One Last Request

Maryanne · 02-12-2006, 08:30 AM

Dear Members and Guests,

This past Sunday's chat on Late Herceptin sparked an idea which we are hoping all will participate in.

As you well may know there are early stage members and guests who did not receive Herceptin with their initial treatments or directly after. A conflict now exists as to whether it is benefical to receive Herceptin after one year out of treatment.

In light of this we are asking members and guests to take part in contacting their oncologists and asking how long out of initial treatment are they willing to give Herceptin and if there are variables, what would they be. We would then comprise a list of oncologists, cities and the above information and make it available to all requesting it. This would allow all to have the opportunity to get a second opinion as well as change oncologists to a more agressive and/or progressive one if they choose.

If you would like to participate in this you can email me directly at MWhite84@optonline.net or Becky at phollis@att.net

Thank you in advance,
Maryanne and Becky

Alice · 02-12-2006, 09:33 AM

I dont go back to my onc until April.I know her feelings on herceptin are that it should be given mainly with chemo and without chemo only to stabalize and stop progression in stage 4.We have had many discussions on the subject as I was in a study showing the affects of herceptin when given with chemo.When I go back I will confirm this and if I am wrong I will ask her if she would want to be on a referal list.Personally I feel she has been top quality in my case and would refer her to anyone.Good luck in your endever.

Alice

Maggie · 02-12-2006, 01:18 PM

Maryanne,

I received an email from you and Becky and responded to you the other day!
I hope he has some input!

Thanks to you both,
Maggie

Maryanne · 02-13-2006, 09:19 AM

Sending this to the top again, Hoping to get more responses,

Thanks,
Maryanne

juanita · 02-14-2006, 06:20 AM

I don't see the onc for another three weeks, but have herceptin today so I printed off your posts and will take it with me today.

Barbara2 · 02-14-2006, 12:49 PM

I will add a note in order to keep this going a little while longer. I started herceptin about 2years, 2 months after completing chemo. My onc and I had many discussions before determining that I could/should start herceptin. The results from the trials are what convinced him that late herceptin was the right thing to do.

Would he offer it to anyone looking for an onc that would give it to them? He is a reasonable man who wants the best for his patients, and after becoming familiar with the case, if he felt herceptin was warrented, yes, I believe he would give it to them.

I live in north east South Dakota, so I doubt that many will seek him out; we are quite "rural." But I will forward further info to Maryanne, should anyone need to know more.

Barbara

lia · 02-14-2006, 01:06 PM

I will ask my (uk ) oncologist next week for his opinion, I know someone who finished chemo last may who is going to get herceptin soon ,when it has been decided who will pay ! Good Luck !

saleboat · 02-14-2006, 01:37 PM

I'd be happy to ask my Onc the next time I see her, which is in two weeks. I'm sure that Sloan (where I'm treated) has a 'party line' on this dilemma.Jen

02-14-2006, 03:28 PM

Hi,

i see my onc next week and will ask her.

Olivia

TriciaK · 02-14-2006, 04:27 PM

Add me to the list who will check this out at my next visit with the onc in about three weeks. I will be interested in his answer. My onc put me on herceptin, navelbine and femara immediately after lung mets showed up in June of 2004 and there was a her2 positive, er-pr positive, test. At that point I had never heard of herceptin or her2 so I am really grateful he was so on top of things. This round of lung mets showed up after 15 years without any tests or treatments except tamoxifen. Prior to that I had had BC that was NED for 5 years until mets showed up in my spine. I do not know if either previous BC was her2, probably not. I was post menopausal during all three rounds of BC. I can imagine the frustration of believing in herceptin and not being able to get it! I think the list you are compiling will be most helpful. My oncologist is Dr. Jon Rubach of Desert Oncology in Mesa, Az.and he has known me for 20 years! I'll send you his answer as soon as I can ask him. Hugs, Tricia

Cathya · 02-14-2006, 04:31 PM

When I was tested for Her2 my onc said that I qualified as I was metatastic. This was before it was standard treatment for early stage. Now everyone is tested and I understand that there is a one year cutoff after the end of chemo. When I saw my onc last week he commented that they really don't know how long to prescribe herceptin (there is a recent study indicating the positive effects of 9 weeks vs a year...Finland I think he said) or when the cut off should be. His assistant told me that I was very lucky as I qualified to receive herceptin indefinitely. Right.....lol

Cathya

jjfromcanada · 02-15-2006, 02:10 PM

I started 2 years and 9 months after I completed chemo. I am ER/PR- so it is all I have. Not sure if that influenced her decision. I also had an oncologist in the US prescribe it.

I do not see my oncologist until late March, but I will ask her then how far out she would be willing to give it.

saleboat · 02-27-2006, 04:37 PM

I spoke with my Onc today. She confirmed that 'in general' Sloan-Kettering is calling back early-stage patients for late-Herceptin who completed chemo within a year window. Hope that makes sense and is helpful.

Jen

02-27-2006, 05:21 PM

Hi Everyone,

I had an appt. with my onc. and she said she would treat Stage I node neg within say 9 months and maybe later stage, node positive within 1.5 years. She is in Baltimore and is outstanding!

Olivia

Lolly · 02-28-2006, 09:55 AM

I see my oncologist today and will take him a print-out of the request for his consideration.

Lolly · 03-01-2006, 10:55 AM

I sent my oncologist's response and contact info to Maryanne via e-mail, but wanted to post here also, for general information and to bring this thread back to the top:

Late Herceptin for Early Disease:

"for adjuvant therapy after chemotherapy would depend on lymph node status:

0 LN - up to 1 year after chemo
+ LN - up to 2 years after chemo"

DEBBIE S · 03-01-2006, 01:43 PM

Hi, All .... I do not see my onc till later this month and I will ask her. I do know from talking with some of the nurses there is one patient who has been on herceptin alone for over 4 years now ..... don't know all the info but she had bc that had spread to liver and another area and is doing great .... for myself I have been on herceptin from my original date of 11/11/04 ... was on herceptin only for a short period of 3 months but by bc returned in another area of the same breast ... we then added navelbeine with the herceptin and did every other week through 11/05 ... now I do the treatment every three weeks and will have another scan later this month.

DeborahNC · 03-01-2006, 03:01 PM

Asked my onc today. She has called her Her2+ patients (all stages) who have been out of chemo for up to 2 years back in to receive Herceptin. She considers anyone else out for longer than that on a case by case basis.

Neglected to add that she said if she were Her2+ she would be beating down doors to get Herceptin. She's convinced that it is saving lives and should not be withheld.

Barbara H. · 03-02-2006, 04:37 PM

Hi,
I asked my oncolgoist, Dr. Parker, at the Dana Farber today and he does not feel that late Herceptin helps. He didn't say whether he would give it because it is not relavant in my case.
I was 6 years out before mine came back, but he believes it was probably back after about 3 years and grew very slowly. Right now Herceptin is working for me by itself, but he feels that down the road I will have to deal with adding something else. This is not what I wanted to hear today.
Who knows?
Best wishes,
Barbara H.