HERCEPTIN FOR STAGE ONE NODE NEGATIVE PATIENTS

[SPARKY]

Hi everyone, I am new to this web site and desprately seeking info. I am Stage 1, node negative, 1.2cm, grade 3, pr(weakly positve), er positive, HER2 positive.

My oncologist will not give me Herceptin because he has not read of any benefits to stage 1 people. He told me to see what info I can gather and he would read anything I gave him and told me to get a second opinion if I wanted.

I'd like to hear from others who have similar situations who were given Herceptin. I'm from Chicago so if anyone has an oncologist out here I can receive a 2nd opinion from I would appreciate their name. Also, I can't find anything anywhere that says it is only recommended for stage 2 and up cancers.

Any help is much appreciate.

Mary Kay

[Janet/FL]

Howdy
My onc believed in Herceptin but would not give it to me unless I could get a major cancer center to recommend it. I am stage one. I finally switched oncs and am supposed to start it, along with Taxol or taxatore next Monday. This onc made it very easy to get. His research assistant did all the work for smoothing the way. It should be approved for stage one within the next few months and clinical trials will begin then, I guess. My advice if you want to stay with your onc, call Genentech, the makers of Herceptin and ask them to send you and your oncologist all the data he might ever wish for.
Good luck. I am just hoping I am not dreaming and when Monday comes, I will be getting Herceptin.
Janet

[Cheryl]

Dear Sparky,
I am also stage one, ER+, 1.7cm, node negative, HER2+, grade 3. When I originally asked my Onc. about herceptin back at the end of April, just after the trials had been haulted early (info. I got from this website, incidently, you have found a great resource) but before the ASCO conference on May 16, she said she could not find any benefit either. That was on a Monday. On Friday afternoon her nurse called me and said she had been to a conference of international experts at the University of Minnesota, where I live, and had presented the question to them. I don't know exactly what was said, but she called to say they had said no breast cancer patient should be denied Herceptin. Incidently, 1/3 of the patients in the HERA trial, which is internation, are node negative. This trial continues at this point, and I have not seen specific data to date for the Node negative patients, but someone here may have. Also, I believe it was 12% of the two US trials involved node negative patients, but no seperate data was presented on them.

I am going to try and send you a link to the virtual ASCO meeting. If it doesn't work send a message to Joe, the administrator of this site and he may be able to do it better. He's a pro. Or you may find it at the ASCO updates message board below this one.

http://www.asco.org/ac/1,1003,_12-002511-0...0_21-001,00.asp (http://www.asco.org/ac/1,1003,_12-002511-00_18-0034-00_19-005813-00_21-001,00.asp)

Best of luck to you,
Cheryl

[karen w]

Hi Sparkey,

I am also stage1, 1.3 cm tumor, node negative, no vascular invasion, er+ (highly) pr+(weakly), grade 3, Her2+++. I completed 4 rounds of AC/T dose dense, I am in the 3rd week of radiation and I receive Herceptin every 3 weeks. My doctor did not feel that I needed Herceptin. He felt that the risk outweighed the benefit because I have a good prognosis. I did not feel comfortable with his decision, so I decided to get 2nd and 3rd opinions. I went before a tumor board with 3 oncs on the board and then went to Stanford University and met with an onc there who is involved with the Her2 vaccine and is also involved with the Her2 trials. Out of the 4 oncs I saw, 3 thought I should do Herceptin.

When I went back to see my doctor, He had, had a change of heart. I am glad, because I would have changed doctors.

Karen

[Susan]

I'm also Stage I, Grade 3, er+, her2+. My oncologist sent me to the University of Michigan for a 2nd opinion, I also went before a tumor board, and they determined herceptin would benefit me. I just started chemo, will have radiation, and then i'll have weekly infusion's of herceptin for 1 year. I also had the oncotype test done, which came back high risk for reoccurance. Good luck to you!
Susan

[mts]

Hi-
My cancer is just like yours. My onc wanted to get the "go ahead" from a center before he gave it to me and he wanted me to pay nearly $6,000 per infusion because he said the insurance would not pay. I switched oncs and I go in for my 2nd Herceptin infusion next week.
New oncs reasoning: High risk, node negative patients with a tumor equal or greater than 1cm were allowed in the trials... therefore, why not on our own after the trials? AND as long as Herceptin is FDA approved (which it is); there is no reason for insurance to deny.
I also found that if I have to pay for it myself it is only about $500 per infusion at my new oncs office. He gets a "bulk rate".
I contemplated switching oncs in Jan when I was undergoing chemo. I should have followed my gut instinct... Had I done that, I would have had Herceptin then.
Follow your gut instinct and NEVER "fall in love" with your onc!

[Janet/FL]

Mts writes
My cancer is just like yours. My onc wanted to get the "go ahead" from a center before he gave it to me and he wanted me to pay nearly $6,000 per infusion because he said the insurance would not pay. I switched oncs and I go in for my 2nd Herceptin infusion next week

******************************
******************************

Your onc sounded just like mine. And I am glad I dumped him, too!
I start my first infusion next Monday. Could you please tell me what your protocal is? Just Herceptin, or with taxol or taxatore? And how often for each? What pre and post meds are you given? Did you do chemo ike AC first? I didn't, am node negative, ER/PR postive tumor 9 mm.
I know I can influence my new onc so want all the information I so I can help make decisions.
I have gotten and MRI of my neck and a bone scan but just asking this onc. Not begging and pleading and groveling and listening to lectures like my old onc would have done--and then probably turned me down!
Your name, please?

Janet

[suzan w]

I had an 8mm tumor-invasive lobular...bilateral mastectomy...will start 6 rounds of AC next week...had oncotype DX test-intermediate risk of recurrence, ER+,PR+,Her2+++, node neg.. My onc. said she would do herceptin after the AC if I wanted it. I am thinking I want it!!!

[suzan w]

I had an 8mm tumor-invasive lobular...bilateral mastectomy...will start 6 rounds of AC next week...had oncotype DX test-intermediate risk of recurrence, ER+,PR+,Her2+++, node neg.. My onc. said she would do herceptin after the AC if I wanted it. I am thinking I want it!!!

[suzan w]

I had an 8mm tumor-invasive lobular...bilateral mastectomy...will start 6 rounds of AC next week...had oncotype DX test-intermediate risk of recurrence, ER+,PR+,Her2+++, node neg.. My onc. said she would do herceptin after the AC if I wanted it. I am thinking I want it!!!

[suzan w]

sorry...for 3 posts...computer screwing up!

[*_Victoria_*]

Hi

I strongly encourage you to get a second opinion. I too have very similiar characteristics as you and have completed 6 mons of Herceptin, with Carboplatin and Taxol. However, I will recieve Herceptin only through this December.
I feel so confident about Herceptin for us HER2 patients. Find a Doc that feels confident using this a s a treatment protocol for Stage 1.

Victoria

[Michelle]

Mary Kay-
We have a very similar diagnosis. I'am a patient at U of M here in Michigan. My case went up in front of a tumor board and all were in agreeement about herceptin.I personally am very happy with this decision, and had I been told differently -well, I would have a new oncologist at this time.
Even though I'am stage 1,my onc. felt strongly abuot the herceptin.It all comes down to what you believe is the best treatment for you.As a patient you should have some say in your own care.Best of luck to you.
Michelle

[mts]

Sparky: sounds like you are on the right track- oncs are just like us. Sometimes they don't see what is right in front of them. A second opinion (and even 3rd) opinion never hurt anyone. My 5th opinion onc gave me the Herceptin

Janet: Hi
MTS is for Maria from Central Florida
My Herceptin protocol: is just plain Herceptin. I go every 3 weeks for a year- not sure of dosage (goes by your weight?) I already had 4AC's and 4Taxols -finished chemo in March; finished rads in May. Currently in "chemopause". Onc is thinking about giving me Taxol with the Herceptin. I am young and in superb health. I already had the Taxol- but I am trying to get an eensy bit to mix with my Herceptin just to say that I did EVERYTHING I could.

I take tamoxifen (I'm 42 yrs old) Dx'd last year. I also take Effexor for the hot flashes... turns out my kids don't have any problems since I got on that drug!
Eventhough I am only 5% ER+ and PR- onc says Tamoxifen would provide a minimal benefit (which is better than zero).

I am concerned: about possible tamoxifen resistance when taken w/Herceptin ...?
If ones adipose tissue (fat) still releases estrogen in Menopause, how then is an AI and not Tamoxifen still prescribed?

I am considering ovarian aablation. I can't stand the thought of even 5% of me feeding my own cancer. Being node negative is a good thing- but I have read on this website about many women developing Stage IV after being Stage I. But then also read that many women in Stage IV are "maintained" like a diabetic.
I am glad you found an onc that is willing to give you what you want. I think I have "chatted" w/you on another website under the pseudo name "muffinhead".

stay well- Maria

.

[Janet/FL]

Hi Maria

I am ER/PR + so no tomoxifen for me.
Already had all those female things removed--endometrial cancer three years ago. Maybe because I am older but I have had few problems with stopping hormones. Memory problems and now with chemo will it be worse?

You mention adding "an eensy bit of "taxol" to mix with Herceptin. Very interrsting thought. I wonder if there have been any studies on using less Taxol when used with Herceptin. Sure would be nice.

Anyone know if there is any advantage to using Taxol or Taxatore?

Janet


My Herceptin protocol: is just plain Herceptin. I go every 3 weeks for a year- not sure of dosage (goes by your weight?) I already had 4AC's and 4Taxols -finished chemo in March; finished rads in May. Currently in "chemopause". Onc is thinking about giving me Taxol with the Herceptin. I am young and in superb health. I already had the Taxol- but I am trying to get an eensy bit to mix with my Herceptin just to say that I did EVERYTHING I could.

[Cheryl]

Adding Taxol to Herceptin does add benefit, I know it is considered of greatest benefit during first round of chemo, but don't know about it when coming back in. I receive 1/3 of the regular dose of Taxol weekly with Herceptin for 12 weeks. I had just finished 4 rounds of AC, so I can't really tell you what the side effecfs of the 1/3 dose of Taxol alone would be ie: hair loss, etc. because all that had already happened from the AC. I can tell you that the Taxol is quite tolerable, the steroid given with it are worse for me. 12 weeks seems like eternity after 8 weeks of AC, but I'm almost there, on #10 right now, and I can now say, it doesn't last forever! There is an end in sight. I will be on Herceptin weekly for the remainder of one year. I posted here earlier giving you my dx. Stage one, node negative.....
Not sure if I told you that I had not received any response from insurance company yet regarding payment for Herceptin. Still waiting that one out.

[dpang]

Unfortunately, my wife did get a denial from UnitedHealthCare for Herceptin Coverage. She is Stage 1, Her2+++, 1.5cm, ER/PR-, We are in the process of appealing via Stanford Cancer Center where she got the Chemotherapy Treatment. We were told that the cost if we have to pay ourselve could be like at least 17,000 per infusion. It would cost us a whole lot. Can you please let us know where do you get the 500 dollar per treatment? We'd appreciate it.

Thanks.
- Danny

[SPARKY]

Thanks for everyone's input. Unfortunately, I don't have insurance right now so I am being treated at a public hospital in Chicago. I'm very grateful for all the treatment I have received so far. I got an email from my doctor yesterday who said he was running my case by Dr. Cobleigh at Rush Hospital so I'm waiting to hear back. I'll let you know what they say.

[mts]

Danny- $500 herceptin infusion... this is the amount that my onc in Orlando FL said it would be if my ins did not pay. I will say that my ins did not want to do a predetermination of benefits,but did say that it would cover any drug that is FDA approved (Herceptin is). I will know in maybe a week whether or not Herceptin is covered. I certainly believe that $500 per infusion is a lot better than the $6000 per infusion another doctor wanted to charge. You can email me at tootsie@strato.net for his name.

Maria