Triple Positive
 

Hi there, I'm new here and would really like to find other triple positive bc patients. I just finished Herceptin and would like to know of others who finished treatment and their stories. I was dx last year (2015) so would like to know how others are doing. thanks. This really means a lot to me as I have so many questions and feel like a ticking time bomb of this coming back .

Re: Triple Positive
 

When I was diagnosed triple + The Oncologist and Nurse told me I was lucky! I was treatable but not curable! Plenty of treatments available for triple+
Didn't feel that lucky!!
Nearly 4 years later doing well.
You have found a great site here- ask all your questions & I am sure you will get helpful info and advice.

Julie

Re: Triple Positive
 

I am triple+ and am now 10 years out!

I did 2.5 years of Tamoxifen, the 2.5 years of Femara, along with chemo and Herceptin. I was pre-menopausal at diagnosis, but then blood work confirmed I had gone into menopause so I did the Femara.

Some studies have now shown that 10 years of anti-hormonals may be beneficial, but for me, my oncologist felt that the risks of taking 5 more years of Femara outweighed the possible benefits, due to other medical conditions.

There are so many treatment options available for triple+s now, confer with your doctors for the best regime for you.

Good luck, I look forward to seeing you join the 10 year out club (and beyond)!

all the best
caya

Re: Triple Positive
 

Caya, thanks for responding. 10 years out! Congrats! I"m 55 and was premenopausal when dx at 54. I did chemo 1st then lumpectomy then radiation then completed Herceptin last month. On Arimidex for 5 years or more.

Re: Triple Positive
 

Hi, I was dx in 2005 and was one of the first to receive Herceptin here in Ireland which had just been approved for early stage bc. I sometimes wonder where the last eleven years have gone to and remember being just as scared as you are now. I think we always need to remain diligent but you do get more confidence the longer out you are, good luck.

Re: Triple Positive
 

thanks for your success story. This is exactly what I needed to hear. I'm still new to this whole bc "club" and so far the initiation has been dreadful. I need to know there's hope. It worries me because my onc dr wants me to keep my port in for 2 more years and that gives me great concern.

Re: Triple Positive
 

Hadit, some Onc's like their patients to hold on to their port while others don't, don't read more into this as it's just a personal preference for that Onc. I think all the people I've met here that were her2+ and early stage and had herceptin are all still doing well. We had a post a while back about it where so many of us posted that we were still NED, thats got to be encouraging so just take each day at a time, thats what I've been doing for eleven years and will continue to do. There have been some scares of course, but don't allow the cancer or fear of it to overwhelm you, otherwise it's won, and this is one battle you are going to win so hang in there and remain positive.

Re: Triple Positive
 

thanks, I"m just trying to learn as much as I can about my dx. The more I learn the more I can put my mind at ease. I'm gonna beat this by staying calm and being more aware so I"m not blindsided. That's what really gets to me. Being blindsided.

Re: Triple Positive
 

Hadit,

I couldn't agree with you more about the being blindsided ... see my signature. I went through months of it, one thing after one another. I was told I was fine. Then I wasn't. I didn't have cancer. Then I did. Then the other breast was fine. Ooops, no it isn't fine. I didn't need chemo. Then oh, wait, you do need chemo. And Herceptin.

Maddening. It was a roller coaster I never want to be on ever again.

Can it come back? Yes. I take my Arimidex every day and hope for the best. That's all I can do. There are no guarantees in life, least of all with cancer.

Wishing you the best, and so glad for all the triple positive ladies out there who have survived many years and post to remind us about it!

Carol Ann

Re: Triple Positive
 

thanks, my Her2 came back equivacle and was told I would need lumpectomy and radiation. Then my Her2 came back positive and it was chemo 1st.

Re: Triple Positive
 

Hadit, the tumor in my right breast was HER2 equivocal ... and like you I was told I didn't need chemo, etc. In the end it didn't matter because then the triple positive HER2+++ was found in my left breast. I like to think the Herceptin actually worked to prevent BOTH tumors' stray cells from setting up shop and coming back someday. Equivocal still isn't the same as negative. It just means, in the end, there aren't enough HER2 receptors to qualify for Herceptin. So maybe this is better protection for you in the long run.

Not that chemo doesn't totally suck. It sure as heck does!

I had a double mastectomy and all my nodes were clear, so I didn't have to have radiation. I am hedging my bets with that, too. Once you have radiation ... you can't have it again. I figured this way, if I ever have a local recurrence (totally different than metastasis to distant organs, the risk for this is approximately the same whether you choose lumpectomy or mastectomy, there are stats that say lumpectomy is actually a bit better) I could still have the radiation if I needed it.

Each of us has to decide what is best for us. I chose not to have any reconstruction, either. I totally and completely support every woman in this horrific situation to choose what she feels is best for her. Period.

Carol Ann

Re: Triple Positive
 

I just learned that once an area is radiated it can't be done again. I sure hope so. I'm just looking for many others who are triple postive who are ahead of me and hear their stories. I'm still wrestling with whether to keep my port in for 2 more years or not. My onc appt is in 2 weeks and I leanred from 3 other bc patient of my onc dr that he told ea of them to keep their ports in for different lengths of time.

Re: Triple Positive
 

I would ask him why he gave different time frames/length of time for leaving it in to different patients.

Now I am curious, too. :)

I had mine removed right after Herceptin and after my shingles breakout. I couldn't believe how much more comfortable I felt, even though I had gotten used to it and it never really bothered me. I had some concerns about taking it out due to my lymphedema, but my onc still said it needed to go, as keeping it in requires occasional flushes to keep it clean so it doesn't get infected.

I know you will do all your research and make the decision that is best for you! :) Keep us posted!

Carol Ann

Re: Triple Positive
 

I think my onc dr gave ea of us different times to keep our ports in due to our dx. This worries me as he suggested that a triple neg lady keep hers in for 2 yrs too. Scary to lump us into the same category. I appreciate you sharing that your dr said it could cause infection as my rad onc dr said same thing and thought 2 years was excessive. I'm so confused as what to do. I have another mammo in March , I may wait until then and see results to decide. thanks for your support!

Re: Triple Positive
 

I am Triple Positive, 6 years thriving! See my stats under my signature line, welcome warrior woman! Fight on....

Jessica

Re: Triple Positive
 

jra40, boy do I have questions for you. I hope you don't mind. Your situation is VERY similiar to mine. I was dx (2015) at age 54 (premenapausal). I could only complete 5 out of 6 rounds of chemo. Then lumpectomy. Clear margins, no node involvement. Chemo reduced tumor to 4mm at time of lumpectomy. Started radiation but couldn't complete as I ended up in ICU on morphine for 3 days. Recovered then developed telengiactasia (bloody spider veins, Severe)for which I'm getting weeking injections of about 30 shots ea time under right breast. Completed Herceptin last month ( Oct 2016) and started Arimidex in June 2016. Do you experience any muscle and joint pain from Arimidex? Mine has become so severe that I started taking Glucosimine but stopped as it increases insulin levels. I'm finding that there is no long term pain solution to dealing with side effects of Arimidex. My dx was 2.1 cm tumor that also responded well to chemo, so much so , that after 1 st round it shrunk and didn't shrink further after 4 more treatments. Onc dr said I was considered "complete". Do let me know what /if you have pain and what you're doing about it. thanks!!!!!!!!!!!!

Re: Triple Positive
 

I was was diagnosed as stage 3a Triple Positive December 2010. I had the "works": first I tried alternative therapy which didn't work, a mastectomy of the left breast. Carboplatin, Taxotare (also 5 rounds instead of 6 due to neuropathy), and Herceptin a yr, 30 rounds of radiation, 5 years of Tamoxen then switched to Femara for a few months then mammogram/biopsy showed Stage 1 Triple Positive Breast Cancer in the right breast: a second primary, not considered a reoccurence although to me this is not a fluke totally unrelated. I had a mastectomy in September (a lumpectomy was also offered as an option but I felt that I would be braced for another reoccurence in that breast since I seem to be an unwilling host for growing these things). How I wish I could figure out how to change whatever needs to be changed so this doesn't start in again elsewhere now I'm plum out of breasts! I just had 2 out of 12 weekly doses of Taxol and every three week Herceptin for a year is ahead. I would have volunteered for a Stage 1 research trial of Kadcyla but it would have had to have been 10 years since last diagnosis to qualify.

I wish you the best! :)

Re: Triple Positive
 

Wow Paula, sorry to hear of your bc coming back, tho not recurrence. This is my fear. How old are you now? I'm 55 and that's way too young to throw in the towel. The more I hear of others who are triple positive let's me be better prepared. What is the Kadcyla trials?

Re: Triple Positive
 

Hi! I was aalso dx'd triple positive in 2005. At the time, Her2 was a very dire diagnosis. My first oncologist told me that there was very little I could do. Have a lumpectomy, get radiation, take arimidex. I was very upset and went for a 2nd opinion. That doctor recommended an entirely different scenario, which you can see by looking at my signature. At the time Herceptin had not been approved for early stage bc. My oncologist prescribed it "off-label" because she felt that great things were about to happen with Herceptin and early stage bc. At the time getting chemo was a requirement to be able to get Herceptin. Halfway through my year of Herceptin, the FDA approved its use in early stage breast cancers. That was more than 11 years ago and I am happy to report that I am doing well. I encourage you to stick close to this site if you ever have any questions or concerns, chances are, someone has already asked!! You can search the site by topic and find a wealth of information. I will speak for myself, I think the women and men on this site have done their research, advocated for their health and are very very informed. We live this "dis-ease" every day, very well!!! :-)

Re: Triple Positive
 

Suzan, you are a warrior! I needed to hear this so badly! I can't believe it was only 11 years ago that you were told your chances for survival were slim. A lot has happened in this short period of time. I am so grateful for those who have come before me with clinical trials. Now I want to know even more about the progress being made on triple positive bc. I see where there is going to be more focus on triple negative and can completely understand why. I will do as you suggest in researching topics, thanks for the tip. Plz stay in touch!!

Re: Triple Positive
 

Hadit wrote:
Wow Paula, sorry to hear of your bc coming back, tho not recurrence. This is my fear. How old are you now? I'm 55 and that's way too young to throw in the towel. The more I hear of others who are triple positive let's me be better prepared. What is the Kadcyla trials?

Hi Hadit, fellow cancer fightin' warrior woman!

I am 58 now. No towel-throwin'-innin' for any of us gals here!

Here's a link explaining Kadcyla:
http://www.kadcyla.com/about/her2-targeted-treatment

The beauty of the research study I heard about through my oncologist was, if I had qualified, it would have allowed me access to the drug at stage one this time (last time was 3a for me in 2010) without having metastisis which is the typical usage/approval of the drug. The side effects listed on all these oncology drugs including Kadcyla sure are daunting when you take a look though, huh?! The reality of the risks brings out the "YIKES" factor in all this as we determine if the benefits outweigh the risks.

Suzan W: YOU GO GIRL!!!!!! Thanks to you and the other ladies for sharing your stories. too!

Paula
My blog: http://jpoliver.com/wordpress/archives/1617

Re: Triple Positive
 

I was diagnosed triple positive in Feb 2015 after a biopsy. Stage 2. At first they thought that the lump I found in my right breast just before the new year was an abcess. I somehow lucked out and got a teriffic oncologist who put me on the TCHP regimen for 6 rounds of chemotherapy. Did chemo every week for 18 weeks. Managed to not even miss a day of work as I brought my computer with me while I received my infusion. I received great support from my husband and my co-workers. Got a port, best decision ever. Managed to get through all the rounds of chemo. Did develop nuropathy which is very slowly going away. Herceptin is the miracle drug. It started to reduce the tumor in the first three weeks. Had a fantastic surgeon who did a lumpectomy. Clean margins and clean lymph nodes. Then after a couple of months recuperating, I did six weeks of radiation. Just in my first year as a survivor. Feel like myself again. My hair has grown back although now curly. It was rough at times, but I managed to get through everything. Just trying to stay healthy and keep positive thoughts. I do sometimes have anxiety. Busy working on a new project so that's great.

Re: Triple Positive
 

Konagirl, thanks for sharing your story. Yours is so similiar to mine. I was dx stage IIA, grade 3 and Her2++ in Sept 2015. Like you, I did chemo 1st (neoadjuvant). Tho I did 5 out of 6 rounds every 3 weeks. I wonder why yours was different with weekly chemo. Not heard of this treatment regiment for triple positive. I did lumpectomy and got clear margins and clean nodes too. I'm still waiting on more hair to grow but it's now just long enough that I no longer wear a ball cap in public. I was way too sick to do anything during chemo. I don't know how you did it. Do you still have your port in? If not, when did you have it removed? I ask, as my onc wants me to keep it in for 2 more years and I"m wrestling with this. Also, how old are you? I'm 55, thanks

Re: Triple Positive
 

Dear Hadit, each round was three weeks. I called the first week of each round "chemo heavy" that was all four drugs TCHP, the day after this I received Neulasta. The next two weeks was "chemo light", I just received TC each week. Prior to all chemo, they gave me steroids. My doctor said that many patients can't get through all 6 rounds. Happy that I was able to get through it. I certainly had my days of feeling crappy. Being able to work was a great distraction from my illness. I had my head shaved right after I started, the chemo was going to cause it to fall out so this was cleaner and more empowering. One of my girlfriends went wig shopping with me. Great wig, looked just like my hair and a lot of people didn't know until I told them. I still have my port, my oncologist wants me to keep it in for now. I have to get a port flush every eight weeks. I was diagnosed at 59, right before my 60th birthday. My husband and one of my girlfriends threw me a surprise birthday party. I started my chemo three weeks after that. I finished the year of Herceptin on March 30th of this year. My oncologist was all about the latest therapy regimen. I'm now 61. Just recently had follow ups with my oncologist, surgeon and radiologist, all looking good so far. My surgeon is a colleague of the Doctor at UCLA who developed Herceptin, I told him to please pass on my sincere thanks for giving me and so many women a chance to beat this. Hang in there.

Re: Triple Positive
 

Wow! I wish I could be a fly on the wall at that research center to learn more. Why do you still have your port in? What reason did your onc dr give? Mine said " it's one less surgery if you need it". That's what worries me. I've not met any triple positive bc patients who's cancer has come back within 2 years ( the time my dr wants me to keep my port in). Can you plz help. I meet with him in 2 weeks and am thinking I may just have to put my foot down and get the thing out....... or not.

Re: Triple Positive
 

He didn't give a reason. My surgeon is ready to do it when my onc gives the okay. My surgeon is amazing, can barely see the scars from my surgery last year.

Re: Triple Positive
 

Konagirl , thank you so much for responding. Your situation is so similiar to mine and this is what I've been looking for. I hate to bother , but will you be seeing your onc soon? I was just wondering what his reason is for asking you to keep your port in longer. I've known other +++ and most were told it was ok to take their port out and I've met no one who's cancer came back within 2 years. You seem to have a cutting edge dr and team, more so than our lil town dr's. I look to you for guidence. thanks

Re: Triple Positive
 

My next appointment is mid January. I'm thinking that my Oncologist is being cautious because of how aggressive this form of cancer can be. My surgeon was more optimistic.

Re: Triple Positive
 

This is the same reaction I got from my surgeon and rad onc dr's . They both seem to think the 2 years is excessive. I"m torn . thanks