Triple Positive

Hadit · 11-10-2016, 06:27 PM

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 .

Juls · 11-11-2016, 03:40 AM

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

caya · 11-11-2016, 06:24 AM

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

Hadit · 11-11-2016, 08:16 AM

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.

tricia keegan · 11-11-2016, 01:29 PM

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.

Hadit · 11-11-2016, 02:52 PM

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.

tricia keegan · 11-12-2016, 01:21 PM

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.

Hadit · 11-13-2016, 07:27 AM

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.

Carol Ann · 11-14-2016, 09:04 AM

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

Hadit · 11-14-2016, 11:28 AM

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.

Carol Ann · 11-14-2016, 01:34 PM

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

Hadit · 11-14-2016, 02:23 PM

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.

Carol Ann · 11-14-2016, 03:19 PM

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

Hadit · 11-14-2016, 07:27 PM

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!

jra40 · 11-15-2016, 11:34 AM

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

Jessica

Hadit · 11-15-2016, 02:49 PM

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!!!!!!!!!!!!

Paula O · 11-17-2016, 03:43 AM

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!

Hadit · 11-17-2016, 09:48 AM

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?

suzan w · 11-17-2016, 11:11 AM

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!!! :-)

Hadit · 11-17-2016, 03:51 PM

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!!