TRIPLE POSITIVE GROUP

bareclaws

After the first chemo infusion, I had been infused with platelets several times when regular blood draws showed that they were very low. Platelets wouldn't stay up. Then nosebleeds started, wouldn't stop (9 hours) and I ended up in emergency room. I got two IGIVs and huge doses of prednisone before the platelets would hold. The good news is that after a long, slow taperof the prednisone, and four doses of Herceptin so far, platelets are holding. I get to keep my spleen, which they were prepared to take out.

Kattis894

Just wanted to say to New and Strong and anyone else just starting this journey; You can and will go threw it.

After the first chock, your will be busy with treatment, learning about your situation in your own speed. I found filling out my signature on this page helped me a lot understanding my specific situation. I could first fill out a few things, later a few more and so on. Do not forget that being triple positive can turn out to be somewhat positive since there are lots of treatments to combat this type of cancer compared to some other types. There is a lot of hope for full recovery.

After almost a year I am still in a bit of chock and you do go threw a lot of emotions and scary times. It is all normal. I am now in a state of laziness, feeling tired most the time, but that will also pass and hopefully soon you as myself can start looking forward to a future ahead.

PoseyGirl

Hi All, I know I touched on this a week ago or so, but thought I'd revisit.

What have you been told about heart effects from AC? I finished chemo in late October, but recently have started with frequent irregular heart beats. I noticed it after my 12th Herceptin treatment. HOWEVER, I need to add that I started weaning off an antidepressant (Lexapro) at the same time (3 weeks ago). I am wondering if my doctor suggested a withdrawal that was too fast. I feel dizzy quite a bit and then the arrhythmia with my heart. It's hard to know if that is the Herceptin or the antidepressant withdrawal. I guess it could be a delayed chemo reaction, but that seems odd to me (i.e. I'd expect that to crop up during chemo or soon after).

Does anyone have any insights? I'm calling my oncologist Monday in case they want me on a Holter monitor.

sportsmom16

Hi-- for those of you who had mastectomies - how long did the drains stay in -- I am on my 3rd week and still not at the 30ccs they recommend before pulling the drains-- I know it is a little thing- but its sort of driving me crazy.

Also how long was folks recovery - I am 3 weeks out of surgery- I am up to walking 25 mins a day and going to grocery store and cooking a simple dinner but that's about all-- am missing another one of my sons tournament today - long car rides are uncomfortable --

about how long before I get back to normal? I don't want to be a whiner but not sure if I should push myself more or rest more? I am about to go mad with not running around -- should I just chill? Tired of asking people for help- want to run my own show again-- any words of wisdom?

ElaineTherese

Sportsmom,

I thought I'd never get my drain out either (had only one because I had a lumpectomy + ALND)! I've heard that the less you move around, the quicker the removal. Of course, I didn't know that; I went back to work the day after my surgery. You, however, already seem to be taking it easy, so I don't know what else to tell you. Just know that someday, the drains will come out. Keep taking care of yourself; you'll be back to being hectic soon enough.

sportsmom16

Thank you! I will be patient- a new skill for me

PoseyGirl

One of my drains came out by 2 weeks, the other was 3 because I had a bit of an infection. A friend of mine had hers in for longer as she was incredibly active. She didn't really care and wanted to get back to things . But as mentioned above, they come out soon enough...

If you have increased pain, some fever, foul odor with the fluid or cloudy/stringy fluid, that's infection (and for me, fluid increased again after a downward trend). Just a heads up in case that happens. But likely in your situation, it's just that you're moving around a lot. Good luck!

sportsmom16

Thanks for the -- -- makes me feel better to know -- guess I am moving around a lot-- thank you for sharing -- helps to know what is going on with your body and that other people have gone through it too-- thank you -- really appreciate your taking the time to reply

coachvicky

Sportsmom

I found my drainage record sheet that shows dates from 12 July thru 19 July 2016. I had a PS appointment on 20 July and I think that is when the first two were were removed. I think the last two were removed 29 July.

I remember having them for so long that I thought I should name the dang things!

My PS was adamant about me keeping my arms down, tight and to my sides. I drank coffee from a straw so I would not lift my arms. I bought a TV pillow and slept sleeping upright for a long time.

For weeks it seemed my PS would only let me walk for 20 minutes in a controlled environment. No sweating.

I know life can get boring but take it as easy as you can. You are at the start of this journey and (for me) going slow at first made it easier to go fast now.

Words of wisdom .... I don't know if I have any wisdom words. I would just offer that you take care of you. It is OK to ask for help.

I had a lumpectomy on my left reconstructed breast 13 April. I was at the grocery store Saturday (yesterday) and asked for help getting a case of water into my basket. It was too heavy and would put a strain on my newest incision. It really is OK to ask for help. This was hard for me to do at first and learn to do. I discovered people like helping others.

Coach Vicky

bareclaws

I don't know about that "not moving around" thing. I started range-of-motion exercises the day after BMX, walking outside for 2.5 miles three days after surgery and generally tried to be active. Drains came out at eight days. Your mileage may vary. Maybe I'm just not very "juicy".

deni1661

Hi everyone..I had left mastectomy last Thursday and they only removed 2 nodes, both cancer free! Targeted therapy before surgery seems to be very promising, I will get full pathology by end of this week. So far things are going better than I expected. Pain is quite manageable, drain is annoying but I'm getting used to it. Bare claws you have inspired me to get active and coachvicky I will make sure to ask for help (that is hard for me!). I believe recovery is an individual experience and you have to listen to your body. I have reconstruction surgery on May 9th, I'm ready to get all the surgery stuff done with and get back to normal whatever that is

For those of you having surgery in the future, I highly recommend joining one of the surgery boards. I found many of the tips and suggestions very helpful. I felt well prepared mentally knowing what to expect before, during and after surgery plus the support gave me extra confidence when my fears crept in. I am in the April 2017 surgery group but I'm sure there are May and June groups out there too.

coachvicky

deni1661,

Best wishes on getting to your normal.

Good advice on the surgery boards!

Coach Vicky

Suburbs

deni1661, very good to hear your surgery was successful and that you are resting comfortably. Sending best wishes for a good report card from the lab and the next step in your reconstruction. Excellent news. Thank you for keeping us posted

deni1661

thanks for the well wishes! I received good news on the pathology today - clear margins and only a few cancer cells in the breast tissue. While not a pCR, my MO is giving me a 99% response to treatment. The cancer is officially out of my body, yay!! I feel this is very promising for the other patients in my clinical trial and others doing neoadjuvant treatment. It seems HP shuts down the growth of HER2+++, which is the primary objective of the clinical trial I'm in. I pray everyone with surgery coming up experiences the same great results.

Now that I won't need radiation or chemo I can proceed to the DIEP recon next week. I feel better each day - went for a 20 minute walk today. Luckily my husband is watching me like a hawk and won't let me doing anything otherwise I would do some spring cleaning lol

Praying everyone is feeling good this week and recent surgery graduates are healing nicely 😊

ElaineTherese

Great news, Deni! Hopefully, future HER2+ BC patients will be able to skip the taxane chemos because of your study! Awesome results!

If I have to get further surgery in the future, I'd think about DIEP recon surgery, too. Plenty of subcutaneous fat in the tummy area -- it would be like getting new boobs + a tummy tuck.

deni1661

Thanks Elaine! I tried to contain my excitement about the bonus tummy tuck myself lol

shelabela

Deni1661,

I am leaning towards that surgery also. Added bonus is what I thought. If I have to go through all this then I might as well try to get a better body! LOL. My PS told me I am a good candidate for that. He also said something about Fat grafting to get the size I want. Even a better idea.

Good luck! Glad you got good news

BeautifullyBroken4284

So I know it's been a while since I kinda checked in with everyone. Besides two lovely ladies whom I text with. My posts are usually rants or looking for advice. Sometime support. My update is......

On last Friday. A week ago today I did in fact meet with and got a 3rd opinion from a plastic surgeon. I have to say she was wonderful. She was so informative right down to drawing illustrations of what will be happening. Her bedside manner was amazing. I feel fortunate and comfortable with my Plastic Surgeon, as well as my General Surgeon completing my double nipple sparring mastectomy. I feel blessed they are willing to go it a go.

On the down side. Depression hit hard and it hit quick after meeting with the first Plastic Surgeon to the point of me calling a doctor and being put on an antidepressant to help cope with this awful time. It's crazy to say I'd rather keep doing chemo than to ever face this surgery, hair loss and all. With not much time to prepare, as my surgery is this coming Monday 5/8/17, I'm praying to the Lord above to have this weekend go by so slowing almost as if time is moving backwards. I'm not at all prepared mentally/emotionally for what lies ahead. I want to break down and cry so often, yet hold it in on too many occasions as to shield my daughters from seeing my fear and they are already so scared. I'm so scared too and feel like I'm dying inside 😓. I want nothing more to save my life and I refuse to let cancer take me. I hate the fact that at the age of 28, I had a partial hysterectomy due to medical reasons. Now here at 33, in just a few days I will loose my breasts to cancer. I've tried to talk to some friends very few about what lies ahead and my feelings. Yet they don't get it. I truly wish they could. Wish me luck ladies as I go under the knife this coming Monday to loose another piece of my womenhood. Then 28 rounds of radiation to follow with continued herceptin treatments every 3 weeks....

I kind of hate life right now, and wish with all of my heart that I was not dealt this hand for myself or any of us.

Private message replies as I'm not on the boards often.

Upheld

I am a newly diagnosed with invasive ductal carcinoma with a positive lymph node. I have at least three tumors in my breast and am triple positive/HER2+. I am having a PET scan, MRI next week.

Oncologist said if he doesn't find cancer anywhere else, his plan is for 6 cycles of TCHP before surgery.

Please tell me about triple positive diagnosis. Is it worse to be triple +? What can I expect from this chemo regimen? Any education you can provide would be so appreciated as I am trying to process this. Thank you so much!

ElaineTherese

Upheld,

About 25% of breast cancer patients test positive for an overexpression of the protein HER2, which encourages the cancer cells to divide and divide and divide. That's why HER2+ breast cancer is typically Grade 2 or Grade 3 and is considered aggressive. About half of the breast cancer patients who test positive for an overexpression of HER2 also have cancer that is fed by hormones (ER+/PR+). Hence, triple positive BC patients typically get BOTH targeted therapy for the overexpression of HER2 (Herceptin and Perjeta [if tumor is bigger than 2 cm]) and hormonal therapy (Tamoxifen or an aromatase inhibitor) to starve the body of the estrogen that has been contributing to the development of cancer cells.

In the past, testing positive for an overexpression of HER2 was a bad thing. Only 40% of BC patients who had HER2+ cancer were still alive, five years after diagnosis. However, with the development of targeted therapy (Herceptin and now Perjeta), the survival rates of BC patients who are HER2+ are about the same as for other BC patients. That is to say that over 90% of HER2+ cancer patients who were diagnosed at Stages I and 2 are still alive after five years, and that over 75% of HER2+ cancer patients who were diagnosed at Stage III are still alive after five years.

The big difference between the HER2+ and HER2- crowds is the length of active treatment. For example, I had five months of chemo (AC + THP) and then a year of Herceptin after that. It's a marathon, not a sprint.

TCHP (Taxotere + Carboplatin + Herceptin + Perjeta) is a very common chemo regimen for triple positive breast cancer. Since I had Adriamycin + Cytoxin and then Taxol + Herceptin + Perjeta, I don't have personal experience with this regimen. But, it is gentler on the heart than AC + THP. I do know that Taxotere can cause gastrointestinal issues like diarrhea and acid reflux and the like. I had Taxotere's (supposedly) gentler cousin, Taxol, and it gave me mild diarrhea which I manged with Imodium. There is also a very very very very very small chance of permanent hair loss with Taxotere which some patients maintain that they were not warned about in advance. (Indeed. there are some women at BCO.org who have had this rare side effect.)

Hoping that your PET scan shows no cancer spread! I've always found PET scans to be more relaxing than MRIs. ((Hugs))

shelabela

Upheld,

I am Trip+ and just went through 12 weeks of Taxol, with herceptin and perjeta every 3 weeks. And i am now doing AC

So I don't have much advice.

But I can support other ways.

Wth herceptin and perjeta I had have a runny nose the week after. With just the Taxol I was able to work every day except the day of treatment.

Sorry you found yourself here but we offer a ton of support here. Welcome

Upheld

Elainethere, thank you so much for the thorough explanation! Shelabela, thank you for your kindness. I am one of those who likes to know what to expect so I can prepare myself. That being said, I know I am not in control and I can't prepare for every contingency. But education does relieve some of the stress. What are there side effects of taking Herceptin for a year? What about also taking Neulasta? What are the side effects and how crucial is it in preventing neutropenia?

ElaineTherese

Upheld,

Anyone getting Herceptin (either as part of TCHP or otherwise) should have their heart monitored because it can cause (usually reversible) heart damage. Prior to starting chemo and Herceptin, I got my first heart scan, which served as a baseline. Then, I got a heart scan every four months until I finished Herceptin. I was one of the lucky ones; Herceptin had no effect on my heart.

I didn't get many side effects from Herceptin alone. I think it gave me a runny nose, but I always seem to have one of those anyways.

I got Neulasta shots after each of my AC infusions; they did indeed help me maintain an acceptable level of white blood cells. Some women do have reactions to Neulasta; many BC patients here take Claritin to avoid the side effects of Neulasta. I never really got side effects to Neulasta so I skipped the Claritin.

No matter what, you should remember that everyone experiences chemo and targeted therapy differently. One thing that is very helpful is to keep a journal of your side effects so you can anticipate future side effects. For example, I would get my THP on Wednesdays but it wouldn't really kick in until Friday when the steroids wore off. By Friday, I would be experiencing mild diarrhea. So, I made sure to take my Imodium on Friday morning and to know bathroom locations. (I now know where all the bathrooms are in the grocery stores in my town.)

Another thing that is very helpful is to join the chemo board of the month when you'll be starting chemo. I joined the July 2014 chemo board, and I still stay in touch with some of the ladies there.

No, no one is "in control," really. It is just another part of life that -- as the Serenity Prayer puts it -- leads us to seek serenity to accept the things we cannot change. ((Hugs))

Upheld

ElaineThere, what can you tell me about the port they put in to administer the chemo? Does it hurt when they access it? What does it feel like in your body - does it irritate you or do you hardly know its there? Can they draw your blood for lab work from this port or is only for infusion?

ElaineTherese

Upheld,

I still have my port! I'm keeping it until I pass the 5 year mark. Some BC patients experience pain during port access; you can ask for lidocaine or Emla cream if you like. The nurses at my clinic use some kind of cold spray to numb it up. But, personally, port access isn't painful for me, so I don't ask for anything. My port doesn't bother me, though it is visibly apparent if you look hard enough when I wear certain clothes. Some women hate it; I don't have a problem with it. Yes, it can be used for blood work. I have also used it for PET scans and heart scans and the like. I could not use it for an MRI because in breast MRIs, you're lying chest down.

Upheld

Thank you again for your reply! So. what are the top five things you would want me to know about what's next?

ElaineTherese

Hmmm....

1. Don't be too proud to accept help. Keep a list of practical things that others can do to help you out, and then when someone asks, you have a suggestion. For example, a friend of mine set up a Lots-a-Helping hands page for me, where I could make requests for help. People helped me out by picking up my daughter from softball practice or basketball games. Others brought me dinner on Wednesdays, when my husband was teaching a night class. And so forth.

2. Plan ahead for hair loss. I had my wig ready for hair loss. As soon as my hair started coming out in clumps, I decided it was time to get a crew cut and move to the wig. Or, if you prefer, you could research the cold caps alternative.

3. Neoadjuvant chemo gives you more time to think about your surgical options. So, now is the time to research. My chemo ended up wiping out the active cancer in my breast and compromised node. Moreover, I had tested negative for BRCA cancer, so I decided that a lumpectomy was fine for me. But if you're thinking mastectomy or double mastectomy, neoadjuvant chemo will give you the time to decide whether you want to be "flat and fabulous" or to reconstruct, as well as to research the different reconstruction alternatives.

4. As I noted above, treating triple positive cancer is a marathon not a sprint. The road can look so long, it is easy to despair. Just take it one step at a time, and don't look too far ahead. Before you know it, you will be done with active treatment.

5. Don't forget to breathe. It is easy to get numb from all the appointments, treatment, and side effects. So, don't forget that life is still out there to be lived, if at a slower pace perhaps. Take care of yourself and spend quality time with family and friends. Cancer is a reminder of the fragility of life and how we should savor it.

I'm sure others will have suggestions, too!

Upheld

Aren't Taxol and Taxotere two different drugs? I'll also be taking Carboplatin. Then the Herceptin and Perjeta. Is all of that possible by IV?

ElaineTherese

Yes, Taxol and Taxotere are different drugs, but they are both taxane chemos (so they are similar). Yes, TCHP is all possible via IV.

deni1661

Upheld, sorry you have to be here but you're in the right place. As you can see from the great responses you've received so far, there is a lot of information and support in the group! I was terribly scared about my triple positive diagnosis and especially opposed to doing chemo. I had 2 tumors far apart and enhancements in the outer quadrant of my left breast. I sought a second opinion and met a forward thinking oncologist who has been researching better treatment options for HER2. He presented me with the opportunity to participate in a neoadjuvant clinical trial taking Herceptin and Perjeta only every 3 weeks (no chemo). I started in Sept 2016 and I also take Arimidix daily. I had no obvious side effects from HP but had a runny nose, muscle aches and fatigue from the Arimidix. I did not lose my hair although it did get thinner. Within 3 months the tumors and enhancements were not visible on MRI. I worked full time throughout treatment although there were days that I had to work from home because of the fatigue. I had to have a port because I have terrible veins; the only issue with the port for me is I can't sleep on that side. I was not eligible for a lumpectomy because the tumors were too far apart. I just had a left breast mastectomy on April 27. They removed 2 lymph nodes which were clear, margins were clear and there were only a few cancer cells left in the breast. They declared I had a 99% response to the HP treatment. I am healing nicely from the MX and have reconstruction surgery next Tuesday May 9. I will resume HP treatments in a few weeks for 7 more cycles to finish out the clinical trial.

My situation is unique in that I did not have chemo but I still had excellent results. All the other women in the trial are having similar results; I was the first to have surgery. My hope is the FDA approves this treatment to be standard of care in the future for HER2 triples!

As Elaine mentioned, neoadjuvant allows you time to research surgical options. I chose DIEP because my plastic surgeon said it was the safest and there would be no need for revisions. My desire was to have as few surgeries as possible so fingers crossed. Neoadjuvant also shuts down the HER2 receptors so the cancer doesn't have a chance to spread. I changed my diet dramatically and lost 40 pounds and continued to work out 4-5 times a week throughout treatments. I removed many stress triggers from my life and started meditation. My MO felt the lifestyle changes contributed to the good response I had.

The process is long but have faith you will beat this. While I would never wish cancer on anyone, I have grown as a person from this experience. I appreciate all of God's daily gifts and have the greatest admiration for every woman who has battled BC before me. I consider all the women in this group to be friends and find comfort in their support. You will never be alone on your journey! Do not be afraid, be positive and you will be triumphant!

Welcome to our group. I wish you the very best!