TRIPLE POSITIVE GROUP

coachvicky

Dear Upheld

I am sorry you find yourself here. I am also happy that your are finding others to answer your questions.

Here is my 2 cents.

This site has great easy to read articles specific to your diagnosis. Use this research to understand your cancer and treatment.

I got the port. It sure made my treatments easier. You will get a cream to put generously on it 30 minutes before treatment. Use Glad Press and Seal over it so it won't get our your shirt.

Go to the Rapunzel Project and see if you can control your hair loss. I only loss maybe 40% of my hair.

You can also control your exercise. The best advice I got from a Survivor was to walk. KB870 comment about her swim group and feeling normal is wise advice.

You don't have to move or act like the woman in the Neulasta commercial. ElaineThere is so right. This is a marathon and you can control your pace. I took the shot returning to my treatment center the day after. I found the chat with the nurse very valuable in her checking on me and giving advice.

She is also right about savor life. Stay open to the lessons this journey will teach you.

Before cancer I could easily see a 1/2 empty glass. The cancer journey has taught me to see the smallest drop making the glass 1/2 full and find something positive. Frankly, I owed it to my husband to stay positive. He has worked his butt off to care for me and keep our business going. He became my inspiration to do better each day as to how I handled this.

I did hire someone to help with the housekeeping each day of treatment which was every 21 days. When I came home from treatment the house was cleaned. That did a lot for me being able to come home and not see "work" to do or ask my husband to clean the house.

Some people will come forward and help you in ways you will not expect. A friend harvested100 pounds of sweet potatoes from the garden I planted just before diagnosis. She cleaned them and wrapped them for the winter. She called everyday after I had a surgery on her way to the grocery store to see if we needed anything. I never knew she cared that deeply.

Sadly, some people will leave your life. They won't know what to say or do so they say nothing and do nothing. Stay focused on those who surround you with their love.

Best wishes. Stay strong.

Coach Vicky

BeautifullyBroken4284

Upheld,

I've responded to your private message. I just wanted you to know.

coachvicky

deni1661

That was a great post!

Coach Vicky

Upheld

Yes it was! And so was yours Coach Vicky! I am overwhelmed by the kindness on this board. My question for Deni1661 is, did you have a positive lymph node on biopsy? I have three tumors visible and then a mass that they are doing an MRI on next week. I'm wondering if the regimen you described with no chemo would be possible with a positive lymph node and multiple tumors.

PoseyGirl

Hi Upheld,

Another triple positive gal here...

I am guessing you'll be strongly encouraged to do chemo. Whenever HER2 is involved and it's stage 2 or more, I think they want to go with chemo. But of course, it's ultimately up to you.

I am finished all treatment except Herceptin every three weeks...this week is number 13. I do get a few symptoms from Herceptin, but most people don't. In the beginning, I got chills all the time. I also got a tiny rash (or just isolated and itchy spots). The spots don't happen any longer and the chills are minimal. I get a few aches and pains but they dissipate quickly too. Some people get headaches (they'll give you Tylenol prior to your treatment usually).

Good luck with your treatment...Oh, and Iost my port 4 chemo treatments in! It actually eroded through my skin and they took it out. But that happens rarely, so you won't have that. I just think I'm very slight of build on top, so there wasn't a lot of tissue to work with.

I was fortunate that not many people 'disappeared' from my life, but there was one friend who I was very surprised about. She managed to say something about a week after I posted on Facebook, but then basically disappeared. We chatted a couple months ago when I reached out to her, but I was quite surprised. And I faced a few people who said really stupid things because they don't know what to do and are trying to make some kind of connection. But for the most part, I have been surrounded by the same loyalty and beautiful people I have always known. My credo now is that if someone is upsetting you, you tell them exactly how you feel and what you need .

Beautifully, best wishes for your surgery. Really, no one but those who are in our shoes can really understand what this whole trip is like. It strips us down and we have to build ourselves up brick by brick again. I cried constantly for several months. I am almost one year in, and I still cry a few times a week. We are grieving the loss of things we took for granted before - like our hair, like not thinking of every ache and pain, like not looking at scars on our chests in the mirror, like sudden menopause (I had an oophorectomy end of March and now I have some symptoms and am wondering what the h-LL they are. It just adds up, so a good cry is important, not to mention reaching out to tell people who are close to you that you are struggling. I find that really helps.

I have a friend who just emerged from breast reconstruction last week and she's doing great. I am sure you will too. It's a huge step and another reminder of all you've been through - all we've all been through. Your feelings are natural and I think you will move through that stage soon once you get recovery well underway...best (or breast) wishes...

ElaineTherese

Hi HapB!

Doctors advise all patients with triple positive cancer to get chemo + Herceptin. (See p. 1019 for my explanation of triple positive cancer, provided in a response to a post to Upheld.) However, some like deni1661 are part of studies where different regimens are explored. Deni1661 only got targeted therapy (Herceptin + Perjeta) and had excellent results.

You don't give us your stats here (size of tumor, e.g.), but it seems like your tumor is small or you wouldn't be doing 12 weeks of Taxol (the only taxane which would prescribed in weekly doses). Taxol + Herceptin is a relatively gentle chemo regimen. I had it after four doses of Adriamycin and Cytoxin, and it was OK. It gave me mild diarrhea.

I'm sorry you find yourself here. Cancer is no fun, and getting it twice sucks. If you want to learn more about deni1661's study, why don't you send her a personal message? Then you can talk to your doctors about whether or not you might qualify for that option. ((Hugs))

coachvicky

HapB

I have my treatments at Clearview Cancer Imstitute in Huntsville, Al.

Getting chemo was a pretty easy decision. My husband asked my Oncologist what would happen if I decided not to take chemo. He said "She doesn't have to take chemo. But when her cancer returns and it will return without treatment, it will be lethal."

I said, "Can I start Monday?"

This conversation is etched in stone in my mind. It makes the treatments easier.

Coach Vicky

coachvicky

HapB

I have my treatments at Clearview Cancer Imstitute in Huntsville, Al.

Getting chemo was a pretty easy decision. My husband asked my Oncologist what would happen if I decided not to take chemo. He said "She doesn't have to take chemo. But when her cancer returns and it will return without treatment, it will be lethal."

I said, "Can I start Monday?"

This conversation is etched in stone in my mind. It makes the treatments easier.

Coach Vicky

Moderators

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deni1661

Thanks coach Vicky and Elaine - you inspire me with all the great info you've provided to so many in his group! My MO basically said the same thing i.e. without treatment chance of recurrence would be far worse. Chemo would have been necessary if my tumors did not respond to the HP; I was blessed to get the results I did.

Upheld - I had "unremarkable" lymph nodes when I had my two breast biopsies. There was slight swelling but nothing showed up on ultrasound so they decided not to biopsy the lymph nodes. I had 2 tumors far apart and enhancements on the outer quadrant of the left breast. I am being treated at Cancer Treatment Centers of America in Zion, IL (Chicago). They have 5 locations in the US. The link to the trial is https://clinicaltrials.gov/ct2/show/NCT02689921?term=NEOADAPT&rank=1

HapB, I'm so sorry that you have to go through another cancer. Welcome to our group, the ladies here are just awesome and we're all in this fight together! I can relate to you not wanting to have chemo again. I didn't want it either when I was diagnosed which prompted me to seek a second opinion. Thankfully my MO just got FDA approval for the triple positive trial and I was the first "official" participant. I think there are 8 women currently on the HP no chemo protocol and all have experienced tumor shrinkage. I am beyond grateful for the forward thinking of my MO and the treatment philosophy at Cancer Treatment Centers. The trial link is https://clinicaltrials.gov/ct2/show/NCT02689921?term=NEOADAPT&rank=1

I would be happy to provide more info on the trial. I'm having recon surgery tomorrow so I won't be able to post until later this week. The trial link provides contact info - my MO is an amazing man and very passionate about this trial. I'm sure either he or his research consultant would respond to any inquiries.

Best wishes to you both, stay strong

deni1661

Another link on the clinical trial:

http://www.cancercenter.com/clinical-trials/

This is the trial I am in:

NEOADAPT – A phase II study of NEOADjuvant Aromatase inhibitor and Pertuzumab/Trastuzumab (NEOADAPT) without chemotherapy for women with breast cancer

ElaineTherese

Hap B, I finished Herceptin in December of 2015. I drove myself to and from chemo, but one thing to consider is your reaction to Benedryl. Many women get drowsy on Benedryl and sleep through Herceptin as a result. You may want to consider your support network if you feel like you won't be able to drive home alone.

Suburbs

Hi everyone. My staging was hurried which has bothered me from the onset. The first surgeon did not deem it necessary to follow up on a chest X-ray that had a result contradictory to an earlier X-ray. I raised the issue again to my oncologist (my hero in this drama!) and a scan was recently ordered. Now I am dealing with the hell of another specialist, consult, procedure, possible biopsy, and waiting for information while dealing with the after effects of TCHP infusion #5 (complete exhaustion). I'm worried. Will this impact my surgery which was just finally scheduled?

I wish I knew then what I know now. I wish I knew now what I'll have to wait another month to find out. Everyone's situation is different. Staging is a whirlwind as one goes from appointment to appointment and waits for results. I did not have sufficient time to educate myself. Decisions about my life were made by others.

For the newcomers here, keep your questions coming. Leave no stone unturned. Ask and ask again. No question is stupid. If someone tells you to stay off the internet, tell them to go fly a kite.

Thanks for listening.

coachvicky

Suburbs,

I am so sorry for your wait and dealing with this saga. I know you will come out on top!

Thanks for the reminder that all questions are welcomed.

Please ask your MO if you are a candidate for an iron infusion. I had one 2 weeks ago. Yes, I am still tired but I am not fatigued, weeping, brain confused. I did not realize how chemo induced anemia was effecting my quality of life. Had a LONG TALK with the MO Team to ensure they do not allow me to get that ill again.

Best Wishes!

Coach Vicky

Suburbs

coachvicky, thank you for your kind thoughts and the advice on iron infusion. It's on my list for next appointment with the oncologist.

And again, newcomers, please don't be scared off by my personal pity party. Keep those questions coming. I have learned a few new things myself from all the thorough responses so far. I am so grateful for this community.

coachvicky

Suburbs,

Glad it is on your list.

When you get yours (and don't let your MO say your labs aren't low enough ... Focus beyond the lab numbers and your side effects) make sure you eat a citrus acid raw fruit. The Dietician at the Center I go to said to eat strawberries and or oranges. I ate a Halo when the infusion first started and slowly consumed 2 more during the 30 minutes. I continued for a week with at least 2 Halos a day. I did not get nauseated like everyone warned me that I would.

Who knew!

Coach Vicky

kae_md99

hi all,

has anybody here had surgery 6 weeks after the last chemo? that is my surgeon's plan. i guess i am just worried because if i dont achieve PCR, the remaining cancer cells will have time to multiply.thanks!

BellasMomToo

kae: My UMX was 6 weeks PFC. The path report shows that my tumor shrunk from 2 cm to 1 - 4 mm and there were no active cancer cells. My SNB was also negative. So my BS and MO have declared me cancer free.

kae_md99

Thanks BellesMom

kae_md99

Thanks KB870. BellasMomToo, was the 1-4 mm that was found made up of dead cancer cells? i asked this because, i had an mri after 4th cycle ofTCHP and result showed the tumor was reduced to half its size. my MO and i were a bit surprised because we cannot feel the lump that was palpabale before. my MO said she hoped some of it are inactive cells. we were going to stop at cycle 4 due to SE's but my MO does not feel comfortable doing that after she saw the mri result. so 2 mo cylces for me. i had an appointment with my surgeon the following week and he too cannot feel the tumor anymore. i am still glad that chemo shrunk my tumor and i pray the last 2 cycles will wipe out the remaining cancer.

BellasMomToo

The 1 - 4 mm of tumor left only had dead cancer cells. BS mentioned that the tumor looked like swiss cheese.

After my first round of TCHP, my MO could no longer feel my tumor so we had hoped that it completely disappeared. But it didn't. But if it looked like swiss cheese, that would explain why she could no longer feel it -- it wasn't a solid mass anymore.

kae_md99

thanks BellasMoMToo

moodyblues

I have finally seen my new oncologist and we have set up Pet Scan, Echo and Port.  My question is that my original ONCO (I moved and hadn't started chemo yet) said I would have Taxol, Carboplatin and Herceptin (possibly perjeta), 1 time a week for 12 weeks, he told me that the new onco may have some differences, but not to worry, BC treatment pretty much follows same guidelines everywhere.  The new onco said 1 time every three weeks for 6 to 8 treatments with me having the same drugs.  Is this normal to go one time every three weeks?  I wonder which regimen is the best....any ideas?                                                                                            (crossposted)

Upheld

Moodyblues, my regime is exactly like yours and I am taking the Perjeta. Also, Neulasta. I am getting the results of my PET scan tomorrow to see if I have mets. If not I will begin the chemo May, 30th

moodyblues

Upheld.  Thank you.  Praying for excellent results tomorrow! 

Upheld

Thank you! I covet your prayers.

Soxfan75

moodyblues - Are you sure they didn't switch it from Taxol to Taxotere for the every three week regimen?

moodyblues

Upheld.  Did you have surgery or lumpectomy, was there any lymph nodes involved?  You don't have to answer...just curious.

moodyblues

Soxfan.  I wrote Taxol yesterday with the new onco, and I looked at my notes from the previous onco and he also said Taxol.  Is there something I am missing?   

Soxfan75

moodyblues - You're not missing anything. I just never heard of that regimen and would be curious to know how your diagnosis differs from mine in order to use Taxol instead of Taxotere. (I've heard Taxol is easier on the hair, which I'm trying to save with cold capping.) I'm guessing because they found a microscopic cancer cells in 2 of my 4 lymph nodes, that's what makes the difference. No idea though.