TRIPLE POSITIVE GROUP

Wonderful, Vicky...that is so great

Kattis...so glad you're feeling good. I SO know what you mean about planning for future. It's like there is this brick wall slammed in front of you on the day of your diagnosis. Good for you - enjoy some fun; you deserve it...

Kattis ... Cancer free sounds WONDERFUL

Posey, I've felt my heart go "wonky" here and there too. My last echo (a few weeks ago, after 3 herceptins) came back good, so I'm choosing not to worry about it at this time. I would guess the herceptin does have something to do with it, but since my echo looks good, I'm good. Hope that helps.

Thanks, girls...I will mention it to them. It won't do its thing when I'm in for the scan I'm sure, but I'll ask...I've had 12 Herceptin treatments now.

Have a great day - it's very rainy here and I feel like hunkering down

so happy for you Suburbs!!!

Coach Vicky

hi. i am a 35 year old that got diagnosed back in august. i am triple positive which scares me very much as the doctors skirt the topic of reoccurance. they wont give me a straight answer on the 'chances' i have of say 5 years cancer free or 10 even. i realize they cant say for sure but surely there is statistics out there or? what do you get for answers when you ask? i 'sailed' through chemo as my oncologist claims🙄 altho she has no idea the gut issues i deal with still, almost 2 months after being done😏 i cant eat any raw veggies with out getting diarrhea.. is this how some of you found it? i am now into radiation, only 10 treatments of the 29. so far my skin is okay. after radiation i have to take tamoxifen. have any of you been on that? how did you find it? one lady i talked with said it was worse than chemo... i'm not sure i can live with that for 10 yeard😳 many questions for you that have been through it🙃

Jeaniraye,

There are not yet statistics available for 5 or ten years down the road because the drugs being using now, like Perjeta, are new, so statistics for 10 years post treatment are not yet available. If you go by older studies there may be data on recurrence or survival rates, but this information is not relevant to those undergoing the latest treatment protocols.

Good evening everyone. I am 32 yrs. old and have recently been diagnosed with bc. I go back and forth with being strong and actually getting teary eyed. I try to focus on work, but I feel like Im not giving 100%. My doctor suggested that I talk to other bc survivors and those who are going through it now as well. At first I was against it, because frankly this is not a club I chose to join. BC doesnt run in my family so to be thrown into this makes no sense to me. I was told that Im am still in shock. When did the realizationactually hit you? My mind is everywhere and I feel so overwhelmed with knowledge and emotions. I was told that I will be doing chemo, surgery and then radiation. Was this the same order for you? Do you have any recommendations on decreasing side effects? Especially hair loss and nausea.

Thank you in advance for your respknses.

beautifully- I am doing a clinical trial and will be on Herceptin and Perjeta for one year. I've had 12 treatments so far, 6 left. No chemo. Great results so far, no real side effects from HP but I do have SE's from Arimidix. I'm having surgery this week. Clinical trial link below. I wonder if this is what your oncologist is referring to?

https://clinicaltrials.gov/ct2/show/NCT02689921?term=NEOADAPT&rank=1

New and strong, sorry you have to be here but you're in the right place. You will find lots of information and support in this group. I had the same emotions as you when I was first diagnosed. I have no cancer in my family either so was quite surprised. I was told chemo/surgery/radiation was my only treatment option but was not keen on doing chemo, that scared me the most. I cried a lot in the beginning and finally decided to accept and fight with everything I have! I decided to get a second opinion. Luckily I was given the opportunity to participate in a clinical trial using targeted therapy Herceptin and Perjeta only, no chemo. I was all in and am happy to report my tumors are no longer visible on MRI. I am a little over half done with treatment and am having surgery this week. I did not have any side effects from the HP and continued working full time. I do have side effects from the daily pill Arimidix: dry skin, muscle and joint pain, thinning hair, runny nose and fatigue. All very manageable with little impact to my quality of life. Most people don't realize I am going through cancer treatment! I feel very blessed with my amazing on

My advice to you is get a second opinion and find out all your options for your particular situation. Treatment depends on type, stage, size and grade. Information is your best friend although it can be daunting. You should feel confident with your care team, they will become your second family. There are many, many success stories of women who have beat cancer. You will be one too. Your emotions will be a roller coaster but stay positive and you'll get through this like all the women before you. Remember your experience will be as unique as you are but you will find a common sisterhood with other BC survivors that will give you strength.

Wishing you the best, take care

New & Strong,

I am sorry this is happened to you. This is not a club anyone wants to join but you will find great support here, references, and help to get you through this journey successfully.

A BC Survivor told me early on that she would not wish cancer on anyone and she would not take her journey back for anything. I must've looked at her very strangely. She said it would be a while before I understood her words. I understand now.

She encouraged me to write in a journal and I have. I have written every emotion, every feeling, every behavior I have encountered. Because I have written these things, I can go back and see my progress. I would encourage you to journal as well.

I also blog about my cancer journey at www.leaderlines.net. I started blogging 23 August 2016. My blogs are blunt, truthful, raw. I was diagnosed 7 June 2016. It took me a while to go public because I was ashamed.

Yes, you probably are in shock and may be in shock for a while. There are still mornings I wake up and think, "crap I had cancer." I don't know when reality actually sets in.

To address your questions, I take a dissolvable, mint flavored Zofran for nausea. My primary care provider said he had never written a prescription for refillable Zofran. I commented, what's your point? I need this so that I don't puke. My point is ensure you get what you need to make this journey successful. Demand if you must.

For example, I tend to swell to the degree that I am unable to take my wedding bands off. I now have a diuretic and potassium pill to help with this. I told my oncologist what was going on with the swelling and said I needed his help. I got help.

You also asked about hair loss. I would encourage you to bing the Rapunzel project and learn about gelcap therapy. My husband used gelcap therapy on me and I did not lose my hair. My hair is buzzed and short but I kept it through chemo. Because of my results with gelcap therapy, the center where I take treatment now offers it to other people. There is a community for gelcap users on this site.

Some people are very comfortable going bald. I admire their coverage. I don't have that depth of courage. BTW, you lose all your hair... Leg hair, under arm hair, and pubic hair. It is so cool not to have to shave!

I have a few other things to share as well. I hope you find these thoughts helpful.

If you are not in shape, get in shape. Another BC Survivor wrote me the day after my first chemo. She said I hope you are up and moving. Additionally, she said if you will work with your chemo you won't be sick. I was a little ticked off when I read her email but I got my butt out of bed and I walked. I walk six days a week. I'm in better shape now than I was before diagnosis.

I have suffered with rosacea for years. Chemotherapy cleared my face up. My face is in better shape than it has been in years.

Chemotherapy has also improved my eyes. I've gone from a 2.50 corrective lens to 1.75. My oncologist team tells me this is pretty common.

I loved my boobs. I cried and cried over the decision to have a double mastectomy. I cried sobbing tears everyday from 7 June to 12 July when I had my double mastectomy. Some days I still cry but it is controllable now.

My plastic surgeon said to me when he first met me "aesthetically, I find your breasts too large for your frame." That was a WTF moment. Another BC Survivor shared with me she had one regret. She wished she had made nice pictures of her breasts. Not medical pictures but pretty pictures. I contacted the photographer that makes pictures for our business and she agreed to photograph me. I've only looked at those pictures twice and I will share with you that my boobs were too large, uneven, saggy. My PS was right.

Today, I love my new boobs. They are soft, round, perky. I am a 32DDD and the perfect size for my frame at 5 feet tall, 122 pounds. I share this with you so that you know good and happy things can come from this journey. I got a new rack that my insurance paid for. Other women who want a boob job pay thousands of dollars for this. My point is to focus on the positive during the journey. I believe staying positive is the best Rx for success.

I attribute a lot of my feeling about my new body to my husband, my surgeon, and my plastic surgeon. They were all focused on getting me to feel whole again. When you put your medical team together, ensure that these are people that are not only competent but also caring. If they are not, fire them. Remember your medical team works for you.

The BC Survivor that recommended I make pictures also shared with me when I ask her about the relationship with her husband something that I know now is very true. She said your husband doesn't care about your breasts, he just wants you alive.

One day when Richard (my husband) was draining my tubes, I ask him how do you do this? He said I just put my head down and move forward. Then he told me, "I didn't know I left you this much."

Unfortunately, there will be people (family and friends) that fall out of your life. I don't know why this happens. Maybe they don't know what to say. Just be prepared that some of your relationships may be different. Focus on the people that support and love you.

I hope what I have shared is helpful. You may ask me any question and I promise to answer you honestly.

Finally, I am a much happier woman today than I was on 6 June 2016. I am also a nicer person. I have learned a lot. I wished there had been another way to learn these lessons and not via cancer. LOL! I tried to make the best of the hand I was dealt. I pray for you the same.

Coach Vicky

What a great post, PoseyGirl!

I am drawn to your line: "I do feel like I have a permanent traveling companion, like this creature in the room that I have to keep my eye on. And I'm scared to turn my head away from it."

As a young child I had a pretend friend I named "Mickey." My parents would hold the car door open for her to get into the car. She went everywhere with me for about a year. When I read your line, I remembered Mickey. I always kept an eye on her. Just like you wrote about cancer being a traveling companion you must keep an eye on.

Cancer is not pretend but I will hold close the traveling companion. Your analogy makes sense.

Thank you.

Coach Vicky

new and strong,

I hope by now you see you have lots of friends in your pocket going on this journey with you. I had no family history either. Turned 40, had my first mammo, and poof cancer.

Try to bite your treatment off in chunks. What do you have to do today...dont think about a year from now. It's too overwhelming.

On a separate note...i decided to take an antidepressant, and was prescribed effexor. I took the first pill last night, and boy was I SICK. I am not taking another one of those pills ever. It was like having an out of body experience with shakes and dry mouth...Makes tamoxifen feel like a cake walk.

But now what to do? I really think I need an antidepressant, but can't take any of them. Switch to an AI? I was sort of hoping to "save" the AIs for later down the road. I'm just feeling mopey today. I feel down because of the side effects of tamoxifen and my 40lb weight gain. (For those of you new to the board don't panic. I was allergic to my chemo and was on tons of steroids And I blew up like a balloon. Not typical).

I can only take effexor, which I did not like. The effexor interacts with my migraine medication, which I take because Lupron injections give me migraines. And at the medical weight loss center today (trying to lose weight medically supervised) am told I can't take any of the 4 weight loss drugs on the market. It's a vicious cycle. Curse you cancer! Sorry for being down today...

Beautifullybroken4284 - My onc just mentioned the same thing. She wants to keep me on Herceptin and Perjeta for a full year and I'm not thrilled about it either.

Just curious...were any you given a choice between AC-TH v. TCHP? My onc recommended AC-TH and so did the onc from Dana Farber during my second opinion. They both said they would be comfortable with either one and 51 docs would recommend one while 49 docs would recommend the other. I ended up going with TCHP because of the heart-related and acute leukemia risks associated with AC-TH. I still haven't met anyone who was given a choice, so I figured I'd ask.

bareclaws - I just had to Google ITP and now that I know what it is, it's funny because if I blow my nose too hard, I get a nose bleed and it takes forever to stop. How were you diagnosed...a blood test?