herceptin is saved now for mets.

I'm wondering how you knew you had bone mets - from a scan or pain or? I never had a bone scan - I was told mets are not treated until symptoms are noticed. Obviously everyone's doctor does not think this way.

However my treatment appears to be the current protocol via the NIH and ASCO - the theory being that survival is not affected by finding mets early or late. That does not make sense to me. It's like repairing the roof when it falls in instead of with the first leak.

What's your opinion?
thanks, Jean

Does that not sound crazy or what?
Let's see,
"I don't think it will make any difference if we treat this bone met that we found today OR if we wait a year. Outcome and survival time should be the same don't you think doctor?"
In my book that ranks right up there with:
"faith and a positive attitude doesn't make a difference in survival rate" yeah right! WRONG!!!
It was by the grace of God that we discovered my bone met. My tumor markers were going up so they wanted CT of lungs/abdomen and mammogram. I called and told my docs nurse I wanted bone scan too. She said u don't need it, u aren't having any bone pain.
BC metastasizes to BBLL (brain,bone,liver and lung) most commonly.
I said tell him I'm "adament about the bone scan" so he ordered it.
Bingo, there it was in my right arm, thank God I listened. I know it was God that gave me the persistance to want the bone scan.
It was actually read as negative! BUT my mammogram was + for a suspicious lump in other breast. AS they were packaging up my films of mammo to take to onc, rad MD asked if I wanted to look at bone scan? I said sure, I know there are hot spots and cold spots, but how do you know the difference? She's pointing out things to me when she says "are you having ANY pain in your right arm?" I said a little, mainly with movement, but I've been pulling up weeds and just thought I had pulled a muscle. She had not seen the SLIGHTLY darker area in my arm before, and I mean it was slight. She got a plain film x-ray on my arm and there it was a very noticeable tumor. It was so bad they, the rad oncs, wanted a rod put in my arm before they radiated it, but I said "NO" felt like that would disrupt bone marrow and spread the cells more.
Now, you tell me, did God have his hand on me that day or what. If it wasn't for the grace of God, my faith and a + attitude I wouldn't be here today.
The best advice I can give here is pray and follow your heart. Combine that with good doctors, and doing your own research, getting a 2nd opinion if you think you need one, and let God do the rest!
AND you're right, of course you want to repair the roof when you first find the leak, not after it falls in on you. In our case you really want to get on the roof and see if there are any signs of a leak before it starts leaking!
This is just my opinion, in no way am I held liable for my opinion or any others expressed on this website. This opinion does not reflect the opinions of the ACS, NIH or any other cancer organization. LOL Just had to through in a disclaimer!
My advice is free, so take it for what it's worth. But I am walking the same road you are, I do have some medical training and I research a lot! Plus, I stayed at a Holiday Inn Express last night! LOL LOL LOL
Seriously, if you think there is something wrong have it checked out. Also, if you're not getting them already, you may want to ask your doc about tumor markers. When all is said and done take it to the Greatest Physician of all, He's the one who will be healing you.
God bless, keep the love of Jesus Christ in your heart and the Lord's angels of mercy and healing around you. Hummb
Sorry I was so long winded, but hey you asked for my opinion! LOL

hummingbyrd

jeancmici said:

Hummingbyrd,

I have HER2 +3 - and had AC and taxol. I've read that adriamycin is very effective against HER2 + and as you said, herceptin is saved now for mets.

I'm wondering how you knew you had bone mets - from a scan or pain or? I never had a bone scan - I was told mets are not treated until symptoms are noticed. Obviously everyone's doctor does not think this way.

However my treatment appears to be the current protocol via the NIH and ASCO - the theory being that survival is not affected by finding mets early or late. That does not make sense to me. It's like repairing the roof when it falls in instead of with the first leak.

What's your opinion?
thanks, Jean

By the way, Jean, I had AC and taxol too.

jeancmici

hummingbyrd said:

Does that not sound crazy or what?
Let's see,
"I don't think it will make any difference if we treat this bone met that we found today OR if we wait a year. Outcome and survival time should be the same don't you think doctor?"
In my book that ranks right up there with:
"faith and a positive attitude doesn't make a difference in survival rate" yeah right! WRONG!!!
It was by the grace of God that we discovered my bone met. My tumor markers were going up so they wanted CT of lungs/abdomen and mammogram. I called and told my docs nurse I wanted bone scan too. She said u don't need it, u aren't having any bone pain.
BC metastasizes to BBLL (brain,bone,liver and lung) most commonly.
I said tell him I'm "adament about the bone scan" so he ordered it.
Bingo, there it was in my right arm, thank God I listened. I know it was God that gave me the persistance to want the bone scan.
It was actually read as negative! BUT my mammogram was + for a suspicious lump in other breast. AS they were packaging up my films of mammo to take to onc, rad MD asked if I wanted to look at bone scan? I said sure, I know there are hot spots and cold spots, but how do you know the difference? She's pointing out things to me when she says "are you having ANY pain in your right arm?" I said a little, mainly with movement, but I've been pulling up weeds and just thought I had pulled a muscle. She had not seen the SLIGHTLY darker area in my arm before, and I mean it was slight. She got a plain film x-ray on my arm and there it was a very noticeable tumor. It was so bad they, the rad oncs, wanted a rod put in my arm before they radiated it, but I said "NO" felt like that would disrupt bone marrow and spread the cells more.
Now, you tell me, did God have his hand on me that day or what. If it wasn't for the grace of God, my faith and a + attitude I wouldn't be here today.
The best advice I can give here is pray and follow your heart. Combine that with good doctors, and doing your own research, getting a 2nd opinion if you think you need one, and let God do the rest!
AND you're right, of course you want to repair the roof when you first find the leak, not after it falls in on you. In our case you really want to get on the roof and see if there are any signs of a leak before it starts leaking!
This is just my opinion, in no way am I held liable for my opinion or any others expressed on this website. This opinion does not reflect the opinions of the ACS, NIH or any other cancer organization. LOL Just had to through in a disclaimer!
My advice is free, so take it for what it's worth. But I am walking the same road you are, I do have some medical training and I research a lot! Plus, I stayed at a Holiday Inn Express last night! LOL LOL LOL
Seriously, if you think there is something wrong have it checked out. Also, if you're not getting them already, you may want to ask your doc about tumor markers. When all is said and done take it to the Greatest Physician of all, He's the one who will be healing you.
God bless, keep the love of Jesus Christ in your heart and the Lord's angels of mercy and healing around you. Hummb
Sorry I was so long winded, but hey you asked for my opinion! LOL

Thanks a lot, Hummb. I appreciate your thoughtful reply. Think you probably guessed that I have not had tumor markers either.

The questions about bone pain made me think of something the nurse practitioner said the last time I was there. she said bone mets are not treated until you have pain.

BTW, I'm going to a comprehensive cancer institute ranked among the top ten - Hmmm!

well, time will tell.

hummingbyrd

jeancmici said:

Thanks a lot, Hummb. I appreciate your thoughtful reply. Think you probably guessed that I have not had tumor markers either.

The questions about bone pain made me think of something the nurse practitioner said the last time I was there. she said bone mets are not treated until you have pain.

BTW, I'm going to a comprehensive cancer institute ranked among the top ten - Hmmm!

well, time will tell.

Good for you!
The best action if affirmative action! It never hurts to get a second opinion. The NP is right, it is essentially unheard of to have bone mets without pain, but I did. The met in my low back had completely destroyed the right pedicle (part of the vertebra(bone in my spine)), here again my back hurt only if I picked up something heavy. BUT that was unusual for me, after about 8 weeks of this, I asked for another bone scan. There it was to the surprise of my MDs. I've been a 'challenging patiet' to my onc, as he put it. At first he resented my questions, asked me one time "what is it with you and these package inserts?" I read up on every drug he gives me. He's come a long way though I must admit. I'm really proud of him, now he has a magazine in his office waiting room called C.U.R.E. A wonderfully informative magazine. Now when he comes in my room he asks "What's new on the internet. I know you've got something." Last time I had info on the bacteria protein from psuedamonas, azurin, (sp?I think). Anyway he wrote it down and said he was going to look into it. So you can teach an old dog new tricks. Trust me, no one cares about your body, or your health as much as you do, except God. Keep me posted on what happens. God bless, hummb