TRIPLE POSITIVE GROUP

Hi KMac68. I had hair a few inches below my shoulders and it started falling out in massive clumps after week two. I eventually had it all buzzed off. I have about 6 wigs in a guest bedroom. I walk in there and ask out loud things like "Who wants to do a movie and dinner out tonight?" This is a recent occurrence. It took me a few months to laugh about anything hair related.

I felt really stiff from pain from the port but it went away after a few days. The post op instructions were priceless. "Avoid sedatives and alcohol for the next 24 hours". We really laughed at that. As if...

I've never taken anti-depressants. A few days ago, I had to start. When asked how I am doing, I reply that I'm taking Prozac and chasing it with Valium until it starts working. So I am doing great. If the anxiety or depression get to be too much or the pressure of wearing your party face for everyone else becomes to much, you might consider asking for something.

oheitsdeedee, great post. I admire your attitude. Sound like you just keep moving forward and working with the hand you've been dealt. Welcome to the triple positive group. :

DeeDee, it's so great to hear from you! You sound very positive and in control. We have similar dx, same time frame but I had to switch from TCHP to AC plus Taxol. Getting Herceptin now too, weekly until December. I had a BMX, between AC and Taxol, which was no big deal, easier than chemo, for sure! Anyway, it's only now, six months down the road from dx, that I'm startg to feel like I'm managing my treatment, and my life. My hair fell out early on, but started growing immediately and has continued to grow during Taxol (#5 tomorrow) Not fast, or thick, but my scalp is almost covered. Of course, it may all still fall out again and I'm prepared for that. I'm getting back to running, ever mindful that Herceptin can cause heart damage. Now if I could only shed the eight pounds gained over last few months

Suburbs, I love your humor with the wigs!  I haven't decided if I want to get one, living in Texas the summers are very hot and I'm pretty sure I would want to wear one, especially every day.  I've had my port for 2 days and it's already feeling less sore but very itchy with it healing. Luckily I already take an antidepressant and my Dr. gave me Xanax the day of my diagnosis which I only use if I really need it.

OhHeyItsDeeDee, Thank you for the positive vibes, they are greatly appreciated. I will make sure that I get the cold packs for my feet & hands. My Neulasta injected tonight, I took my Claritin today and advil a while ago.  So we will see how I feel in the morning. I am dreading the "Big D", I have IBS as it is and this is just going to make it worse. I am drinking water and Gatorade all day long.  You said you worked through chemo. Did you stay home the first week after chemo? I went today and felt exhausted by the end of the day and I am going to take tomorrow off.  I just don't know what to expect and when. Thank you for all of the great info.

Rufhew, I keep telling myself one day at a time, one chemo treatment at a time. With all of the things a Triple Positive brings, I feel fortunate to have this at this time with all of the targeted therapies that work so well. I know I need to let myself go through whatever stages I need to as far as grief. As with most women and as a Registered Nurse, I am the one who takes care of everyone else and it is hard to let go of that. Thank you for your words of encouragement. Hugs

oh HapB, I'm sorry if my post offended you. I wasn't trying to hit a nerve. I was just trying to point out that driving yourself to treatment was doable if you give up the benadryl. I'm really sorry.

There are some resources out there to help you. The American Cancer society is terrific. They can arrange rides for you, they can help you with getting a wig. There are even people who will come and clean your house for you if you are sick. But if you call ACS they can help you get pointed in the right direction.

Lots of hugs to you. This journey is so hard and I'm sorry you had to join us here..

Love,

Pamela

hello kmac, been good here now that i am in my 2nd year with clean results. The claritan helped alot, if you get joint or bone pain, take it day before treatment and several days after. Did not get perjeta, her diahrea is a side effect, but deends ob your diet. Crackers and peanut butter helped alot. Stay positive and lots of water, water, water.

I received my port Friday.  Said to keep large bandage on for 48 hours and then take it off, to tell you the truth I was high as a kite and remember very little of what they said.  Instructions say 48 hours remove bandage.  Weird that I worry about this bandage more than the bandages on other more sensitive places AFTER MASTECTOMY.  I cried several days b4 the port , as I knew this meant the chemo will start soon.  You all have made me smile and laugh, I love the humor and bluntness off the posts.  I seriously don't know what I would do with out you. 

Thank you for all of the info.

Yep, those infusions are expensive. That's why Perjeta is less available in countries with public health care systems. So, we shouldn't take them for granted.

Thank you everyone for your support and comments. My apologies for the late response. I couldnt figure out how to get back to this thread. It's quite comforting knowing that I am not alone and that there are strangers willing to give their time and advice. I will look into the gelcaps. Is that the same as the coldcaps? I looked into clinical trials and saw none for triple postive. I really do think that having a great support system is key. My family, friends, few coworkers (that know) and my church family have been soooo supportive. Sometimes I get tired of the how you doing calls/texts, but I know that they mean well. Lol I tell them to act like everything is normal. If we only spoke once a week prior to the diagnosis lets leave it that way. Lol not to be mean but for me to keep some normalcy.

So far I do like my team. Everyone seems knowledgeable and nice. I started chemo about a week ago. The 7 hours flew by. Sounds weird but it really did lol. My side effects are pretty much bearable except for this rash. Im thinking its from the perjeta, but Im being told its probably not. Its surrounds my neck, its on my hands and some spots on my arms. Oh and tonight I see that its on my tongue as well. Benadryl and hydrocortisone does not alleviate the itch or the visuals. I am quite concerned. Has anyone heard of this happening?

BC squad I thank you again. For welcoming me and adding a sense of comfort to hectic situation. You all are so knoweledgeable. I have to look up some of the acronyms, but its really like we have our own language.

New and strong, I had a skin reaction as well. I was prescribed steroids day 5 after infusion 1 and continued to take them until infusion 4 when my MO urged me to try to tough it out without them due to concern about long-term use. After that Benadryl worked to make it tolerable. Topical Benadryl gel and Benadryl at night worked better than the steroids and topical cortisone. Hang in there.

Hello New - I am participating in a clinical trial for HER2 triple positive and just had excellent results from my surgery. Details about the trial can be found in the link below or you can private message me for more info.

https://clinicaltrials.gov/ct2/show/NCT02689921?te...

Your positivity will get you through this. Take care, sending hugs

deni1661 participated in a trial where she just did Herceptin and Perjeta, plus hormonal therapy. See deni's recent posts above for information about that trial. You might ask your doctors about whether or not you might qualify for that study.

Yes, even if you're stage 1, chemo is typically recommended to triple positive BC patients. If your tumor was smaller than 1 centimeter, your doctors might have recommended "chemo lite" or Taxol + Herceptin. However, since your tumor is bigger than 1 cm., I suspect that your doctors will either recommend Taxotere + Carboplatin + Herceptin or Adriamycin + Cytoxin and then Taxol + Herceptin. ((Hugs))

Hi HapB!

If your cancer was invasive, it was probably sustained by a blood supply, which means that cancer cells can be floating through your blood stream now. Furthermore, just because your nodes were clear doesn't mean that cancer cells haven't made their way into the lymphatic system. Cancer doesn't spread like a stain on your dress; it is a systemic disease that can float around in your bloodstream and in your lymphatic system, looking for a new home like your lungs, liver, bones, and brain. Chemo and hormonal therapy are systemic treatments that attack cancer cells throughout your body, not just those in your breast.

Actually, most women with triple negative cancer get chemo even for stage 1. Moreover, women with ER+/PR+ may not do chemo because their oncotype scores are low, but they are all advised to do hormonal therapy, which is a systemic treatment.

So, no, your doctors will not view surgery as enough for HER2+ cancer, even if it is stage 1. Before Herceptin, only 40% of women with HER2+ cancer were still alive after five years. Since women are typically given Herceptin and/or Perjeta with a Taxane chemo, I'm sure that your doctors will recommend chemo for you unless you opt for a study or trial that doesn't require it. ((Hugs))

Hi Hapb - congrats on the great path results. I can relate to your angst regarding the need for chemo, rad, and HP. It's especially hard to understand the need when the cancer is not present. I was fortunate to participate in a neoadjuvant clinical trial without chemo (HP only 6 months before surgery and 6 months post). Tumors were not visible 3 months into treatment! I was expecting to have a lumpectomy because if the tumors weren't visible why would they need to remove the whole breast, right? My MO and BS said that HER2 triple is so aggressive that even 1 cancer cell left behind can turn into a recurrence. My MO said treating HER2 with the current standard of care protocol provides the best possible survival rates and lowers the chance of recurrence. I am so glad my doctors insisted on the mastectomy because they did find a few single cancer cells left behind. They would not have found those cells if I had the lumpectomy. I have since learned to trust whatever my MO recommends.

I'm not sure if you would qualify for the HP no chemo trial since you already had surgery. You might want to discuss the option with your MO to get his/her opinion on the no chemo approach.The clinical trial info is listed below. My MO has had several BC patients outside the trial that chose not to have chemo and did well with HP only. I think the outcome depends on the individual as our bodies are all different and responses are also different. As Elaine mentioned in her post, treatment options for triple positive may vary and that can add confusion when determining which is best for you.

I think it is very wise that you are questioning your treatment options. I did the same when first diagnosed which prompted me to get a second opinion. That second opinion led me to my MO and the clinical trial. I am grateful for my results and credit my doctors and the cancer center's treatment philosophy.

Good luck with your decision. Feel free to PM me if you want more info 😊

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