Herceptin Use and Prognosis for Stage IV

[callen03]

I was just recently diagnosed with Stage IV Breast Cancer. I had a bilateral masectomy this January, and I am paricipating in a clincal study (Herceptin, Doxil, & Carbo). My doctor told me the average is 2 years of remission, but I am hoping to be in the higher numbers. That group everyone together regardless of age, health, etc. I am in great shape other than the cancer, and Lord knows I want to live.

I am 49 and raising a 12-year-old grandson who needs me. I also take care of my elderly mom. I am scared too and find it hard to stay positive when all the stats are negative. Let me know if you find some positive stories we can share.

[jelevin]

the whole thing is scary and thats an understatement. I am her 2 positive and started a trial at NIH which lasted one treatment when my echo-ejection fraction went down to 149 and they'd only treat me at 155. any one else have that and ever have it go up and when??
next step is navelbein? thoughts
i am stage 4 with liver and bone mets.
thanks, Joan

[chrisy]

Hi Joan,
You might want to try posting your question on the main board, more people will see it there and you should get some good feedback.

Some more information would also help.
What chemo regimens have you already had? There's lots of chemos out there, so knowing what you've done will help people comment.

What is the NIH trial about (what are you getting?).

The echo ejection fraction - do you men Left ventricle ejection fraction (LVEF)? which is measured with either an echo or MUGA scan. Usually this is between 55-70. So if your LVEF dropped from 55 go 49, they would need to address that. Below 50 is generally a signal of cardiac damage but this (when it is a result of Herceptin toxicity) is almost always reversible although you have to stop Herceptin until it rebounds back to the normal range. This can take a few weeks to a few months.

Don't know if this helps at all, but again, try posting on the main Her2group board. Just go to the top and click on "thread starter"

Take care
Chris

[Annlyn]

Hi. Life just gets better and better!
It is now nearly 8 years since my diagosis in 1998. I am ER-PR-her2 +++, had approximately 30 spots on the lungs in 2001 and an erosion at T9. I have been on Herceptin since that time. After 11 weekly doses with taxol weekly there was no clinical evidence of disease so I changed to Herceptin alone, weekly till August 2005 when I transferred to a 3 weekly dose. I have also had Aredia 3 weekly since 2001.
I have never felt better!
Good Luck with your journey
Annlyn

[sophie]

i was also told 2 years , but up to 10 if controled, i found this hard now DECIDED after a few months to start a tick list of all the things i want to do with my best friends (my 2 children, mum and dad, and my big sis and my friends) i am now just starting , i am off to Mexico on Tuedays !
thats number 2 , number 1 was to spend this christmas all together, and yes the list goes on. i have also took time doing memeory boxes for my two children, getting their birthday cards and wedding cards , engagement, first child and the list goes on. so i found this special because we are lucky in one way we can get things ready and prepare things. sorry for going on keep positive.
sophie

[Marily]

Cindee, I want to share a bit of what has happened to me. My left ventricular function went down to 21. I have a fantastic Cardiologist who with medication and careful watching has me back on Herceptin. Add a cardiologist to your Doctors. Also don't just accept one Dr's opinion, you must be strong and proactive. When you find information that you feel may be a benefit to you, ask questions! If you don't get answers (ones that make sense to you ) find someone who will give you a better explanation why you may or may not fit that treatment and than decide. My cancer was very aggressive and 2 months after I was diagnosed, I had gone from a small lump to stage IV breast cancer, highly er/pr positive and highly her2pos...+++ My tumor was 7.5 cm and the skin of my breast was firm, red and warm. I had lymph node involvement, a tumor in my liver, and Mets to lung and bone. Luckily, My new Dr was on the cutting edge of breast cancer care since we did not have much to go on. We have forged a path and continue to do so today. As I look back now, many of the things she did are what now is considered the treatment of choice! I was never told what I read or researched was not going to work. She would listen and say lets try it and see if you believe it will work. We found some very good things that helped that way and also a few that did not. I have had a mastectomy , a failed tram, due to infection, but had a great plastic surgeon who closed up my chest wall very nicely, and finally at 55 had my ovaries removed since they were still fully functional, so I could go on Aromasin, and off Tamoxaphin. My family has longevity on it's side and so we found my age can not be considered in a lot of decisions (my family is young for their age lol. I have two who lived to be over 100 and many in their late 90's) therefore I had to break a lot of misconceptions. There are no comparisons with cancer! My heart went down to a 21 ejection fx AFTER three and 1/2 years of Herceptin. It also came back to above 60 with rest and my cardiologist's knowledge of medications. I went back on Herceptin. I have developed an allergy to Herceptin now after 6 years but with the help of a very learned Oncologist's suggestions, I am still able to take it, and await Lapatinib. At present I am 6 years NED. Today I had genetic counseling due to the fact I might have the BRACA 2 gene, after someone doing a study looked into my family history. Volunteer for studies if you are able..... I continue to research, my Dr's watch carefully with Pet/Ct and Mugga and now with Elysa/Bayer test for her2 elevation, and we continue to remain aggressive and proactive. Be positive, laugh and learn all you can and strongly advocate for yourself. Also do it now, don't wait for later. It helps to do things you want to do and live your life to the fullest. That positive thinking and the fun you have doing things with family and friends helps you to be strong and healthier.
Hugs from Marily
(6 years living life with love, laughter and going strong.)

[Brenda_D]

I've purposefuly not asked for a "time estimate", because I don't want statistics to mentaly suggest to me that I only have X amount of life left to live, when that may or may not be what will really happen.

[Marily]

I had a friend who was given 1 month... she got angry and told the Doctor ... you do not know this, the only one who knows this is God... She lived another year and it was a good one.

[fullofbeans]

Just finding out about being stage 4 is distorting, I certainly did not take it well, I was also told that I had a few years to live, at first I beleive what they said but then I realised I am not a stat. I agree with all postings regarding how important it is to be agressive, informed and I would add beleive that it can be done. I particularly agree with the posting saying that you should focus on wellness and not your fear.

I was diagnosed with 6 tumours in August 06 and I am now a NED. It was my goal, I made it a mission, I knew I wanted the tumours out. I told my oncologist that I wanted to be cured and that it should be their goal to.

There is a small chance that mets never recur (something like 3% have a 15 years followed up survival) and with new drugs such as taxotere/herc this is increasing. I beleive and know that I am in that percentage and so should you. I am doing everything to try to increase it (healthy food, supplements) so my bodies knows thru these rituals that I am on his side and that it is loved, it might sound weird.

Lots of love
Karina