Looking for Her2 Positive survivor stories
Comments
-
I had a comparatively easy time on TCHP - it made me sick and miserable, but never to the point where I thought I might need the ER. With that said I’ve done two cycles of H&P with no chemo so far and it is much, much easier. The only side effects I have noticed haves been a drippy nose and diarrhea, and the diarrhea isn’t nearly as uncomfortable or frequent.
0 -
Hi WorldGirl. I didn't get Perjeta after chemo, just Herceptin. According to my oncologist, the runny nose and diarrhea are usually caused by the taxanes which make the fine hair in your nose fall out and damage the rapidly reproducing cells in the gut. For me I think that was true, because those side effects gradually improved while on Herceptin. The worse side effect of Herceptin, however, was this untreatable itch on my arm (I tried everything, only ice worked) that developed four months before the end of Herceptin and nearly drove me mad. Thankfully, it was gone three weeks after the end of treatment. Sorry it's been a rough ridea so far, but most people find immunotherapy easier than chemo and it does wonders for HER2 positives so hang in there!
0 -
WordGirl- I also had a terrible time on chemo. Like you, never being sick before, I ended up in emergencies 2-3 times and had blood transfusion to hold up. But I tolerated the herceptin well. No comparison. I cannot tel about perjeta. Do not panic beforehand. After my horrible experience on chemo I was sceptical as well about herceptin but all went ok. I hope, it will be ok for you as well. One of the advice one of ladies here gave to me, continue high protein intake during herceptin as well. It helped fight the fatigue. You will be in my thoughts.
0 -
My Oncologist took prejeta out in my chemo infusions due to diarrhea. I have had 2 infusions of herceptin alone with no issues.
0 -
I have found H&P really tolerable compared to chemo. Minor side effects. I have it down to quick infusion of both and the whole session takes 2-2.5 hours all up. Don’t have any pre meds either. I have been ver fortunate. Hopefully your experience will be similar. Best wishes.
0 -
I had horrible diarrhea cycles 3-6 of TCHP. Once on HP I rarely experience it and have few to no side effects. I have my last HP infusion on Thursday! I found it very tolerable once TC ended.
0 -
Thanks everyone. My HP infusion was yesterday. So far, so good. They didn't give me any of the pre-medications or steroids so I suppose they're not concerned about side effects. With the four drugs I'd typically start to get really sick on day 3. Fingers crossed.
0 -
Thank you for posting - it was uplifting for me today!
0 -
Thank you to all of those coming back to offer us encouragement!
Srecliner--I love hearing how you are back to being active outdoors. I love to hike & ski and I'm starting to get freaked out with the neuropathy concerns people have posted. Reading your post allayed my fears. THANK YOU!
0 -
Dear her2journey,
Welcome to the BCO community. Tell us more about yourself and how we can be a help to you. Let us know if you need any assistance navigating your way around and getting connected here.
The Mods
0 -
wordgiirl,
The only side effect I noticed when I transitioned to just HP was the persistence of mouth sores. I had those until several weeks after my very last infusion. Otherwise I felt great. Crazy as it is, I actually started to look forward to some “me time” when I had just the HP infusions as I went to all of those by myself. With a one and two year old at home at that point in time, I felt like I was on vacation at the infusions!0 -
why some of us had herceptin and some of us herceptin and perjeta
0 -
Margun, it depends on the prognosis without perjeta.
0 -
For me - it was the year. Perjeta was fairly new and not usually given unless Stage 4. But my MO pushed for it.
0 -
Margun - my MO said that if my tumor had been closer to 2 cm or had been in the lymph nodes, then he would've added perjeta to my treatment.
0 -
Perjeta was initially introduced for early stagers with specific parameters - tumors 2cm or over, or a smaller tumor with positive nodes, it had to be given neoadjuvently with a taxane and Herceptin, preferably Taxotere. It was only approved for the six neoadjuvent infusions in the fall of 2013, but later adjuvent Perjeta was also approved so those who are high risk could continue to have H&P after surgery.
0 -
thank you ladies for your response.
0 -
I'm an 8.5 year triple positive (Estrogen, Progesterone, HER2+) survivor. I had IDC and chemo was a given. Treatment was TCH (taxotere/Carboplatin/Herceptin).
T & C for 3 months and H for 1 year.
I live with some discomfort, but it's nothing I can't handle and I am truly thankful to be alive.
CONGRATULATIONS TO ALL THE SURVIVORS HERE AND EVERYWHERE!!!
0 -
Cateriina- congrats and thank you for pos
0 -
Congratulations to you too Caterina061.
Thank-you for posting.
0 -
Today it's 6 years since I found my cancer, and for the first time I completely forgot about commemorating this day until somebody else reminded me.
Someday I hope you all will be able to forget too!0 -
Thank you and congratulations Molly1976 and Caterina0611
0 -
Congratulations ladies
0 -
Five years out from surgery today. I do remember this date every year, and making it to 5 years means a lot. Very thankful for the care I received and to this support community.
0 -
I'm a 5 1/2 year survivor doing pretty well and still cancer-free. Treated before perjeta and neoadvujant therapy became standard, with such an aggressive tumor, the first pathologist had to send it to the university lab for identification. Am used to being single-breasted (often go braless, valuing my own comfort over shocking anybody with my asymmetry), and my lymphedema is under great control (I wear a sleeve and gauntlet or glove, and now only need night wraps about once a month). Still read these forums regularly because of all the invaluable help I received during chemo, and because hearing other's survivor stories helps quiet my worries about recurrance, which still pop up every so often, but luckily no longer dominate my waking hours.
Wishing everybody here a great year!!!
0 -
Congratulations on the 5 years Pipandor!
You are one of the ladies that I've followed because we had a similar diagnosis.
And congratulations tessu on your 5 1/2 years!
0 -
Started treatment in July of 2014. Coming up on 7 yrs. Ladies you can do this. Love, Jean
0 -
So glad to have found this HER2+ survivor site. Just diagnosed Sept 2020, and what was supposed to be "garden variety" by the Radiologist sure does not feel like it! Early stage small tumor, triple positive, grade 3 and just had two infusions of Kadcyla. Radiation to come after this, plus Letrazole. I feel like I had a life before this and now it is hard to see the years down the road now. These survivor stories are so welcomed. I had retirement planned and this was not supposed to be it. Bless all of you for posting that there is a chance to survive longer with this dang HER2+ breast cancer.
0 -
Dear Racheldog,
Welcome to the BCO community. We are sorry for your breast cancer diagnosis. We are glad that you reached out to join us. We know that you will find support and helpful information here from our members who readily share their own experiences. Please let us know if you need any help finding your way around to the information that you need. We are here to assist.
The Mods
0 -
I am taking letrozole for more that years and I have manageable on and off bone joint pain . But a few months now I have some on off discomfort around left pelvic area. I do not know even it is frommuscle or bone. Any of you experienced that?
0
