Want to talk with ER/PR neg and HER2 pos - Page 2

rinaina · 01-04-2007, 02:05 PM

Hi Catherine, I was as confused as you are in the beginning but that is the beauty of this site. You will find just about all you need here. I too am er/pr negative, node negative, stage I. Feel free to contact me by email if you ever need to talk.

Brenda_D · 01-24-2007, 03:49 AM

I am also ER- (0) PR- (0) and Her2 + (3)
I'm just beginning my journey into treatment.

Wendywins · 08-31-2007, 12:28 PM

Those who get to have herceptin should take heart! It sounds like the best treatment.
Taxol turned out to be the worst in terms of side effects (ie bad effects) on me...and so Herceptin sounds soooo much easier to take and recover from.

For taxol tips, check out this site and others. It and it appears that the carrying agent for taxol ( rather than the taxol itself )may be harder on folks in terms of joint pain, burning palms/soles, puffy feet, neuropathy and the shooting pains etc.. Not everyone gets these effects but those who do need to let their doctor know so that possibly the dosage can be reduced or alternative formulations if any considered , I think. Sounds like some get this kind of reaction from taxotere?as well.

Longterm affects from taxol on joint pain, feet etc can be alleviated but many oncology docs do not seem to have a clue as to how so sites like this are great to find ways to cope , compensate, alleviate. I had to do a lot of hunting to find out that I was not "the only one" who had these affects . Doctors are apparently assured by drug companies that the adverse reactions are extremely rare and thus assure patients that the affects are rare and if present will disappear quickly and are flummoxed in cases where 90 days later or more, they are still present. There are simple things one can do for oneself...which aid greatly in comfort and recovery. One is simply changing to "wide shoes" with minimum sides ...like sandals or earth shoes even if one has never worn them before... Trust me, its like a miracle for those who have been in foot pain from taxol. Life is great when you can WALK again!!
Warm weather and warm water exercise also helps joints. I personally prescribe a warm dry climate and swimming in warm water! If you can, you owe it to yourself.

tousled1 · 08-31-2007, 12:42 PM

I'm currently on Taxol and must admit that I found Taxatore much harder to deal with. I think a lot of it is the amount of Decadron that you are given as a premed. I get less decadron with Taxol than I did with the Taxatore.

gracelmj · 08-31-2007, 02:37 PM

Is this site only for Cancer survivors? My mom was diangosis with Breast Cancer alittle over 5 years ago and now resently found 4 cm mass in left lower lobe of lung and 2 cm mass in adreanal gland. She had a PET scan done, but no results yet. Does anyone know if Radiologist "impressions" holds much value? Or do we need for Pet Scan results to come back before knowing for sure if she has cancer. Based on all the finding, a nurse said "It doesn't look good, we need to pray it's not 4th Stage". That sounds like "cancer for sure". I have the Finding Report if anyone knows how to discifer it.

Worried, Dazed and Confused
Linda
Fairfax, VA

tousled1 · 08-31-2007, 03:27 PM

Linda,

This website is for cancer survivors and their caregivers. Radiologists are trained to distinguish cancer masses from benign masses. The best test to check for metastic cancer is a PET/CT scan. My lung mets were found by a routine CT scan and my brain met by a routine brain scan. Cancer is a very scary disease and is very unpredictable. When does your mother have a follow up appointment to discuss the results of the PET scan? the worst part of this dreadful disease is waiting for test results. I'll keep your mother in my prayers. And if it is Stage IV there are many treatment options available. Don't give up.

Catherine · 08-31-2007, 09:25 PM

Linda,

I am not sure who is in charge of your mother's treatment. My radiologist was the least helpful, and had a bad, bed-sider manner. He was a know it all and refused to share the truth.

I received the best information and referrals from my oncologist and my surgeons. I was scheduled for all the pt scans, cat scans, mris and pelvic ultra sounds.....etc. These doctors wanted to know what was going on in my body once I FOUND THE TUMORS IN MY BREAST. Make sure you are working with good people. Do not get too scared. There are wonderful options and treatments for all of us.

All the best, CAtherine