ER-, PR-, Her2+ Roll call
Comments
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StacieRae- I had the same journey as you in 2010-2011. I did chemo, then surgery, then radiation. I had a complete response to the chemo as well. I still did radiation. I had to skip the nodes in my neck as my radiation was to my left side and my heart was in the way. We saved the heart and since I only had evidence of cancer in one axillary lymph node we decided against radiation to my neck. Radiation is easier but be ready for the fatigue. I got through almost 5 weeks of treatment before my skin broke down. It didn't matter however as i was basically done. Aqua four is a must and don't be shy about reporting any SE and skin effects to the radiologist. They gave me a RX for special cream and padding once my skin was very sore.
good luck0 -
Six Month Mammo was good!! No problems. I even made them do an ultrasound cuz I was nervous! But no problems. I am thankful!0 -
Stacyrae,
I ro had a complete response to chemo before surgery ,after surgery had more chemo for insurance purposes than rad plus finishing herceptin..I can agree withe previous comment about fatigue hitting towards the end ..my skin held up well I only was a little pink on collar bone ...I used pure aloe with no alcohol aftwr each tx and Aquphor at night..good luck0 -
Hi All, just dropping in to say hi! Now 11 years on since diagnosis in 2002 xxx hope all is going well for you Her2 girls.0 -
congrats Aussie wow 11 yrs wish you many more yrs.0 -
Yes, Ausiie-Sharon, congrats. And thanks for posting. I am still in treatment but looking forward to being 11 years out. It is good to hear it actually works for some! What an inspiration that is!0 -
Aussie..thanks for sharing. What a wonderful story of inspiration for us all!!0
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Hello Everyone, I have been lurking the boards for many, many, many months. I have learned a lot here. I have also found hope that I may remain NED, and that even if I don't remain NED, there is hope. I am so glad to have found this site. I am grateful that it exists and to all the people that have posted here. This is my first post on BREASTCANCER.ORG.
I am writing in response to StacieRae's inquiry posted October 14 about radiation following a pCR.
StacieRae, it seems that we share many common things related to our diagnosis and treatment. I also had pCR, and I had radiation. Due to the fact that I had neoadjuvant chemotherapy, I do not have any facts as to whether I had any lymph node involvement prior to beginning treatment. I am a little frustrated by this fact as I know that prognosis is partially determined by lymph node involvement.
With that said, after 16 rounds of chemo I had surgery. I had sentinel nodes(3) removed and a mastectomy. The nodes were "clean." The post-surgery pathological report concluded that there was no evidence of cancer found in my breast tissue. YES!!! Both tumors (4.2 cm & 2.5 cm) were completely gone!! NED!! Initially, my RO said I could go either way; get the rads or pass on rads. Within days, he reconsidered my case and strongly recommended rads. He told me that due to my initial presentation with multifocal disease, I should have rads. Therefore, I had the radiation. I recently completed 25 treatments of Proton Radiation.0 -
tchr316, that is such good news, thanks for sharing! All the best for the future.
Viji0 -
well my ladies my last herceptin treatment is this Thursday .... So scare bittersweet .. I can only eat healthy workout and stay positive ... I'm so scare... I still have reconstruction to go but I have no TE on radiated side ... Is reconstruction an option at this point not feel happy any more0 -
HI Patricia, I kno that feeling "scared ", even though im barely done with my chemo. I will have my last chemoe on 10/30,im also scared. I guess we just have to take a deep breath n just think positive right? Talking about eating healthy so hard to do sometime.
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Hi Tchr316..so glad you have joined us and it looks like you are doing great in your treatment journey. Your posting was very encouraging to read..."thank you". Every little bit helps as we all carry through this. The feelings that we all have of being scared are so common and well founded. So easy to say we need to be positive but much harder to do. Hang in there everyone and do what it takes to keep looking forward and finding all of the good things that surround. One step at a time and well get there. Hugs and Love to all
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found out today that my muga went from 70% til 59% in 8 herceptin so Im off it for 3weeks so I can have another one. 5 month ago I played 4 soccer games no problem and ran 6 miles easy. Im scared my heart won't be the same, Im scared I can't continue herceptin my only targeted therapy!!0 -
Annika12, what is the cut off #? Is it 50%? That one thing that i also scared of "my heart".
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yes my %59 is still above normal but my onc said the sudden %11 drop was not ok with him. He thinks it might be an old machine they used the last time. I have no issues at all, did a 5k speed walk on Saturday with no problems. But I kinda need my heart when this nightmare is over....and I only had 8 herceptins out of 520 -
Annika, Do you go to the same place for your MUGA'S? I always went to the same place and towards the end of my tx they changed the way they did them which resulted in a decrease in my number. Mine bounced back after tx ended. I was told 50 was the number they watch. My onc was happy with anything above that.0 -
I do go to the same place but last time it was an old machine... very old and different!!! My onc said it wasn't the number but the sudden quick drop made him worried and questioning the machine as well.0 -
annika -- I had a 9% drop between my A/C and 2nd Herceptin (I'm down to 52%). My MO sent me to a cardiologist. He said that a 10% variance is possible due to differences in machines and technicians (and that the variance is common). The cardiologist emphasized the importance of the same technician doing all my ECHO's (my doc doesn't do MUGA's). Thankfully I'm holding steady... You might want a referral to a cardiologist (he was much more reassuring than my MO). Also see if you can get the rest of your MUGA's by the same technician, etc. I think you will have a more consistent result that way. Good Luck!0 -
Ack! I rarely post but visit often. I think I am in a post treatment anxiety phase. Anyway I have heard on these boards that if you are ER-, HER+, once you reach 3, 4, 5 years out, your risk of recurrence goes down. But, if you use the Predict calculator the 10 year survival rate is lower (somewhat significantly) than the 5 year survival rate so it appears that this is not the case? Any stats gurus out there? I usually find great comfort in the BCIRG results that reflect better survival % than Predict.
Love and light to all!0 -
Hi Sduch.. yes I remember reading that er negative BC recur earlier, around 2-3 years the er positive tumors. That was over 8 years ago. My advice is don't look at the different scales, they are ALL off!0 -
Hi, I've been lurking here for quite a while and decided to go ahead and jump on board; so to speak!
Anyway, I am with you Sduch, its hard not to constantly worry about recurrence. I finished my Chemotherapy on April 28 of this year and all of my subsequent PET and CT Scans have shown that I had a 100% response to treatment. I had a Unilateral Biopsy after that, but I still cannot help but worry that it will come back. I had ER-/PR-/HER2+++ Invavsive Ductal Carcinoma that grew from 2mm at initial diagnosis to 4.7 mm by the time I started treatment. I have no family History and tested negative for BRCA1 and BRCA2, so my cancer was a complete anomaly. That almost makes me more nervous! I look at recurrence #'s all the time.0 -
Hi, I've been lurking here for quite a while and decided to go ahead and jump on board; so to speak!
Anyway, I am with you Sduch, its hard not to constantly worry about recurrence. I finished my Chemotherapy on April 28 of this year and all of my subsequent PET and CT Scans have shown that I had a 100% response to treatment. I had a Unilateral Mastectomy after that, but I still cannot help but worry that it will come back. I had ER-/PR-/HER2+++ Invavsive Ductal Carcinoma that grew from 2mm at initial diagnosis to 4.7 mm by the time I started treatment. I have no family History and tested negative for BRCA1 and BRCA2, so my cancer was a complete anomaly. That almost makes me more nervous! I look at recurrence #'s all the time.0 -
Hello all, since I was diagnosed two months ago, I spent many hours reading in this forum to find comfort, ideas and inspiration. And today I registered. After surgery and commencing chemotherapy last week... It feels like an odd dream. But my motto for this is "embrace the experience" and I hope I will carry through it bravely and wisely. Even though it is not easy all the time. I take things as they come, be they serenity or sadness.
I hope there is room for one more ER-/PR- Her2 ++ in your cosy room! I'm new to it all, but if my input can help as much as all of the members' input has helped me, I'm glad to be here.
Have a nice Sunday!
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Welcome stellina, I am new here too and agree with everything you say. How many chemo treatments are you having? I finished my 2nd TC two weeks ago and have 2 more to go.
All the best to you...0 -
Hello, Viji,
thanks for the kind welcome!
From what I see, we have the same number of chemo treatments - 4. The first one I had one almost two weeks ago, the next appointment is for November 8th and I hope everything will be fine and I will be able to have the second treatment. My formula is epirubicin + cyclophosphamide and then a full year of herceptin.
The side effects are under control for the moment, but I won't cry victory before the end of December... And then, after reading the threads where they talk about herceptin and its side effects, I admit I'm quite scared of 2014!
I'm a little ashamed to admit it, but it is sooo hard to have patience for all of it to be done with! And with everyone just telling you to have patience, you start to have a rather tense relationship with this word!
How are you getting on? I'm glad for you that you are halfway through already! All the best of success in the next steps!
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Stellina, I understand how you feel. I am also so impatient for this whole experience to be over! You will find that only the ladies on these threads really understand what we are going through.
Yes I have read the herceptin side effects and they sound just as bad as chemo and I am worried about that too. But in this game, we have to take one day at a time.
I am coping all right but am still worried about the next two treatments because I have paid for a Europe/America trip 4 weeks after the last treatment. It is a 35 day trip in the middle of winter but I am telling myself that I have to get on the plane. Something to look forward to.
Heading for the chemo bar on Tuesday next week. All the best to you.0 -
Viji, You will be feeling pretty good at the 4 week PFC mark.0 -
ok.....Im a little mad...ok a lot mad!! Went for a follow up muga after after missing 2 herceptins and worrying about my heart. The technician said wait a minute let me get someone to run the numbers of your last muga before the test....something isn't right. So come to find out the doctor didn't read it right...didn't double check, my heart is fine a 68% . They did do the test again after talking to mt onc. And she said a 68%69% this time too. Grrrr like I dont have enough worry and tests!!!0 -
Thank you Sewingnut for your feedback.0 -
hi all..
there is a small query i have.
for er negative pr negative and hr poistive what is the standard protocol these days.
1> dose dense chemo with ac followed by dose dense taxol with herceptin
or
2> tch given in 3 week interval
waiting for your responses..
thanks!0
