TRIPLE POSITIVE GROUP
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Good Afternoon Ladies (and the few gents)! You are all amazing and I am so impressed with all of the information & research as well as the love and support you provide to all of the posters on a daily basis. I am jumping in and joining here (I have been part of the Sept 2016 chemo group), but as I am also Triple Positive I have been reading through all of the older posts and have learned so much. I am having round #4 of TCHP on Friday and happily counting the days until I finish out with the "hard" chemo (I actually call it "ugly" chemo). I have been having great results with my treatment so far and my MO has not been able to find the tumor since my 2nd round (I haven't had an MRI or anything yet - they are waiting until treatment is over). Still optimistic and checking off the miles in my marathon!
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BeachBabyK!
Welcome! Congrats on making it through three infusions! Soon, you'll be more than half-way done. Yes, it is a marathon. I just saw my OB/GYN today -- he can't even feel my ovaries because after all the Zoladex/Aromasin I've taken, they've shrunk.
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Elaine Therese,
That sounds positiv. I am thinking maybe I should discuss removing my ovaries completely, I am not having kids, too old, but if you plan to have them this might be negative I suppose. I hope some seniors with more experience can advice.
Beachbaby, so happy to hear about your progress..amazing respons..there is hope!
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Kattis, my OB/GYN insists I keep my ovaries. he won't even discuss having them removed. says they provide too many other benefits.
I still don't have my MRI results. I even called MOs office this afternoon. no answer. not posted on the portal. I just want my results. I'm sure no news is good news but come on people! Waiting is torture...
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Waiting IS torture, and fear is the worst side-effect of cancer treatment. I hope you get good news soon.
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Tresjoli,
Totally relate. The "waiting game" is pure agony. I take anxiety pills to get threw it.
I hope you get good results...keeping fingers and toes crossed...
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Ugh, Tresjoli! Hope you get some answers today.
Kattis,
I tested negative for the BRCA1 and BRCA2 genetic mutations, so ovary removal isn't considered necessary in my case. My old OB/GYN didn't like to remove ovaries that didn't have cysts or other problems. He said that overall, women who keep their ovaries tend to live longer. My new OB/GYN (old one retired) says it's up to me. With three kids and a full-time job, I am not eager for more surgery. So, I just get my monthly Zoladex (ovarian suppressor), and leave it at that.
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I got the all clear!! woo hoo!
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Awesome, Trejoli! Congrats!
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Yay! Trejoli! Cheers!!
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Fantastic! I imagine you are swooning with relief. Enjoy
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Congrats Trejoli!!! Fantastic!!!
My appt is in 2 hours, nerves are starting.
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Good luck, Leslie! Let us know how it goes for you!
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That's great Tres!
Seriously this conversation about keeping vs. not keeping ovaries is really interesting, because I have spoken to my midwives (super conservative), a very good friend who heads the OB GYN division at a local teaching hospital, my MO AND the gynecological surgical oncologist at Dana-Farber and they all said go right ahead and remove those ovaries if I want to. They are so suppressed at this point (or should be anyway) that it doesn't matter.
I'm interested in hearing the benefits of keeping them vs. not keeping them?
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fingers crossed Leslie! I will ask my OB/GYN about the why when I see him on November 18th. he just shut me down when I tried to bring it up and I let it go. but he was emphatic. let me see what he says and I'll come back to post...
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Thanks ladies. It was ok. Still have the catheter in my wrist for them to come hydrate me for the next few days, so that's a pain, but otherwise, I'm pretty good so far. Asked a bunch of questions during it, understood the answers, stuck around and did the pre-chemo workshop. Didn't really learn anything new from it, but it did clarify a few things so I guess it was worth it even if it did make for a long day. Going to stay up to take my other med, then going to to hit the hay and hope that tomorrow I feel just as good!
Need to go back to the hospital for my neulasta shot, and hope that the nurse shows up for the hydration at a reasonable time so I can get some stuff done while I'm feeling ok. Other than that, the next few days are about relaxing, hopefully wig shopping, hydration and waiting for side effects!
Oh...my appt was booked for 3 hours, but it only took about 2!! Will be thrilled if that continues.
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YAY Congrats Tres !!!
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Trying to catch up, so much has been going on, but I wanted to read up how everyone was doing.
Do you know, what's with the 2 weeks vs 3 weeks Herceptin infusion?Onco just changed the protocol to every 2 weeks.
And7894 my 2 cents for you, it's a good idea if it's only once a year, you should still have a relationship with Onco. If any questions arise, you are still a patient, and you won't be a total stranger. This is my take on any kind of chronic illness.
Rozem , fightergrl My daughter was in her late 20's when the mets showed up, she then was told to have a total HX, oophorectomy. She did it laparoscopically, it went very well. Of course, I wonder if it would have been beneficial to do it before the mets, she was on Lupron, but we will never know.
DeniseG how did you ever manage? BRCA is at play here? How is everyone doing now?
Ashla my daughter is on Xgeva. Every 4 weeks, some people do it every 3 mos. There are cons and pros from what I understand, most ladies with bone mets will tell you they take some form of this. Yes, it's a good idea to take care of your dental work prior to starting this program.
Tresjoli I think pity parties are great. It's very tough to go through such life upheaval. Just remember to recharge again. Fantastic news.
Fell well everyone.
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just catching up
Tres...happy happy happy for you!
fightergirl - I'm going to PM if you if that's ok, very interested to see what the DF folks said as this was going to be my second opnion
momallthetime - if your daughter was on Lupron it does the exact same job as removal so don't have second thoughts on that. Removal is permanent and they most likely want her to try the different AI's to treat her mets - praying for NED for your daughter
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@fitergirl - the younger you are and the the farther away you are from natural menopause, the greater the potential for negative long term effects from having the ovaries removed (bone health, cardiovascular and neurological health, etc). Even post menopause, the ovaries continue to produce androgens/testosterone. The adrenals do as well, but once you have your ovaries removed the adrenals don't pick up the slack, so your body will have lost ~40 to 50% of it's supply of post menopausal androgens. All of these things have the potential for negative effects on our body, so you really have to weigh the pros and cons before removing any organ from the body. I just had my ovaries removed this past April and don't regret it. But I was 54, perimenopausal for a number of years, and hadn't had a period for 18 months due to the chemo. So I felt pretty confident in my case, that the pros probably outweighed any cons.
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Thanks Amy, I'm 45, and I'm on Lupron + Letrozole now, and likely will be for 5 years at least (unless some other medical solution comes along.) So, considering how long I'll be on ovarian suppression with Lupron, and androgens/testosterone production prohibited anyway, I feel like eliminating a drug from the maintenance regimen is the lesser of two evils. That has been my way of thinking, in any case.
I've been menopausal since I started chemo last January.
I have been assigned a new MO who I meet with next week, so I'll get yet another opinion. It's all been pretty much if I feel like dealing with the surgery, then go for it, otherwise it's six of one, half dozen of he other.
My first MO was amazing, she's moving to Seattle to be with her family. I'll miss her.
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ladies, pardon the personal question, but I was wondering if any of you are taking antidepressants? if so, which one? I had heard that some of them interfere with tamoxifen? I have had depression in the past, and the sneaky devil is worming it's way back in, and I'm thinking about seeing my doctor, but want to make sure we pick the right medicine that won't interfere with the tamoxifan? thx...
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Hi Tresjoli!
I'm on Celexa, chosen by my MO because it doesn't interfere with Aromasin. I started the Celexa because Aromasin was making me seriously moody. I've always had mood problems with hormonal changes, during pregnancy and right before my period. So, I wasn't surprised that Aromasin had that effect on me. I figure if I'm going to be on Aromasin for 10 years, they may as well be 10 happy years.
I'd ask your MO about what anti-depressants don't interfere/interact with Tamoxifen. I'm sure he/she will have some suggestions. Hope you feel more yourself soon!
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Wondering if someone can tell me how docs decide who gets the Oncotype test. I was never offered it but I was highly ER+, PR+ and Her2+. Is that why? Thanks!
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jpr143,
Oncotype Tests are only offered to women who are ER+, HER2-. If you are HER2+, and your lump is at least 1 cm, the standard treatment is chemo + Herceptin.
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Thank you Elaine. That's what I thought I had read somewhere but I thought I saw some triple positives that had that test done. Maybe it was because the original path was her2 - but the final path was her2+. Also, you cannot have Herceptin unless you have chemo too, correct?
I know it seems crazy but I'm just going over my treatment choices in my head again. My BS and RO recommended chemo but when I first met my MO he made my husband and think chemo was optional even though the other docs recommended it and I needed it per NCCN guidelines. I'm glad I didn't put much stock in what he said!
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Actually, a few women have been able to get Herceptin without chemo, but most get Herceptin with a taxane (Taxol or Taxotere). Women who have HER2+ cancer but lumps smaller than one centimeter sometimes get just Taxol + Herceptin. My lump was big (5 cm.+), so I got both AC + Taxol, plus Herceptin and Perjeta. Because your tumor is smaller than two centimeters, you will probably just get Herceptin and not Perjeta (unless you really want it and your oncologist can convince insurance to pay for it).
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JPR all i could say, my daughter was on Herceptin and no chemo, and now she is on Herceptin with chemo, just because there is progression. I asked Onco many times about Perjeta, she keeps telling us that it's not really necessary. She is not an advocate for it. But of course, everyone has it's own diagnosis, ultimately they should be looking at your situation. Good luck.
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Hi momallthetime and everyone!
How is your daughter doing? I do hope well And you? How are you holding up?
Have been away from the thread for so long it's hopeless to try to catch up. Just popped in to say hello... Five years from diagnosis last month and still NED! One of the early neoadjuvant candidates. When I told a family friend oncologist I was doing chemo first and surgery later he told me to get another opinion.
There's been a lot of change even in the five years I first started. Slowly and steadily.
Best wishes to all
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Five years NED! Congrats, Ashla!!! I hope I'm as lucky as you.
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