TRIPLE POSITIVE GROUP
Comments
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Omaz I also think the few of us that are node negative but with larger tumors are somewhat of an enigma for HER2+. I mean I feel like a real freak considering my tumor, including the DCIS part, was 6.5cm but no nodes. There are some of us with grade 2 tumors and HER2+. Not sure how this figures in either.
I will admit I mostly scanned the article. I will be printing it out tomorrow and reading more. Thanks for posting.
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I haven't been on here in a while, takes forever to catch up. Thanks for the link OMAZ, I'm printing it out now to read. I've been very lucky with my onc, he recognizes the seriousness of being IIIA, but doesn't make it sound like I'm on my last legs, he's very positive and concerned. I'm having a lot of pain still from the AI's, so he sees me every three months, or less. Finished herceptin in May!!!!! I had hoped that some of my pain was coming from that, but no such luck.
LAGO - thanks for the link on the LympheDiva Seconds, I've been to their site several times and had never seen that page.
I had an ECHO before I started chemo/herceptin and then one after I finished the Taxotere/Carboplatin - it didn't show any difference in my EF so my onc didn't order another one, he felt if the Herceptin hadn't caused damage by that time, I was in the clear.
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Geewhiz....
seriously... yes, some need some work on their bedside manner. My onc is awesome.... she will not take doom and gloom, and she always points out the positive. Pejkug and Christean - just a thought, but I have a copper IUD... no hormones. I love it. It's good for 10 years, went in quickly, effective immediately, covered by insurance. I had mine before the BC diagnosis so not sure if they would do it now, but don't see why not... might be worth looking into if you are interested.
Yes, I think the stats are better for ER+ Her2+. We had the first from my chemo board recur, and she was ER- Her2+.
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I'm just now catching up on all the posts after being out of town, it's a lot of catching up!
Pejkug3: I have also read that Tamoxifin can cause an increase in fertility and my DH and I have 6 children and I had all 6 by c-section so kids at this point are out of the question - no to mention that fact that I'm also 44. I had been on Depo-Prevera shots for a number of years before diagnosis, but obviously after diagnosis I could no longer take them for birth control. I talked to my OB about having my tubes tied because my husband (notice I didn't say DH this time) would not even think about "getting fixed" so I thought it was all up to me. My OB was but a crazy man when I asked him about it, he said "getting your tubes tied is a surgery and now that you have cancer, I won't even consider doing it" He said "how do you think your husband would feel if you died from having a surgery when he should just "man up" and do the procedure." He said "I've done it and it's so minor compaired to what you'd have to go thru." Well, I went home and, even though I didn't disclose the "man up" part, told my husband that since my cancer diagnosis that he wouldn't even consider the surgery. We were in the same situation at the end of last year in that all out-of-pocket was taken care of, so, very begrudgingly, my husband went to his doctor for the procedure on Dec. 23. I took him, he was back there all of about 15 min. came out, went shopping for Christmas, out to lunch, etc. He did get a little sore that afternoon/evening but that's all. He was pretty much fine after that - took him a couple of months to get over the fact that his manhood was not damaged and he's fine about it now. It's all a process and sometimes it's hard to work through, but it can be done.
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Men can be so funny/squeamish about anything that deals with their penis, scrotum or anus. I still can't understand why my husband thinks it's hysterical everytime he sees some guy get it in the crotch in a movie. What is that all about?
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omaz - having ovaries removed does not necessarily mean one will take an AI. I had mine removed in Feb. I was already on Tamox. My onc has me continuing with the Tamox. She said that premeno women can ONLY take Tamox, but postmeno women can actually take either. Staying on the Tamox (which I am tolerating well) keeps AI's in my arsenal for later if needed too.
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also, regarding doom and gloom oncs - that sucks. My onc is amazing - she calms MY doom and gloom whenever I let it show, and has gone so far as to tell me "we consider you cured." CURED. Maybe it's not true, but I like hearing it, and I like trying to feel that way.
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My BS said the last time I saw him that I was approaching my 1 year NED. No one says cured. Even when I asked my on when I first met her "how do we know this treatment will work" she said "we don't". Neither are doom and gloom but both say it like it is. This is good for me but not good for others. Basically I may be cured we just don't know.
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Christean,
That really stinks. I know what you mean about tx affecting the bedroom. Some men handle it better than others, and I think age has a lot to do with it.
Could you use condoms? I know, I know. But that way no one is getting cut up, injected with chemicals, etc etc.
During tx we used condoms (my husband gladly was snipped a few years ago)...we used them just to be safe so there wasn't any infection, and frankly I don't care what we're told about chemo leaving our bodies after 2-3 days...I didn't want him dipping into that toxic pool unprotected. (Sorry about the metaphor)
It's hard. I hope you come to some sort of peace with it soon. The surgery for men really isn't that big a deal (though they are big babies about it). My husband was out digging up our garden after his procedure and even admitted it wasn't bad....AFTERWARD.
Hugs to you sister.
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christean - I had a TAH/BSO at 45, and even though that is a bit older than you (and 10 years ago for me!) it was not really a big deal as far as getting used to it. I did go on HRT at a minimal dose, which you can't do, and I did it mainly for the flashes. Obviously, I stopped HRT the day of diagnosis. They did find a previously undiagnosed 3cm ovarian mass (surprise!) in the right ovary, but I had the surgery for numerous uterine fibroids. I had a cycle that lasted for 4 months and I have a normally low Hgb anyway! I think if you have regular bone scans, are diligent about your calcium and live a heart-healthy life you would be fine if that is the route you are considering.
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This is another abstract comparing the stats for the different BC subtypes: Link(type Parise Brown om the search box)
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Omaz,
Thanks for the links. The second one was easier to understand.
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sewingnut - I like that one too. There is a full article out there on the California data but it isn't free. I had access because I work for a University and it showed similar results as these two.0
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I had a chat with my MO today at Herceptin only appt. He actually said he would rather be Her2+ if he had to have BC. I thought it was an interesting comment. Did I understand table 4 of the first link when it said that ER/PR+/Her2+ did better?
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specialk, my bs had the same reaction when he told me i was her2+. he said, 'why are you worried? you get to take herceptin and you'll be fine.' that really bothered me at the time, but maybe he's right? i'm a week out on my first tx and right now, i'm not doing that well emotionally. physically, i'm fine, though. i can't really explain the feelings, but i hope what specialk's mo is telling the truth!0
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SpecialK - I think so
ER/PR+,Her2+ = ER+/PR+,Her2+; ER-/PR+,Her2+; ER+/PR-,Her2+ and I think the stats come from pre-herceptin days
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My BS called being HER2+ "the good news.."
Being ER+ "The bad news..."
Thanks Omaz for the links...
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Just filled my Femara scrip and was given the generic, which just became available since the patent on the name brand expired. The pharmacist told me that by law they have to prescribe the generic first, only can give the brand name if your doc appeals with support like, patient is allergic to fillers in the generic. I looked at the cost info (my co-pay is $3.00) and the generic is $529.00 for 30 days!!! Holy crap! Can you imagine what the name brand must cost! There have been some questions about people having more SE's when they switched from name brand to generic. I asked the pharmacist about that and she said that stems from the fillers - if you start on the generic you shouldn't have those problems, it is the switch that causes the problems. Sure hope so!!!
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http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=52&abstractID=40116 here is the abstract and chart..comparison of stats0
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Christean: I totally hear ya on the bedroom. It is awful and I feel so bad for my hubby but he is so wonderful about the whole thing. I am 34 and I am on lupron. It isn't too bad for me. I get a shot 1x month now and I have 1 bad/emotional day and just hot flashes other than that. My genetic testing came back with gene of unknown significance so i am treating it as a poss. I don't want to take any chances. I will be on lupron for 5yrs until I get my ovaries out/hysterectomy. It is such a scary and emotional decision. I have 3 kids and was hoping for 1 more when I was dx. So that made the decision. It still wasn't easy and I still struggle with it even though it is 5yrs down the road still.
You will make the decision that is right for you and your family. (((HUGS)))
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Yep, I'm going to make a voodoo doll for these knucklehead oncs. I am thinking that every ache is mets today. My arm is a little numb, my thigh is achey. Of course, I am 44 and just played a grueling competitive tennis match...and also ran in a local road race this weekend. But today, the possibility lingers.
I am also a national speaker in my field. And today, I got asked to speak in January 3013 at a huge symposium of my peers. It's a HUGE honor, and I hate to say...as I accepted, the thought of not being in a condition to speak in 18 months from now, ran through my mind for a split second. I hate this disease. Today it all got to me. Tomorrow, I won't give it any power : D0 -
geewhiz - hold tight to that promise to yourself about tomorrow! I will be rooting for success!
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Karebear76- Thanks for your words of advice. You will be on lupron for 5 years? Wow. Did you start Lupron before or after chemo? Do you take tamoxifen? Sorry I have so many ???'s.
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I'm interested in the Lupron. Why did you choose Lupron over Tamoxifen?
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I started lupron during chemo as my cycle went crazy and I bled for 4wks. The drs didn't like that so the shot was to stop it. I am also on tamoxifen for the next 5 yrs. Both are just to keep my ovaries surpressed and it is double insurance that I don't get preggo (NOT that I want to). I have only been on tamofen for 2 days so too soon to know about side effects. Plus I take it at night!!
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My dad gets Lupron for prostate cancer, 1 shot every 2-3 months, he gets hot flashes. How's that for weird? Thanks for the links, they look really interesting.
YaYa5 - you'll have days like that off and on for a while, they do get further apart, but it's a lot to take in. I didn't really break down until after I finished my chemo and radiation, then I kind of fell apart. My Onc said that your so busy during treatment, getting to the weekly/daily appointments, handling the side effects, trying to take care of the regular day to day duties, plus if you're still trying to work, that adds more - then when things slow down and your not running from appointment to appointment any more, it all hit me.
Linda
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Looking for the advice of everyone here-for the past several weeks I'm having a problem when I sleep with both of my hands going numb-I sleep on my side and it's always the side I'm sleeping on that goes numb. It's bad enough that it wakes me up and it's happening all the time now. I'm 10 weeks PFC and I never had any problems during chemo with neuropathy. Are other people having this issue when they sleep? Is this neuropathy? My next appt with the MO is not until 8/30...
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dragonfly - they don't stay asleep for long after you get up do they? Sounds more like circulation than neuropathy.
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SpecialK No, I wake up because of the numb/tingling feeling in my hand and roll over so that it alleviates the problem in that hand but it just happens again. Unfortunately, I can't sleep any other way except on my side-I've tried but I just end up on my side again. I've never had a problem like this before and it's been going on for several weeks now. I've been googling for info about numb hands during sleep/chemo and it keeps pointing me to peripheral neuropathy so I'm a little worried...of course my concern is that it could be the onset of neuropathy...will ask the MO in a few weeks when she returns from vacation but it's good to compare notes...0
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dragonfly - I started getting problems with my hands after I finished chemo. I can't remember exactly but it started about 2 months after I was done, maybe a little more. It was especially bad in my left hand, thumb, first and middle fingers. AT night it would help to use pillows to keep the wrist straight. It has nearly gone away now at 8 months pft.0
