TRIPLE POSITIVE GROUP
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good morning all been away from this thread for awhile. Started to skim but I want to read, too much has happened.
I was mostly on surgery threads.
I may be here asking questions soon,
I was just switched from tamoxifen to anastrozole on Thursday onc appt.
I started today. She quoted a June 2014 study, about its effectiveness even in peri menopausal. And less issues w stroke/clots. But more bone/joint issues.
I know from past readings here a lot of you have dealt with AI symptoms.
After I clean kitchen , which will be done slowly still have 2 drains ... I'll read.
Good to see you all here
Vivian
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Vivian, do you know which study your MO was talking about? Everything I've read still states only for post-menopausal women. I'd love to read it! I still have until Dec to decide on my hormone treatment options.
I start TPH on Sept 3rd. The nurse told me to take a B Vit but I can't remember if it was B6 or B12. Does anyone know which is better?
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Mommato - she was most likely telling you to take B6 to help with preventing neuropathy from the taxol. But I took both B6 and B12 and L-Glutimine during chemo - of course with my MO's blessing.
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mommato
I believe the study is SOFT. Published 6/2014
I take b6 for neuropathy
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I read that study. I thought she was talking about giving an AI without OS or ovary removal.
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Hi. I am new to this site. I am 43 year old female diagnosed with Stage IIB Invasive Ductal Carcinoma. Lymph nodes not thought to be involved per US, but tumor is large per MRI (8.4 cm). I am ER+/PR+/HER2+. I started on Perjeta, Herceptin, and Taxotere a couple weeks ago. I will have 3 more cycles of this before surgery. Has anyone had a similar treatment experience? I have seen some have been treated with carboplatin with these 3 drugs for 6 cycles. Wondering if there is research supporting one treatment regimen versus the other.
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chrissie - I have not seen Taxotere without either Cytoxan or Carboplatin given - you might ask your onc why it was omitted. I have seen 4 vs 6 cycles, but that is usually for a smaller mass. You are being treated neoadjuvently due to the addition of Perjeta, which is only currently FDA approved neoadjuvently for early stage breast cancer, although some onc have had success in getting insurance to pay for it after surgery too. Most of us who have had Taxotere with Carboplatin (and Herceptin) were treated adjuvently because Perjeta is so recently approved (Sept. 2013).
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Thanks SpecialK for the response. I am going to ask this week before my next infusion.
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So, I had my 3 month post Herceptin checkup with my onc this week. He said everything looks great. So, can anyone tell me why I am terrified to get rid of my wigs? They are just sitting on a dresser in an extra BR. I keep thinking that as soon as I toss them out..... Reoccurrence. Am I just paranoid or what?? Anyone else hanging on to theirs?
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gigi - I'll go you one better, not only do I have my wigs, I still have my port. I finished Herceptin in January of 2012, lol!
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GiGi and Special, you guys crack me up. I've been slowing cleaning out my enormous walk-in closet that is so full of crap, I can barely walk in it (I'm a closet and cupboard hoarder.) I found the wigs yesterday, and just like you guys, I kind of tucked them back on the shelf. Emotionally I had a hard time getting rid of the port too.
The mind, one strange, strange place! Tee hee!
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Still have my wig, scarfs, hat's. I just can't seem to toss them. Got my port out Asap.0 -
I had my port out a month after finishing H, but I still have the wigs. I actually liked mine. Probably because they were better than my real hair. I'll hang onto them as I still may need them if I keep losing hair from the AI's
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bren - you and me both - about 30% of what came back after chemo is now gone!
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Special, you still have your port after all your surgeries? My PS said I can't have the reduction on my left breast until my port comes out. That means I'll be lopsided for about 8 months.
I'm not done with chemo yet, but I don't plan to get rid of my wigs or scarves either. No sense jinxing myself!
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I have my cancer tub on the shelf. It has my wigs, camisoles, little pillows, drain holders, etc. Got it all. I will probably never get rid of it. I haven't noticed my hair shedding on the AI, but I have felt that it seems not as thick and it isn't holding curl well again. I HATE that.
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it kind of worries me, cause both my onc and my bs said they would schedule to get my port out, months ago. neither has. im just about afraid to ask. a year ago, my cholesterol was high normal, my endocrinologist said dont worry about it. try to eat right and exercise, it will be fine. ok, now this one doctor who is doing a study im part of, for survivorship and metabolic syndrome of women who've been treated for women's cancers, told me it was now 478. thats so effing wrong! i am so mad! i have been more active this year, than i was last year! and my good cholesterol was great! now, not at all. i can only blame femara.
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chrissie29 I had a big tumor, no nodes too. Perjeta wasn't approved yet. I tried to get into a study but they changed the perimeters and you had to be node positive so I was out. It's a really good treatment. I had my chemo after surgery. Things change so much. I will be 4 years at the end of this month (since surgery, cancer removed). So Taxotere with Perjeta might have been tested and work and certainly be less toxic than the combo chemos many of us had. I would ask your onc about this. Your tumor might even be smaller than they think too. I was told 7cm before surgery. Ended up total of 6.5cm but only 5.5cm was invasive, rest DCIS. You might have a similar situation. But it doesn't really mater because you'd get the same treatment.
Gigi I still have my wig and my favorite scarves. I've scared myself a few times with the wig. I keep it in a shoe box with my out-of-season shoes. When I open the box it appears to be a dead animal.
I had my port for a total of 2 years before I had it removed.Kathec is probably is the Femara. It can happen
My hair might be shedding more on Exemestane. It seems like there is more hair on the floor in my bathroom but I have such thick hair I can't say for sure. I do know certain seasons I shed more.
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momma - I kept my port at the request of my MO, he wanted me to keep it until the first couple of post-Herceptin years had passed. He recently said I could remove it but it was placed during my BMX without an external incision, so I have no scar. It is a subclavian port so up close to the hollow of my throat. If it was removed I would have a scar that is visible in virtually any neckline. I really don't want that, so I have not removed it. I go every six weeks to have it flushed - I like being on the radar at the onc's office - the nurses all know me, so when I need something I have no problems.
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Happy end of summer all!
re: port- I had my port out ASAP- 2 days after my last Herceptin. I hated my port. My thinking: If God forbid I need one again, they can put a new one in. That will be the least of my problems.
I donated all hats and scarves to the local cancer support center. I still have my wig tucked away. I really liked how it looked- it was better than my hair. Just can't seem to let it go- just in case perhaps.
My hair now is thicker than it ever was- I'm 1.5 years PFC. My hair was always fine and thin so I'm enjoying it though I know it will probably revert back to normal. I'm 49and I'm on tamoxifen. I had my FSH tested and it's 35 - perimenopausal. Estradiol level is undetected- so none. So I guess I'll stay on Tamox a bit longer till they decide I'm post-menopausal.
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Got a question for anyone might be stupid But I don't know. When your Post menopausal does it stop the hot flashes ? I hated Winters but now I can't wait for it. I sweat ALOT specially in the summer the hot flashes seem to subside in the winter. Come on winter get here already!!! Lol0 -
ang7894 all these ESD (estrogen sucking drugs) and EBD (estrogen blocking drug) have SE of hot flashes. Not everyone gets them. Some not as bad as others. My hot flashes have never been bad even when tossed into chemopause. I never got hot to the point where I was sweaty and drenched.
I do hear some women say that there hot flashes were worse on Tamoxifen than one of the ESDs
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I had lots of hot flashes, but they happlily stopped when I was post menopausal. The relief lasted about one year till my bc dx. Now, chemo has brought them back. My mom and aunt, both in there 70's, tell me they get very annoying night sweats. I don't know if this is hormone related or something else.
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mine were awful on tamoxifen. Drenching during the day, hot at night. At least 2-3 times per hour. On arimidex, that is the one thing that is better. I still have a lot of hot flashes, but they are much milder. Only every few hours does one seem pretty bad.
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I'm so peeved, because I cruised through menopause before and during this BC diagnosis. I'd say I was about 11 months into no period when I got the call saying I have IDC. I had never had a hot flash, didn't have any during chemo, none during radiation, and then the AI hit. Mine aren't bad, I'd say definitely mild, and so are my night sweats, but I never feel very clean. And they happen so often. Maybe at least one every hour. They don't last, and I only "perspire" but they are making me peeved! Sux. BC sux!
Oh well, I'm alive, and I've lost 21 lbs on Weight Watchers :-)
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Thats great, Pbrain! Good for you, you are inspiring me to try to lose those 15, i dont need em. Did you also increase your activity?
i was a lucky woman, my menopause was a breeze, my friend calls them power surges! and i guess i was lucky, too, the A.I.s havent given them to me too awfully bad.
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Pbrain, congrats on losing 21 lbs! That's fantastic!
I've gained 10 lbs since starting chemo! I'm hoping to do some exercising now that the kids are back in school. I'm pretty sure I've entered chemo pause. It's been 5 weeks since my last period. So far I've only had some warm flushes during the day and night. I really hope it doesn't get worse.
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Maybe chemo 6 with 20% reduction tomorrow, or maybe finished, will decide when I see MO an hour before tx.
Talked to the NP today, she said my levels are good and I should get the green light for tx, however my GP had also ordered a TSH because I have hypothyroidism and I was due for bloodwork. My thyroid levels were low. I have been on the same dose of synthyroid since my dx 27 years ago, this is the first time my levels have been low. I am guessing chemo has messed with this. Anyone else have experience with this?
Also days 4-9, my bad days, I experience low sodium levels, which I'm told is not a common side effect. It bounces back later in the cycle and actually goes to the higher side. Dr. GOOGLE tells me that low thyroid can cause low sodium, so my question for the MO tomorrow will be does he think the two are related and would skipping the final dose due to thyroid/sodium issues be wise. Does anyone here have an opinion on this?
Thanks so much to everyone who has been so much help to me throughout this. I admire all you ladies who are past the drama of chemo but stay on these threads to help us newbies.
My MO appears to be a religious man. At my first appointment he was asking me about my job with special needs kids. He told me he could see that I was a good person and I was surrounded by angels who would help me through chemo. An unusal thing for a doctor to say, but reassuring none-the-less. What I didn't know at that time was that my angels would be the wonderful ladies of this forum!
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Thank you, so much! I checked and this confirms 3 written reviews i read online.
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