ER-, PR-, Her2+ Roll call
Comments
-
Hello everyone. I try to come back to this site once or twice a year just to report my progress. Because when I was frightened and stressed , this site was enormously helpful to me . You can tell by the stats below that my prognosis was not very positive. But here I am over 7 years from surgery. I had chemotherapy, radiation, and one year of herceptin for my stage 3A HER2 cancer. Once I felt like myself again, I embarked on a regular exercise program with a gym buddy and I believe that this has been very helpful. On top of the treatment I received of course! So have faith!
0 -
Did any of you have dull headaches after chemo and occasional sharp stabbing pan in temple? Worried
0 -
evergreen9; thank you so much for coming back and sharing your story. It was greatly appreciated.
0 -
CENOK2017, Yes, I have headaches after my infusions. Do you get Zofran as a premed or to take after? It can cause headaches. MO gave me an RX for Hydrocodone when the headaches get bad.
0 -
Thanks mjb. What is worrying me the most is the intermittent stabbing pain in my left temple. Comes and goes all day long. Did you experience that too? No, I did not take Zofran. Thanks for any help.
0 -
I don’t recall specific stabbing temple pain, but the headaches were horrible. I tend to get hormonal migraines anyway, and they were worse than that Ask your MO about it, I’m sure you can be given something to help. So many weird SE from chemo. Pills to combat the SE of chemo and pills to to combat the side effects of those pills. I feel like a little old lady with a plastic bag full of meds. Crazy. Hope you get some relief soon
0 -
Evergreen9---you've made my day!!! Best wishes and cyber hugs for continued good health for all of us! Many thanks--keep posting--we all love reading your story over and over!
0 -
The stabbing pain has thankfully gone away!
0 -
I start Chemo on Friday. TCHP q 3wks and H&P q 3 wks for 52 wks. My MO told me HER2+ TARGETED therapy is very successful. What are the tx options available if H&P doesn't work?
0 -
I read that -- when treated with targeted therapies -- some studies have shown HER2 recurrence to be all the way down in the 1.3% range!
But if you're worried about "becoming a One Percenter", read this list of targeted therapies, and understand that still more are in the experimental stages...
0 -
Thanks for the information. Im Stage 2b. BMX with 1/18 node positive. Hormone negative and Her2+. Neg. genetics. My MO and SO both told me there is s 20% chance of reoccurance. Which studies have indicated a 1.3 % reoccurence rate? I would gladly take a 1.3% recurrence rate.
0 -
Jo, the treatment you have been prescribed is known to work well on this type of cancer and be tolerated well. There is nothing else you could do now, and worrying about it is just wasting your time. Good luck with the chemo, hopefully you won't get many side effects from it. If Herceptin doesn't work (i.e. you get major heart problems) there are other options, I think Kadcyla will be next, although I am not sure about it.
0 -
DATNYHave you heard anything about a 1.3 % reoccurence rate after Targeted therapy?
06elise-The statement seems to be very broad re: reoccurence rate. Do you recall which research study you read? There are so many factors which impact the reoccurence rate. Tumor size, hormone receptors, location of tumors, stage of bc, node involvement, etc. Prior to chemo tomorrow, I will ask my MO how he made the determination of a 20% reoccurence. Because 20% reoccurence sucks.
0 -
jo: My MO also gave me a 20% re-occurence chance. I agree -- it sucks!
0 -
Bellasmomtoo-Negative hormones and Her2+ . It does suck.
0 -
Jo, no, my MO never gave me numbers and I didn't ask for them. Statistics apply to a group of people, they won't give me any reassurance. According to statistics, I had 0.8 % ( no typo here) chance to develop breast cancer at this age, yet here I am!! Also, looking over this site, I saw stage 0 people with aggresive treatment coming up with metastasis in two years and stage 3 with dire prognosis being cancer free for 15+ years. So it's really impossible to predict. But, looking at the status of people with hr-/her2+ posting on this site, I feel encouraged.
0 -
Datny- you are so right about statistics. I didn't meet any criteria to develop breast cancer. Other thab being a post menopausal woman. As you said here we are. My mentor is 20 years plus free of breast cancer. She is hormone negative and her2 positive. She said the first year and a half were tough but doable. Now, she travels constantly. She mentors as a way of giving back.
0 -
Quote: "I read that -- when treated with targeted therapies -- **SOME**STUDIES** have shown HER2 recurrence to be all the way down in the 1.3% range!"
Does the emphasis help? SOME STUDIES, with new targeted therapies, appear to bring recurrence rates down even farther than they ever have been before. The 1.3 number came from a tech paper about combined therapies. Please do not broaden my claim!HER2 seems to be the factor that is being studied the most in BC-related clinical trials lately: probably because it is such an aggressive form of cancer.
When I was first diagnosed with it (two years ago), my oncologist told me that "this diagnosis **used to be** a death sentence; but now because of targeted therapies, it is the most survivable form of BC you could have."
Breathe, people! Breathe!
0 -
"There are three kinds of lies: lies, dammned lies, and statistics."
- Benjamin Disraeli
0 -
O6elise- I am making no attempt to broaden your claim. I was merely asking if you recall which study or studies in which you found that information. Because I would be very interested in reading the research data. Have a good one.
0 -
hi ladies
Hope you’re all doing good - I’m a year out now but experiencing daily constant (since a pet scan and breast mri 6 weeks ago - all clear) dull one sided headaches that seem to move from base of skull to top of head - no need for painkillers - did have dizzy spells last week but that seems to have eased off. No other symptoms apart from a tingly arm when I woke but think I was sleeping on it and a fuzzy head. Usual tiredness but still managing to get by the whole day without a siesta - have reported to team who seem blasé about it and say it could be hormones - no scan offered, my recent pet scan didn’t cover brain. My periods came back with k a few days beforw headaches started. Am I worrying over nothing. The uk don’t seems to scan as readily as the USA. When should I worry
0 -
Yay, evergreen9! Great to hear. I had your exact diagnosis, same treatment with the exception of breast removal. I had a lumpectomy and there was nothing in the path report except dead cancer cells.. But I now have doubts about the lumpectomy and if it was the best decision. Working out so far. Guess I just need a little faith.
0 -
Lilneenz, I have been experiencing a similar thing: "lopsided" headaches which vary in intensity, though never in location (always on the top-right of my head).
I've had a handful of days where the pain was intense enough to make me take an OTC pain reliever; but for the most part, it is a dull ache. My first bout lasted roughly two months (Dec-early Feb), but since then, only sporadically.
My oncologist ordered an MRI, with and without contrast. It showed absolutely nothing... which is excellent news, considering all possible causes (especially circulatory and HER2-related).
So although my team didn't seem nearly as blasé about it, they now dismiss it as hormone-related. (Sound familiar? Maybe it's true? Though I'm postmenopausal...)
They offered to send me to a neurologist if the intense headaches recur. I'll keep you posted. Please do likewise!
0 -
Hello, Just received my 2nd chemo treatment on Tuesday. Went better than first, partly due to port.
Had major migraine to Herceptin in 1st treatment, this time kept rate to 100 whatever.
But am having more frequent migraines since started chemo and asking neuro for additional phases of treatment.
First stage is Sumatriptan & Naproxen, but instructions are not more than 2-3 days a week, non-consecutive. Since headaches are more frequent or persistent than that, I'm asking neuro for further steps or "protocol". Haven't received helpful answer via portal questions yet.
I see others here having headache troubles and wondering what your treatments are, besides tylenol and tough it out.
0 -
Nem7az, I'm sorry to hear you're having more/worse migraines!
My chemo drugs were also known to cause headaches, but my oncology team was able to control them via "the usual meds." The headaches I'm experiencing now are coming on two years after my first chemo, and nearly a year after my last Herceptin infusion.
Wish I could be more helpful!
0 -
hi all!
My MO has recently prescribed anastrozole as a preventative measure to avoid the possibility of a new be occurrence. Anyone else have any thoughts or experiences with this protocol?
0 -
Thanks Evergreen for posting. May you, and all of us, be coming back for many more years.
0 -
I am on anastrozole too. If you dig there is some research that states that it may benefit ER PR beg too. Just had a clear CT scan so I guess I will keep taking it
0
