IBD recurrances

[tsiet]

I am hoping someone out there can help me with my questions. I am 42 years old and I was diagnosed with IBC in my right breast over 4 1-2 years ago. I went through 4 months of chemo then I had surgery to remove the breast which was then followed by more chemo and finally with 4 months of radiation. I was told I was in remission and to continue with routine check ups. I continued my check ups until 4 months ago when I was told the cancer had mestasised into bone cancer in my rib cage. At that time the doctor switched me from arimidex to tamoxifin and he started me on monthly treatments of Zoemta. I was told I am stage 4 but an early stage 4. My question is that the docotr keeps insisting that the tomoxifin and zometa are all I need to get well. For someone who has been through chemo and radiation I am concerned that the doctor is not doing enough. I am a single mom with a 15 your old daughter and I don't want to take an chances. I have had one doctor tell me to get out of state where I live because the doctors are not the best and to move to Illinois where the treatment might be better. I am wondering if anyone has used zometa or if maybe I should see another doctor for another opinion. I am just struggling with the fact that a pill is all I need. According to the doctor, zometa is not chemo it is just a treatment for rebuilding the bone. I am having lots of doubts and need to know what others think. thank you in advance for any help you can give.

[Joe]

Where do you live? What is your HER2 status? Tykerb is a new drug which is currently being considered for approval by the FDA which has shown promise with IBC.

Here is a good start:
http://www.clinicaltrials.gov/ct/search?term=tykerb%2C+inflammatory&submit=Search

Regards
Joe

[tsiet]

HI Joe,
I currently live in Las Vegas Nevada. I have never been told anything about HER 2. I am not even sure what all it means. All I have been told is that my cancer was hormone positive which is why I was originally put on Arimedix. MY originally doctor told me arimedex was more beneficial then tamoxifin because of I was hormone positive but now my doctor has me on tamoxifin. Nothing seems right to me which is why I am so confused and feel like I am getting the run around. Any suggestions would be appreciated.

[Joe]

Do you have a copy of your pathology report? That would be most helpful.


Regards
Joe

[peytons mom]

Dear Joe,

I have a problem. My MD has tried to get me on Tykerb, but I don't meet one of the requirements. Originally, I did the TCH route and didn't have a cycline. My MD wants me to start doxil pending a good MUGA on Wed. I have IBC HER2 and Hormone negative. Mets on breast skin, liver and brain. I really need the tykerb! My liver is good after navelbine and hercetin, my skin so so, and my brain clear after WBR.


My question is this, should I try the doxil and have a difficult time of it because chemo is never easy for me. Or could I wait for tykerb is released?

Melissa

[Sandy H]

Melissa, it would seem to me you should start something now as Tykerb may not be released until March. That would be too long to wait. Maybe, you should get a second opinion. Let us know what you decide. hugs, Sandy

[tsiet]

Hello Joe,
You responded to a question I had a few months ago and I couldn't give you an answer to the question you asked until now. It turns out my original oncologist never ran a test to see if I was HER +. My current oncologist had the report done a few weeks ago and it came back that I am HER+ and I do qualify for Herceptin. My doctor decided 3 months ago that the Tamoxifien I was on wasn't working so I started radiation to reduce the pain and I will be starting Herceptin in 2 weeks. I know I am in for a long battle but at least my doctors are now doing something about it. I finally feel like I am fighting this in a more positive manner. Thank you for helping ask the right questions.

[betlen5]

Teri

I was also 42 when i was first diagnosed with insitu ductal carcinoma Her2+ in the right breast. I received A/C 4x 38 rads after having a lumpectomy. Herceptin was not available at that time that I know of. I think if it had of been maybe I would not have had 4 reocurrances to go through.

Please let me know if this works for you. I have wondered about this for 4 years.

I will keep you in my thoughts and prayers.

God Bless...

[kat in the delta]

Joe,
DO you know when Tykerb will be OUT on the market for use? kat in the delta

[Sandy H]

No one knows until it is released. Joe will post as soon as he knows so keep watching the board. hugs, Sandy