ER-, PR-, Her2+ Roll call
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I've read lots of stories of people having to stop Herceptin and are doing quite fine. Ejection fraction can come back up - although I've also read some that haven't. Talk with your docs, get a plan in place, and don't be afraid to ask for retests for heart function. I know that CoQ10 supplement can help with heart stuff, maybe see if you can take that? Hugs. I'll be starting Herceptin again after AC and while I love what it's done for me, I too am worried about my heart.
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Annika, How fast are they doing the infusion? They started out doing mine @ 30minutes. I was having reactions so they slowed it down and ran it over an hour. That seemed to help quite a bit. Initially I had mine every week for the 1st 18 weeks, then went to every 3 wks. My Muga dropped a little. I was told anything over 50 was good.
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Annika - I had to stop the Herceptin for the Adriamycin, but went back a month later. My Echo is about like yours. Supposedly any damage from Adriamycin is not reversible but the drop from Herceptin will come back up. As for the speed of infusion - I made them do my Herceptin over 90 minutes and also give me an extra liter of fluid (saline/glucose) every time to help flush it through. They were not really happy about it & maybe I'm the only one in the history of the world, but it has meant no SEs for me. I had "H" every 3 weeks and just had my last one Wednesday. You can be sure I rang that damn bell.
I did stop the Perjeta after the first 6 rounds. One of the listed SEs for that was neuropathy and I sure didn't want any more of that.
Let us know what you end up doing.
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thanks ladies !! The last infusion they slowed it way down , one week dose took an hour and a half !!! Before its been 45 minutes for 3 weeks. I think my body just finally had enough. I started chemo June 2013 and other then a month off for surgery and a month for a over dose of herceptin I been doing infusions for well over a year oh yeah even thou I'm hormone neg I been on tamoxifen for 7 month.
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ANnika, why tamoxifen if ER/PR negative?
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the primary tumor in my breast that was removed with the first lumpectomy was very tiny and my secondary lymph node tumors were gone by the time my second surgery and node removal. The biopsy path showed neg but because of the size there was a small possibility it was not correct and all three of my docs thought I should try it !!! I have no se so for now I'm staying on it !!!
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Perjeta Boosts Overall Survival in HER2-Positive Metastatic Breast Cancer September 30, 2014
Final results from the CLEOPATRA study showed that women diagnosed with HER2-positive metastatic breast cancer who got Perjeta, Herceptin, and Taxotere lived about 1.5 years longer than women who got only Herceptin and Taxotere. Read more...
The Mods
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Hey all! I haven't been really active here on the BCO discussion boards in the last couple of years, but I did want to post here. I was dx in November, 2010 and went through the full round of AC/TH with radiation and Herceptin for a year. I have been and remain cancer free since the end of my treatment. I occasionally worry about the possibility of metastasis or recurrence, but remain hopeful that my MO's reassurances that this is statistically not likely will remain true for me. (P.S.~I know my dx info says er+/pr=, but the + was only 1%, and my MO says that was very possibly an anomaly, so I never took any Tamoxifen.)
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Julie: Thanks for posting. I just finished my final Herceptin last week and am hopeful I will stay NED for awhile. Your story provides hope for all of us.
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Thanks to the ladies that are checking in.
My Herceptin was stopped a month early due to SE's. I also skipped a dose during treatment due to EF. My MO didn't seem concerned about stopping early.
Best wishes to all!
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Hi everyone! I am brand new here. Can't say I'm happy to be part of the club, but I'm certain I'm surrounded by super women of spirt
I just had my post-op visit today, and although clear margins and NO lymph node involvement (YAY) they found that my tumor was bigger than originally suspected, therefore next on the agenda is.....the dreaded chemo (BOO) 
I will be meeting with my med onc next friday. So what is the first line treatment for HER2? What can I expect? I already know everyone's different and there's huge variation among cases, just looking for a general answer. Maybe from someone with the same profile as me??? Thank you 💝0 -
Raspy - I'm also ER/PR negative - which as you know changes our treatment some. I started with Taxotere, Carboplatin, Herceptin & Perjeta - 6 rounds every 3 weeks. I'm not sure you can get Perjeta yet unless you have the chemo infusions before surgery, but you should try since the recent studies are very positive. After surgery I had Adriamycin & Cytoxan - 4 rounds every 3 weeks. Then Herceptin for the rest of a year. I'm still reading & posting on the Taxotere, Carbo, Hercept thread. Also I found it really helpful to join a chemo thread for ladies undergoing tx at the same time. I'd guess the current thread would be Fall 2014 (?) but you may want to read back on Summer 2014. There is also an excellent thread - TIPS for chemo - that discusses all sorts of general things related to chemo. Sorry that I can't post the links, but the bco system will loose this post if I try to do that. If you don't find them on active threads, let me know. Since you had a lumpectomy am I right in supposing you will do rads too after chemo?
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hi raspy queen: see my info; I've been through lots of "stuff". Seeing that you are HER2+ you will be getting herceptin along with a taxane (either taxol or taxotere). Most regimens seem to be either TCH x6 (taxotere, carboplatin and Herceptin) or ACx4 (adriamycin , cytoxan) followed by THx12(taxol with Herceptin) and then continuation of Herceptin only for 1 year. It's great that you have no nodal involvement !!!! But HER2is considered aggressive and that's why chemo is necessary. Glad you found this site, it will be a wealth if info and support for you.
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Welcome raspyqueen to BCO. We too are sad you are here but glad you found this caring group.
Great news about clear nodes, and margins - great to hear good news. Hope your Oncologist meeting goes well and a treatment is determined that suits you.
You may be interested in reading Systemic Treatments for IDC: Chemotherapy, Hormonal Therapy ... where Perjeta is discussed along with other treatments for IDC.
We wish you the best
The Mods
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Hi Raspyqueen and welcome!!
It sucks to find out you have cancer but, for me, believe it or not, many things have changed for the better. I have learned who my true friends are and started taking turmeric for anti-cancer, and - lo and behold, no more monthly trips to the emergency room for uncontrolled asthma!
I learned to slow down a bit and to enjoy each precious moment.
SO, I am saying- you are starting on a roller coaster ride, with the rest of us by your side, and there will be downs but also ups!
It seems like many BC docs want to immediately throw adriamycin at the cancer. It is pretty tough on people's systems. I have done a ton of research and got several consultations, have now been through all of this with a good friend in addition, and the "good" docs recommend that a combination called "TCH" is really just as efective as the adriamycin-containing regimens, when combined with Herceptin. And much easier for the body to deal with.
Now there is perjeta, we are all quite excited about that one. So please be sure toexplore all your options.
deeeep breaths- you can do this! one step at a time.
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well I think we figured out what's going on with me !!! SE of herceptin , my sinus mucus is super super thick draining down and irritating my lungs !! Guess its pretty common while on herceptin
I got a steroid nasal spray to see if it relieve my symptoms . I see my MO next week and will discuss my last two week doses!! 0 -
Try turmeric capsules! 100% cleared up all my lung and sinus problems. One of the strongest anti-inflammatories known, it works through the Nf-kb pathway.
And nope I dont have stock in the company but seriously, it has been a miracle for me, I would have died a lot sooner from asthma than from this silly cancer if I had not discovered turmeric (to try tp fight the cancer).
My friend cleared up her plaque psoriasis with them- nothing else had ever worked. So simple.
Thank you, Nature's harvest, the company in oregon who makes these capules!
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thank you so much !!! Will order some today
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Hello everyone. It has been awhile since I was on here. I have been having way to much fun living life and ful filling dreams.
I am 3 yrs out from surgery and 2 yrs out from my last Herceptin treatment. Still cancer free as far as I know. lol I will admit my diet and exercise have been horrible since I moved to Maryland in March. Before cancer, I exercised on a regular basis and ate pretty healthy. Alot healther that I do now! Right now I am just enjoying life. Cancer did not run in my family and eating healthy and exercising did not keep it at bay. So for now, I am enjoying food! The funny part is I have only gain about 6 lbs. lol I will get back on the healthy track soon, just not right now. ;p 0 -
raspysqueen check out "Taxol and Herceptin only for stage 1 HER2 positive "
It is the top discussion on the HER2/neu Positive Breast Cancer
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Hello - A newby here. I guess I need to join this group! I am 51 years old and I found out I had BC in early Aug 2014. ER-PR- Medullary. I Had a lumpectomy on 8/20. Consulted with my MO who didn't mention I was Her2 positive. I chose to only do radiation. He reluctantly agreed with my decision and we parted ways. Two weeks later, he tried to call me on my cell phone 3 times. I noticed this on my way home from work. He called me again the next day - I was ready to answer the phone. He had been to a conference in Boston and spoke to a well know Dr about me. This doctor said I needed chemo. So this is why my MO was so anxious to call me. He suggested I go to another city (about 100 miles from me) to consult with another MO and to consider a clinical trial for TBM-1. I agreed to go for the 2nd opinion. I found out from her that I was Her2+++ and did quality for the clinical trial. I started Kadcyla last Thursday, 10/16. So now I will travel to the other city for treatment every 3 weeks. So far the SE's have been minimal. Nauseated and threw up once on Friday. Is anyone else doing this study/clinical trial?
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I was recently dx with DCIS with microinvasion. ER/PR- , HER2+. Since I had MX and because the invasion is <1 mm, no radiation/chemo is warranted. I dont see very many with similar situation.
Sciencegal- I just started back on turmeric powder after receiving the last pathology report. Hopefully,no more surprised pathology reports.
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Hello everyone! Thanks for the warm welcomes and advice. As you can see, I started chemo just yesterday. So far, I'm hanging in there. Actually, I slept during my entire treatment once they gave me the benedryl! LOL
Taking my Zofran and thankfully haven't the need for the prochlorperazine. Getting my Neulasta shot this afternoon and then I guess I'm on my way until my next treatment. So far SE have been minimal: nasty taste, dry mouth, dry skin. I'm trying to stay hydrated even when I'm not thirsty. I ate a Chobani flips this morning - the almond coco loco. It was delectable! I was surprised, expecting everything to taste like crap! I hope things are going well for everyone and if you have any tips for me, I'm open!0 -
Things have moved fast and changed quite a bit. I have a pending appt with MD Anderson for 5 days beginning Monday 11/17. MY other appts are postponed pending the results of time spent with MD Anderson. They have requested my tissue from both procedures... More data, hopefully more informed decisions. Maggie
Any MD Anderson ladies on this board?
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Brief update - A real positive and a 2nd that wasn't so much...
Yesterday - I have a "Care Manager" RN now. She met with us yesterday, Comfortable with her role and tell it like it is attitude. She knows the ropes!
Today - I met with the recommended local oncologist. Not expected. I cancelled the appointment over a week ago after getting MD Anderson confirmed. When I talked with BS at the post operation appointment she felt I needed a local oncologist, if for nothing more than port maintenance. So I was surprised to get a call "reminding me" of the appt yesterday afternoon and thought sure, why not.
His opinion - must do chemo - Taxol (paclitaxel) - along with Herceptin (standard of care treatment). Sees no need for staging scans -PET, etc .
My bit of commentary - He didn't take the time to question my decades struggle with Fibrocystic disease, microcalcifications, lumpectomies, etc. Would that make a difference in whether or not to look more closely? Never even got there. He doesn't know me from Adam's house cat so I mainly listened for most of the session. Got to love the check the box list and pictures he drew for me on the back of a one page "Knowing Breast Cancer" photocopy! (Hilary you would have been proud of me!!!)
He was ready to send me down the hall to have blood drawn and arrange my required chemo education session when I said I needed to think through all of this. ... and pulled the ATEMPT clinical trial info from my folder and briefly reviewed my understanding... oh and mentioned the MD Anderson upcoming visit..... and then my background... Wow... not really sure why he was the "top" choice .. doesn't take a rocket scientist to go with the "standard of care". Then again, I have been told by medical types to go elsewhere.
So... off to MD Anderson first and then a trip to UNC-CH.
Hope your day was 1/2 as much fun!!!!
Maggie
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I just wanted to drop in and say hello. I am a newbie here as I was just dx
in mid November. Trying to wrap my head around this and treatment. My oncologist has started me on neoadjuvant chemo every 3 weeks and will now add Herceptin in weekly dosing. Per my request. I have heart concerns using Herceptin. Any advice about receiving the drug. Oh and my chemo treatment is taxol and carboplatin, now called tch. Probably the most common treatment plan. Thanks
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jks123 - I had neoadjuvent Herceptin every 3 weeks along with the taxotere & carboplatin. Then I had Herceptin infusions alone every 3 weeks for the remainder of a year. Are you saying you requested weekly Herceptin?
I had an Echocardiogram every 3 months all during treatment because yes, Herceptin can cause heart issues. Others had MUGA tests at regular intervals.
I always insisted that my Herceptin infusions be at least 60 minutes & many were 90. From my reading that looked like fewer side effects. I have very few.
Gee - I forgot to say welcome. Sorry you have to join us but we'll be here when you need us.
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Dear Jaimieh
I have 7 mm tumour ER/PR-HER2+, grade 3, node free , mastectomy
May I know whether you agree with your oncologist to have chemotherapy
May I know your prescription chemotherapy drugs and whether you are taking supplement like coriolus versicolor and abstain from red meat, milk and seafood, chicken and deep fried foods
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Your prognosis is same as mine Just done mastectomy on 6 Jan 2015, 7mm tumour DCIS ER/PR-, HER2+, grade 3 node free
May I know your chemotherapy drugs and your age?
How about your diets, do you abstain from redmeat, chicken, deep fried foods and milk?
Have not decide on adjuvant therapy as there is a hot debate on whether it is necessary for small tumour below 1 cm with mastectomy to be overtreated with invasive drugs?
Dr William Wood from Sloans Kettering Cancer Centre says no adjuvant therapy for tumour of 1 cm with mastectomy
Please share your opinion as soon as possible
Appreciate if you can email to me ag62861210@gmail.com
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showing up for roll call this morning! I'm coming up on 3 years since diagnosis.
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