TRIPLE POSITIVE GROUP

KimCee

Thank you Hap, I do not have any bone pain. I am emotional. Sad, not myself. I have an echo this Friday too...hope Herceptin did not do any damage. Oncologist wants to wait a month to start AI since I am not myself, thinks the lexapro will kick in by then. Hope so.

kae_md99

suburbs,

you doing the nerlynx? wil ask my onco about it. last herceptin in2 weeks..

moodyblues

Vicky and SpecialK.   Awwwwsome picture!  

KimCee

Suburbs...do you have any idea what the nerlynx co-pay may be? I hope they don't just spring some crazy figure upon you. And did you start Prozac during treatment? Remember the pinky swear, we all will do well on nerlynx.

Thank you Hapb. I am keeping the faith.

coachvicky

KimCee

Holding you close on my prayers. This too shall pass. You have done great ... this is just a bump because 3+ is so long and hard.

It will get better.

Keep the port. Demand the Herceptin goes on slow and not 30 minutes.

Is there anything I can do?

Love, Vicky

KimCee

Thanks Vicky

You already help with your pep talk, sweet, emails. I am keeping the port and I make them run Herceptin over 60 minutes versus the 30 minutes it is slated for. Praying for you as well, hope your appointment with SpecialK's oncologist goes great, and you get that peace of mind.

Love you xoxo Kim

Juli24

KimCee, Prayers coming your way. Lexapro worked great for me after failure on another. I have awful veins so still have my port in. I get more blood work than usual since I refused AIs. Some months I only need a flush. Our insurance covers it so I figure what the heck

coachvicky

KimCee

Despite your journey you always find time for others.

That gift of giving will get you thru.

Love, Vicky

deni1661

Specialk and Vicky - you two are beautiful! How awesome that you were able to meet. I am grateful for all the encouragement, support and inspiration you both provide with each posting. It's unfortunate we're in this "mutually lousy experience" together (thanks Kim for the chuckle!) but I feel immensely honored to be part of this most thoughtful and caring group of women.

Coach, may you find peace of mind with your consultation. Keep us posted

deni1661

KimCee, sorry you're down these days. I hope the Lexapro helps. Sending prayers and hugs your way 😊

GodsWithMe

Hi All, I'm new here too like you Npreece and am starting Herceptin/Taxol this Thursday. Reading all of your posts has given me such encouragement! I know this will be tough, but I will get through it. I have already had radiation, which I felt was relatively easy. I chose to proceed with chemo since the invasive portion of my tumor was 4mm and my MO said treatment was recommended for anything 5mm and larger. 1mm was not enough of a difference for me! I'm hoping for gentle SE, and will take all of your advise as I go.

deni1661

Poseygirl - glad to hear you're doing well. You have inspired me to get back on track with eating right and exercising more consistently.

Moody, I think Posey is right...one day we feel fine and all of a sudden the sadness hits. I'm lucky mine usually lasts a short time but it pops up out of nowhere and is quite annoying. I hope today was a better day for you. Sending hugs

Blownaway

red332 - I had a lumpectomy and was told to have annual mammogram. No other imaging

Blownaway

I wore a sports bra with a Kotex strategically placed between the bra and my burned skin. I was prescribed a cream called silver sulfadene ( Ithink that was the name) but this was prescribed after my burned skin started to let go.

Hap - I have been on carvedilol and lisinopril ever since diagnosed with LVEF of 35. Last check up I was up to 52 or so but I'm told I will take these drugs for life to protect my heart. What are you taking for heart failure

coachvicky

Best wishes GodsWithMe with your chemo.

Please walk, move, do something and work with your chemo. I found that walking made it easier.

I am sorry you are here in this "mutually lousy experience" (Kim's great line!). I have found the women in this community awesome in their support. Let us know how we can support you.

Vicky

moodyblues

Deni, thank you for your encouragement. Yep we will have those days now and again and the next will be better!

moodyblues

GodsWithMe. Welcome to our group of strong women who unfortunately have come together through this disease called breast cancer. You will find lots of encouragement, information and love here. I have found this place to be a place of rest and release. We can vent our frustration, express our fears, share our stories and tears with those who truly understand what we are going through. The amount of support I have received here has made a great deal of difference in going through this detour, I am sure it will do the same for you.

((hugs))

Melanie

red332

Thanks Vicky and everyone who responded to my question about your post-surgery imaging schedules. at my hospital (major cancer center) they do mammo/ultrasounds only annually after treatment (although i will get my first one basically after 6 months since it will be a year since my contralateral breast was imaged) and after mastectomy, no imaging at all except the every 3 year MRI to check implants (which is a different protocol than a diagnostic MRI). i have a call into my second opinion doc to find out if their hospital uses the same protocol as this is impacting my decisionmaking (re-excision vs mastectomy).

@G-dswithme-- i have my last taxol/herceptin treatment tomorrow, and i have had a pretty easy time of it compared to many. i highly recommend icing hands and feet during treatment if your center offers that, to help avoid nail changes and neuropathy. it has worked well for me--i have had only mild, transient pains in fingers and toes. i also take l-gluatamine, see an acupuncturist once a week (day of or day after treatment) and do moxibustion (at home, every night). my hospital has an integrative medicine center and they approved of all of this as well. main symptoms for me were digestive (stomach cramps/mild diarrhea) and a mild headache each week that started on the third day after treatment and lasted a day or two. plus a nasty case of acne (from the steroids, i think). otherwise, i have felt pretty normal. good luck to you!!!!

coachvicky

Hello Ladies!

I had my second opinion appointment this morning. I promised an update. This is it.

First, a BIG THANK YOU to SpecialK who showed up at my appointment. DH and I felt so very supportive.

In my DH's words, "I really like him (Dr.Wright). It was his interpersonal skills; he had studied my case, knew what questions to ask, and seemed very compassionate and caring." I concur.

Here is what we learned:

The stage of breast cancer was less than we were told elsewhere. Staging was by cancer type and breast, not a cumulative stage of both. (FYI, I had different cancers in each breast.)

The different pathology reports of some tissue classified as HER2 negative and positive means that the Herceptin I received for one year was the best treatment as it eliminates any doubt.

Carboplatin was the chemo drug that was best for me. Therefore, Taxotere, Carboplatin, and Herceptin were the best regimen possible for me.

The likelihood of cancer returning in my body is extremely low. If it were to return, June 2018 to June 2021 is the timeline (2 to 5 years). Continuing to take the daily estrogen blocker and Prolia injection every six months will help to ensure I remain cancer free. At the five-year mark, I should take the Breast Cancer Index test to see if another five years of an estrogen blocker would be beneficial. The Prolia injection goes beyond helping me maintain bone density and provides about a 2% resistance to a cancer recurrence.

If the joint and bone pain I experience becomes worse, there are other estrogen blockers. However, Arimidex is the oldest and the best.

The hysterectomy was a great call on our part.They encourage their breast cancer patients to talk to a Gynecologist about the benefits of a hysterectomy. This was the first time that I felt medically supported in this decision except for my Gynecologist and the willingness of my PC to leave the decision with us and my Gynecologist.

It is critical that I stay healthy, eat well, and exercise. In over six decades on this planet, Dr. Wright was the first doctor that ever said in his opening remarks I looked healthy and as one who regularly exercises. He said we had done everything right and to continue on this path.

I have peace. I know we have done everything possible and my treatments (bilateral mastectomies, chemo, Arimidex, Prolia) were spot on.

Thanks for listening and all of your support.

Vicky

emily_mh

Hi Cherry, I just had number 20 of 25 radiation treatments and my skin is doing really well. It looks only slightly tan. Right after radiation treatment I apply Aquarphor before I get dressed and then I apply it again at night. I take a shower in the morning before radiation because the dr. didn't want anything on my skin 4 hours before radiation.

Special K and Vicky, I echo a lot of others on this board in saying how much your posts mean to me. I do not post a lot but I check in and read up on everyone and you both, along with many others, are so kind to take the time to answer questions and spread some kindness. So thank you both and thank you to everyone who posts and thank you to those who don't post but I know are thinking of everyone.

SpecialK

coach - I am so very glad that you liked Dr Wright, felt his genuine caring, and got the information you were seeking. I felt somewhat responsible for your trip to see him - like a matchmaker, lol! -and I’m glad he didn’t disappoint! It sounds like you had a thorough discussion and he addressed your concerns in a way that provided that ever elusive peace of mind. He has been a beacon of light during my treatment, I wouldn’t trade him for anything!

red - yay for the last one! I have not had what I would call regular imaging - had a pre and post chemo PET, a post Herceptin PET, and one at the 5 year point. Due to skin healing issues I have not had any of my implants for 3 years so have not had a MRI to check integrity.

Emily - good to “see” you - glad to help!

coachvicky

SpecialK ...

You are a great matchmaker. If he passes DH's test, he is a keeper doctor.

I pray everyone in this 3+ community can know the peace I feel today.

It gets better and better ladies.

Vicky

Cherry-sw

coachvicky, sounds great, it will give you a peace of mind. I am considering a second opinion on the follow-up myself

Cherry-sw

emily_mh, thank you. I will look up Aquarphor and will book myself into the radiation preparation test tomorrow

red332

coachvicky, i LOVED reading your post. you sound so happy. that is great!

if you don't mind my asking, did you have a full hysterectomy or an oopherectomy? Did you have any genetic markers that put you at greater risk, or is this something that the new oncologist recommends for all patients?

red332

has anyone in this group had TDAP reconstruction (post-lumptectomy). this was just floated to me as an option for the first time. will also post in the reconstruction group.

KimCee

Vicky...your post made my day!!! So very happy that you got your peace of mind, and that you found out that everything you have done and gone through was the best choice. I could see you smiling as you typed. I am thrilled for you.

SpecialK...you are indeed Special.

LaughingGull

Hi ladies,

Just introducing myself. Diagnosed in November, Stage IIB, finished 4 treatments of dose-dense AC (every 2 weeks) and just started Taxotere + Pertuzumab + Trastuzumab. I am still shocked by this diagnosis and I am a bit of a train wreck. Went for 2nd opinion today and doc said he would have done weekly Taxol rather than Taxotere. Now I am agonizing about that. Can someone elaborate on Taxol vs Taxotere effectiveness in this neoadjuvant setting for Triple Positive BC? What are the chances of complete pathological response with this regime?

Cheers to all and thanks in advance.

Laughing Gull

coachvicky

Red ....they took everything. My GYN said if you were my wife, I would take it all. I had a robotic hysterectomy. Real easy recovery.

Vicky

coachvicky

Yes Kiim ... it was wonderful and SpecialK made it so.

Vicky