TRIPLE POSITIVE GROUP
Comments
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Posey- I appreciate your reply! It's good to know that there are stage 3, triple + people doing well. Did they find your positive nodes before or after surgery?
Special K and coach- you two are beautiful!
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Yes, PosseyGirl.
We are in Florida for a second opinion of my treatment. I am seeing SpecialK's Oncologist. When I gave his name to my insurance's Case Manager, she said she had referred many of her patients to him. Small world!
Red332,
I will have a diagnostic mammogram every year and MRIs starting at year 3. Unlike the technique used before, I pull into the machine; the machine does push on me. Make sense? My breast skin is my original skin.
Vicky
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SpecialK and coachvicky, look at you, you look fabulous, you rock these heels) I am so letting my hair grow back until I have them the same length before my diagnosis
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Thank you for the answers about what to use snd not during the radiation. So, I should not order Miaderm
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Vicky, curious...what are you getting a second opinion for? Are you wondering about further steps you can take?
NPreece, at the time of surgery, there were no positive nodes...I’d had pcr. Every person can have a different number of nodes in the fatty tissue under their arm. The pathologist found 16 in the tissue my surgeon took
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SpecialK and Coachvicky, you look marvelous! Your posts have informed, supported, and encouraged me every step of the way. And they have given me hope. You have impacted my life in a positive way. I thank you
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Thank you all for the kind and encouraging words. I deeply appreciate your kindness.
Yes, PoseyGirl, I want to know if there's anything else I can do. I did not think I could get that answer In my hometown facility. My oncologist is well known, well respected, and very good. I didn't believe anyone would challenge him. I think I got good treatment I just want to know if there is anything else. I want peace of mind.
Vicky
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Wow Coach and Special...you two look absolutely stunning! How wonderful it is to see friendships born out of a mutual lousy experience. Coach, I hope you get your peace of mind. Fill us in.
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KimCee, I know it's not funny but mutually lousy experience is very quotable. It made me smile. How are you doing
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Suburbs...LOL. I did not chuckle or think about it until I read your response. Then I laughed too. I am trying to hang in there. I did great up until two weeks ago. Very emotional and I guess depressed somewhat. Just saw my oncologist on Thursday and he was shocked. Said I am in maintenance stage now (Herceptin) and surprised it hit me now. He prescribed Cymbalta but it was 250 a month out of pocket, so switched to Lexapro, hope it works. How are you doing?
Also, oncologist asked if I wanted my port out. As much as I would love to, I am keeping it. I do not want to deal with blood work and Herceptin through my tiny veins. I was surprised he offered to let me remove it.
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KimCee, I would keep the port as well. Why deal with all those sticks. The hard part is getting it installed! I am doing ok. My last Herceptin is this Wednesday. My oncologist and I apparently can't read a calendar. My insurance approved it to the end of January. There was no way I would skip one.
If you are feeling wiped out and depressed after chemo then please take it easy. These treatments are brutal. I am more surprised that your MO is surprised. And for all the talk that Herceptin is easy, it's still tough, mentally and physically. I'm always struggling to stay positive when the amount of sleep I am getting would be a sign of depression for a healthy person. The Prozac helps along with being an older drug with a $3 co pay. I am bracing myself for the nerlynx copay. Good thing you could switch to something more reasonably priced.
Rest easy.
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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.
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suburbs,
you doing the nerlynx? wil ask my onco about it. last herceptin in2 weeks..
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Vicky and SpecialK. Awwwwsome picture!
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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.
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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
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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
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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
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KimCee
Despite your journey you always find time for others.
That gift of giving will get you thru.
Love, Vicky
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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 posted0 -
KimCee, sorry you're down these days. I hope the Lexapro helps. Sending prayers and hugs your way 😊
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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.
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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
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red332 - I had a lumpectomy and was told to have annual mammogram. No other imaging
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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
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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
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Deni, thank you for your encouragement. Yep we will have those days now and again and the next will be better!
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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
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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!!!!
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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
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