Herceptin or not, that is the question!

[CLTann]

Hi,


In your case, you have plenty of published data to show the efficacy of the Herceptin, plus chemo you already had. If you were in USA, there is no question that the Medicare or the health insurance company will pay for this, since this regimen is well known to show the excellent results in HER2 positive patients. Tell your onc to read the recent published article in New England Medical Journal (Oct issue, I believe). This is well publicized information and the news of this publication was aired in TV and newspapers throughout USA recently.


Good luck.

Ann

[Joannie]

Hi All:
Well, I finally had my onc. appointment this a.m. I left her office in tears. I told her I'm still debating to take Herceptin even though I'm 2 years and 3 months out of chemo (currently NED). She said "You know the data" doesn't support you taking it, but she will give it to me (not that she is recommending it). I told her that I don't want to live with regrets and I just can't seem to "get on" with my life because I wonder about this everyday. She told me she has a patient whose situation is very similar to mine and she went to the Mayo clinic for a 2nd opinion. They told her the same thing....blah blah blah, no evidence to show that it will help. She came back and is now taking Herceptin (her choice) through my onc. office.
This has been one of the hardest decisions of my life. At this point, I am leaning toward taking Herceptin beginning the first of the year. My other obstacle is that I have insurance through my husband's work. It is a very small company and due to all of my health claims from chemo/surgery, it has driven their prices thorugh the ceiling. To insure two families (mine and the owners), the policy cost $33,000 last year, of which the company paid $24,000!!! They are currently shopping for new insurance so I don't know what January will bring as far as insurance and if it will be covered. Currently, Anthem (my insurance) says they will cover it. So many hurdles!
As the nurse was drawing my blood today, I had this discussion with her. She said my onc. won't recommend it bc. she has the follow the NCI guidelines, however, if she were in my shoes, she would probably take it. She says it is very well tolerated and they would do Muga scans every 3 months. My onc. also said every week dosage is easier on the heart vs. every three weeks.
I want to thank all of you who continue to inspire me every day of my life. If I would not have found this website early on, I'm sure that I wouldn't even have the knowledge to even pursue things like this. I read this board daily and have found so much valuable information. Thank you for all you do, the support you provide, and the understanding of this disease that we all share. The funny thing is, no one really knows that I have been pursuing this drug. By that I mean friends and most of my family. I have only shared with a couple people who really understand. Everyone just thinks, it's life as usual. Little do they know what we live with day to day. God bless you all and thank you again for your continued support.
Joannie

[Gina]

and if you don't have any other tumor marker histories..are any of the following blood chemistries elevated at this time??

ALK Phos, liver enzymes, GGT, Grans, Neutrophils???

Try not to stress ... remember that there will be a certain percentage of folks who apparently will NOT mets. Your onc is hoping that you are in that group. I do too...Please take care and be grateful that you have been brave and strong-willed enough to negotiate your way to getting the Herceptin if you ever need to...GOOD WORK..it is NOT easy doing what you did. I must say I admire your "spunk" and find you a superb role model for others on this site. We all must force ourselves to speak up and speak out. It is OUR lives, OUR bodies, OUR ultimate Call.

My highest regards to you,

Gina

You sound a lot like me, AA. Are you going to get back into it again and see about the Herceptin? Please let me know as we have similar stories. XO Vicki

Hi Joannie,

Yes, these doctors and oncs of ours can be quite distressing to us. Your instincts are right on track, so if you feel that you will live a more calm and peaceful life knowing that you've taken Herceptin, then I say go for it and make sure the insurance matters get handled accordingly and hopefully this will give you some comfort and peace of mind. I'm going to talk to my onc. next month about the same thing, although I did take Herceptin for 12 weeks.

Happy Thanksgiving,

Vicki Z

[Valerie]

Hello Everyone,
I had my port installed yesterday and had my first herceptin infusion today. I feel good so far, three hours this time although the next ones will be every three weeks and only 90 minutes.
For the people who are farther out from diagnosis and did not get herceptin it is a tough decision. I finished chemo in 8/04 but decided that herceptin would hopefully help me stack the statistics in my favor just like chemo. Insurance can be a problem but remember though, peace of mind is worth a lot.
Valerie

[AlaskaAngel]

My onc has been open-minded about Herceptin for me and I appreciate that a great deal. At our last appointment I requested to delay starting until the new year for a number of reasons.

The responses to various questions I posed were impartial. The flexibility that IS there, perhaps is there because even though my onc does have a basis from personal knowledge of early stage patients, the answer is not really hard science. I was neither advised to do it nor advised not to do it and I welcome that responsibility for my choice and fate.

I think there are a pretty limited number of us who are actually aware what HER2 is, the importance of it, and our HER2 classification. I don't see any concerted effort being made in the U.S. to now test the many who were never tested, or to inform those who tested strongly positive that they did test strongly positive. Those who ARE aware that they "missed the boat" by being between 1 cm and 2 cm and node-negative probably aren't a big group, and probably in that group there are a number who are not interested in any more treatment.

I am listening to the discussion about the Bayer test to try to understand how it is best applied to me, before going in for the first treatment. If nothing else I would think it would help me as a measuring stick as time goes by.

I am also interested in hearing what comes out of San Antonio in December, and whether or not as patients our situation is going to remain a blank page in their discussions.

I am also interested in any progress that is being made that applies to HER2's in regard to use of the aromatase inhibitors and whether or not it is possible for HER2+++'s to extend their usefulness by using other drugs.

I haven't seen any convincing information to believe that HER2's don't usually recur farther down the road. Have you?

[amya]

Joannie and all;
I am in a very similar position. Dx in 3/03, mastectomy, StageIIB with 2 nodes +, HER2+++, grade 3. I was in the control arm of the Herceptin study (B31), received 4 AC, 4 TX, radiation and no Herceptin. When positive results came out in late spring, I started asking my onc about getting Herceptin and doing my own research. She advised against the Herceptin even after checking with many of her colleagues because I was 18 months out and there was no data to support benefits. I had accepted this decision and then this week received a packet from NASBP researchers with new consent forms. Study will pay for women who entered after April 04 As a group 1 patient randomized before April 26, 2004 the study will not pay for my Herceptin. The consent says "After considering this point (lack of data to support late use of herceptin) if you and your doctor decide that you want to receive Herceptin, you may do so." I am scheduled for a visit with onc next Friday. I am again in the position of trying to decide what to do. I am torn. Part of me is saying "Go For It" as prevention. The other is questioning if I want to go back into patient mode if it isn't absolutely necessary. I am a school administrator with 2 teens and a very busy life and am worried about side effects, time... I'm not sure if insurance would pay given this vague recommendation from study. I have been searching for other women who are in this Limbo, so I could seek advise about what I should do. I would so appreciate your input or any others'. The women posting here are so obviously informed, intelligent, and empathetic, I would value the input. Amy

[Joannie]

Amy:
I understand your position completley. It's difficult to choose to go back to be a "patient" when we don't even know what we are doing will help us or harm us. However, after much research, reading, praying, and reading posts from this board DAILY, I told my onc. in November I want to go for it. My latest dilema is Insurance. My current insurance will pay for it, but the company is changing insurance carriers the first of the year. I have had to table it until then and see what insurance will or won't do for me. I'll keep you posted.