Getting Herceptin

[Shannon]

Good Evening Ladies!!!

I have posted here before, mostly last year, and now I am back. I check in the sites at least a couple of times a week, and post when I see someone needs some advice, as a been there done that kind of gal...
But, now... I find myself in need of guidance...
I was diagnosed last year at 33 years old as stage 3 B. five nodes positive, and only her2neu positive, not hormone positive. I completed 4 rounds on AC and 12 weeks on Taxol then the tanning of the skin in 8 radiation spots. I finished chemo in October last year and radiation in January.
I was at my first 3 month check up on Tuesday and was told the amazing news, that my doctor wants me on herceptin. I am in a little pickle with being in the herceptin clinical trial in the arm of standard treatment and observe. Well, then I also lost 16 points on my MUGA going down to the lowest of a 42. I am back up to a 53 right now, with another test tomorrow. I may drop out of the study to go forward if they do not support my MUGA results as I did drop significantly...
But here is the deal...
I had a meltdown on the way home from the hospital.. my friends and family are supportive, but I dont think they get what I went through last year. I am not back at 100%, but I feel I am on my way. Weekly treatments for a year is a HUGE committment.. dont get me wrong, I am going to do EVERYTHING I can to beat this and stay on top, so it isnt like I am waffling at the thought of treatment, but can anyone understand the emotional drain that goes with it????
I am looking for someone that has moved forward, is out of treatment, and how they are doing with it. I dont see in looking at Herceptin side effects that they are as "dramatic" to the eyes as the chemo last year.. for example hair loss, fatigue.. but if someone can let me know, maybe even validate what I am feeling, I would sure appreciate it!!!

Much love to all...

[Soccermom1955]

Dear Shannon,
I just wanted to sympathize with your indecision re: weekly Herceptin after Chemo. I am just finishing dose-dense AC/Taxol and am also having a hard time contemplating a YEAR of WEEKLY treatment! I was so looking forward to getting the port removed, being "normal", etc.
I am just beginning this "journey" so I cant comment on much else!
I will be thinking of you and looking for your posts!

Warmly,Marcia

[*_Tessa_*]

Dear Shannon,

I would really say - go with the Herceptin. Except for the inconvenience of going in and getting the IV (probably 90 minutes each time) you will in all likelihood feel NO side effects, no hair loss, no appetite loss, no energy drop, no nausea, nothing, except for possibly some sniffles. Plus, knowing you are getting this targetted therapy will make it much easier to sleep, much easier to feel confident that you are doing what has to be done to banish the cancer.

Of course one is loathe to go back to the hospital every week, I disliked that too, but it is really worth it. When you go in you will feel like a well person, just getting some good stuff, not like a cancer patient getting, basically and unavoidably, some poison.

[StephN]

Hi Shannon -
Nice to see you again and great (!) to hear that your heart is doing better now (I recall your shock and dismay last year when the heart problem surfaced).
I have been fighting now pretty much constantly for almost 5 years now. But I do vividly remember how I was "allotting" a year of my life for the surgery and treatment process for my BC.
Just as I was getting my stamina back to close to normal I was greeted with the news that my liver was seriously involved with tumors. That was a shock. I knew about Herceptin at that point, and so wished I had been able to have it as it could possibly have prevented such a quick metasteses.
In other words, I barely got off treatment and was thrown back to square one. My pathology is the same as yours, and I was warned that the chance of the cancer coming back in some form within five years was rather high.
I have been on tri-weekly herceptin for almost 3 years now and tolerate it very well. It is completely painless, and the only thing I notice is maybe a little flushed later in the same evening of treatment. I have no effect on my hair, skin or nails from the herceptin. Not even the sniffles - my allergies take care of that. I take coenzyme Q10 and this seems to help my heart as there seems to be no side effect of that kind for me. (And remember I have been on it 3.5 years all together.) Just had my 56th birthday, and look forward to many more.
Try to get past the feeling that you would still be in "treatment" as you knew it before. I don't consider Herceptin a chemical in the same was as the chemos - but a life-saving component that has an ability to fight my cancer in a way that my body cannot.

[Judy]

Shannon:

This is my first posting, but I wanted to give my feelings about Herceptin. I understand your feelings about wanting to get back to a normal life. I feel the same way. But I have not had any second thoughts about Herceptin.

I was diagnosed last August. I had 3 tumors in my left breast and had a double mastectomy with reconstruction in September. The pathology report showed three grade 3 IDC tumors, all ER-/PR-, HER2 strongly positive (+++), 3 positive nodes. Surgery was followed by 4 doses AC (every 3 weeks), 12 weekly doses Taxol. At the very beginning, my onc agreed to give me Herceptin, off-label. Last week, I began weekly doses of Herceptin which will continue for 1 year. My feeling about all of the chemo (AC, Taxol & Herceptin) is: give me all you can! Every person is unique, but, for me, the side effects didn't really matter. The only important thing for me is reflected in a sign we have hanging in our family room: "Keep your eye on the prize." That's what I'm trying to do every day. I finished the Taxol 5 weeks ago and remain very very tired, with sores on my hands. But every day is getting better and better. I went to my office every day this week. I haven't done that in months and months. I'm planning my first business trip for late June and am trying to get back to that normal life you mentioned. But I will make time for the Herceptin in that life. I think I've been very aggressive in my treatment since the beginning and don't want to miss out on anything that will increase my chances of survival. I have a wonderful husband, 6 terrific children (3 plus their spouses), 2 grandchildren and another expected in a week. This new grandchild was conceived the weekend we told my daughter of my diagnosis. I want to be around to play with them all.

I wish you the best good fortune and peace of mind as you make your decisions. I believe strongly that the decision that's right for me may not be right for other people. I respect everyone's choices in this situation.

Judy

[*_Cathy_*]

Dear Shannon, I know exactly how you feel. I think meltdowns come with this territory. BC has given me an enitrely new perspective on life. I would have to say that it is actually a Gift that has caused me to reexamine everything in my life and what is really important. Everyone is fighting a battle of some kind or other. Ours is a physical one for our health. I will tell you what works wonders for me. I go to daily Mass and Holy Communion. That's what gets me through the day to fight this battle with Joy, Patience, Courage and Persistance. I was very confused as to how one could find joy in suffering. Then I began to see little miracles everyday in the people I know.Loving acts of kindness,those offering prayers and meals, watching people return to their faith. I beleive God uses us in important ways to help others return to Him.-And in this process, we are also growing closer to Him. I am really beginning to see a little glimpse of Jesus in all of His children. When I receive Holy Communion, I am the closest I can be to Heaven on earth. God also gives me the strength I need to carry on and I feel extremely blessed with the knowledge that whatever happens, He is in complete control looking out for my best interests. He is truly my Daily Bread and the Way, the Truth and the Life. Always trust in Him, Shannon.He loves you as if you were the only one on earth and He holds you in the palm of His Hand. God Bless You- Cathy

[*_Cathy_*]

Hi Shannon- I forgot to mention that I was in treatment five years ago for breast cancer. I was fine until last month when I had a petscan. I was started on herceptin two weeks ago. So far, no side effects. God Bless- Cathy

[*_Shannon_*]

Thank you ladies...
I have since been back to my normal self. Well, what I consider normal now.... but I have had since two heart tests.. another muga.. which my results came in at a 49 and today an ECHO. Its hard to believe that I lost 4 points in 6 weeks from my last Muga and I have been out of treatment since last October... so who knows what is going on with me.
I want you all to know... I am doing / going to do what ever I can to get herceptin... I just wanted to know is it common to have a meltdown..
I had my day that I cried, just as I did when I was diagnosed, and i am ok now...
i anxiously await the doctor visit next week to get going on all of this...
Thank you again for your validation that even though I have battled cancer... I am still after all human!
Shannon