oncs/herceptin off protocol/depression in thr D.C. area??

[Anita]

Hello, Im new to the board but have been reading messages every day. I greatly admire the courage of everyone here. You ladies are so strong, that somehow you infuse your courage in me.

Im newly [Jan 2004] diagnosed with bc: ER/PR both strongly positive, her2neu +3, Grade III tumor, 2.5 cm, multifocal with 2 smaller tumors [3 and 4 mm] and node negative. I have had bilateral mastectomy with the immediate free TRAM flap 4 weeks and am still recovering from the surgery.

I would love to get into the herceptin trial but dont know if I will. So my question is: do any of you ladies know any oncologists who will prescribe herceptin off-protocol in the Washington D.C. area? I have so far approached 3 oncologists, none of whom will agree to do so.

I would also like to know if any of you have kind and caring oncs in the DC area. One of the oncs. I went to gave a long lecture as to how he could be investigated by the AMA board for not giving the same standard of treatment to ALL his patients. He bluntly told me that even with treatments, I had more than a 30% chance of getting BC back in 5 years! He scared me so much I ran out of his office sobbing like a kid. The 2nd onc. did not seem to have the time to talk to me. The 3rd onc was a bit more responsive but would not give me herceptin off protocol.

I am even willing to travel short distances [upto New York], if I can get it every 3 weeks...cant afford the every week type thing.

Finally, I am having some really bad depression mood swings. I cried nonstop for 6 weeks after my diagnosis...in public places such as grocery stores, privately and in front of my kids [ages 11,13 and 17]. I was fine a week before and 3 weeks after my surgery. Now for the past week I am again sinking into deep depression. I take effexor and wellbutrin, but it does not help. I read everyone's stories on these and other boards, and find it sooooo sad reading about young women with mets and very young children. Knowing that my case has great prognosis does not help. I feel so badly that so many women are suffering so much. And I dont understand where their courage comes from.

I dont talk about my feelings to anyone, since all my friends and family expect me to be strong...I have always been strong... but I cant seem to be able to cope much lately....I put on a great front, but Im dying inside...

so0rry for the long-winded email. I just hope that each and everyone of us can grow up to be little old ladies....

Anita

[Carlye]

Hi Anita,
First of all I want to tell you that you have come to the right place for support. These ladies and gentlemen are wonderful and so knowlegable. I am fairly new here as well and this site is so informing and the ppl are so caring. I was dxed in sept 2001 with stage 2a er/pr pos and her2+++ as well. I did 6 rounds of AC, rads then 6 rounds of Taxol. I did not get herceptin at the time but my doctor has now agreed that he would give it to me off protocol. He doesnt really believe I need it now since I had pretty aggressive chemo but he said if it would make me feel better he would. I don't know maybe if you really like your onco and are persistant he may change his mind. I am also from Kansas but I did all my reconstructive work in Baltimore at Mercy Hospital with Dr. Bernard Chang. He came from John Hopkins. I also know there is a new Women's health building where his office is and a breast center where I know he strongly reccomends the onco there. You might try there because its very close to you. Dr. Chang and I have discussed alot about my her2 status and he said the oncos there he feels are very aggressive. If you were to call his office I am sure they would help you. He specializes with women with BC and works with many of the doctors. Also the feelings you are going through are very normal. Eventually your bad days will get less and less and the good ones will prevail. I am 21/2 years out and though I think it about it every day it does not rule my life anymore. I just want to make sure I am proactive because knowlege is your number one power!! If you have any questions you can email me anytime and I would to talk you more. Keep your head up and know we are all here to help you anytime!! Big hugs to you!!

[jeff]

Hi Anita,

Sorry you have to be here, truly.

My partner Rachel was diagnosed in Dec. '02 with a very similar diagnosis to you. I did loads of research about herceptin and off-label use. Please email me off list (melnick@babson.edu) because I might be able to give you some useful information.

Best,
Jeff

[Carlye]

Hi Anita,
First of all I want to tell you that you have come to the right place for support. These ladies and gentlemen are wonderful and so knowlegable. I am fairly new here as well and this site is so informing and the ppl are so caring. I was dxed in sept 2001 with stage 2a er/pr pos and her2+++ as well. I did 6 rounds of AC, rads then 6 rounds of Taxol. I did not get herceptin at the time but my doctor has now agreed that he would give it to me off protocol. He doesnt really believe I need it now since I had pretty aggressive chemo but he said if it would make me feel better he would. I don't know maybe if you really like your onco and are persistant he may change his mind. I am also from Kansas but I did all my reconstructive work in Baltimore at Mercy Hospital with Dr. Bernard Chang. He came from John Hopkins. I also know there is a new Women's health building where his office is and a breast center where I know he strongly reccomends the onco there. You might try there because its very close to you. Dr. Chang and I have discussed alot about my her2 status and he said the oncos there he feels are very aggressive. If you were to call his office I am sure they would help you. He specializes with women with BC and works with many of the doctors. Also the feelings you are going through are very normal. Eventually your bad days will get less and less and the good ones will prevail. I am 21/2 years out and though I think it about it every day it does not rule my life anymore. I just want to make sure I am proactive because knowlege is your number one power!! If you have any questions you can email me anytime and I would to talk you more. Keep your head up and know we are all here to help you anytime!! Big hugs to you!!

[Jean]

It is normal to be depressed at the beginning. I had this when I was dx in 1998.it was so scary and I could not help to cry all the time. but after a while I realized it was just a chronic desease you have to deal with it. You still can have a normal life! There are so many new drugs available which will make it manageble. My experience was I never discussed it with my friends, my collegue, since cancer in people's mind is a deadly desease, you do not have to explain to them all the time. The less you talked about it the better. It will give some time to get used to it and over youself and not let it bother youself anymore. Once you recoveried from the surgery, you will feel much better, then you will be able to resume your normal life. This site is a great site you can release your feeling since people here know how you feel and also can provide you a lot of useful information which can help you in making the decision. Do not burden youself into worries about reccurrence, instead try your best to prevent that happen. Why not thinking you might be in that 70% not having reccurence at all! Plus you have no nude involved. You should be ok. I always thinking this way, if something bothers me, do something about it to get rid of it. If I did every posible thing I could, but still not working, forget about it! Life is still going on. Leave it to tomorrow when I have a way to handle it! We are unlucky to have BC, but we are lucky that it is much better treatment now than ever that this is just a chronic desease!!! Hope this will help you feel a little better.

[Cindi]

Anita,

Concerning the statement of not being able to talk with your family and friends about your fears...I can relate. I was 41 at Statege 2A diagnosis (am currently a 2 year survivor) and there were very few people with whom I could be "real" with. So, for about 10 months I went to a wonderful phsycolgist. At first I saw him about twice a month and then later just once a month. It helped me learn more coping skills and "moving on" with my life. That saying "Time heals all things", is really true. I don't dwell on my cancer diagnosis as much as I used to, now that I am out of treatment. It's always there, but not in the forefront of my day. I had AC/Taxol and then 52 weeks of Herceptin (in trial). God Bless you.

[Beth]

Jean,

You have a wonderful attitude, what stage are you?

Beth

[Jean]

I never really try to figure out what stage I am. But I know I had stage IV. I am fighting my reccurence right now. Mets to lung in Apr. 2003. Had taxetere/herceptin for 6 months(from June to feb. 2004), then novelbine/herceptin (from end of Feb. till now!). First combo worked for a while , stopped working. This one seems working, will have better view until next scan later in Apr. Still working all the time. Very tired recently, just started injection of Neupogen this week myself. I did try to feel my body all the time. Pay a lot of attention to what I should eat.Rest enough. This is all I can do now. I tried my best, if it works, great! I did get a lot encouragement from this site, thanks to all of you!

[Berta]

Dear Jeff
I have tried to send you an e-mail to ask you for some of this imformation about off label use of herceptin, but my e-mail was returned - said that there was something wrong with the direccion, a loop or something like that.
How do I get in contact with you?