TRIPLE POSITIVE GROUP
Comments
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Hey Dragonfly, sorry to hear about your shoulder. Mine has been painful to! I wake up 2-3 times a night and in the AM all of my fingers and forearm are swollen and stiff on the right side. I saw an LE Specialist and she ruled out LE and cording, my upper arms are the same size but my wrists are not. I wanted to ask is the shoulder that is giving you trouble the same side as your port? I had recon 3 weeks ago and the swelling is much worse but the pain has been since ME/ port insertion, so I am wondering if that is the culprit.
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Nmoss No, my shoulder pain is on the lumpectomy/SNB/radiation side. I never had any swelling however-just severe pain in my upper arm and shoulder. It became painful to move my arm in certain ways i.e. reaching backwards or straight up and also caused shooting pain if I pushed or turned anything with my hand (for ex. to open a heavy door or driving with my manual gearshift). From what I'm reading, "frozen shoulder" can occur after any kind of chest/breast surgery-I wonder if the port could do the same thing-it causes a fair amount of trauma to the area...0
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Hi Dragonfly the port has been a headache since day 1. The area has always been tender and swollen. I amounting the days until March 26!
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Dear sisters, thought I could post this news and see what you think about it. Is the cost the main reason that our onc prescribe tamoxifen, instead of Femara? I thought Femara is for women after menopause...
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meglove aromatase inhibitors have been reported to be a bit better than tamoxifen for quite some time. They are for post menopausal women only. In some cases the ovaries can be removed or surpressed allowing for an aromatase inhibitor to be prescribed. The first AI to go generic was Arimidex (Anastrozole last fall). I think Femera went generic this year. It seems from what I've seen that aromatase inhibitors are the first choice of oncs for post meno women but there are other factors to consider. If you have a history of blood clots, serious osteoporosis, etc you onc might feel that Tamoxifen is better for his/her patient than an aromatase inhibitor.
Granted that article is the first I've seen with such a large percentage. Do they mean 20% compared to Tamoxifen? That's a higher number than I've seen in the past but this study was paid for by the company that makes Femera. Granted I do think it's better but not sure if those high numbers can be repeated.
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Lago: I'm on Anastazole and am borderline osteopenia so I'm also on Boniva....kinda sucks but it is what it is. Hoping no problems from the Boniva. Just passed t he one month mark for the Anastazole and no SEs yet, but I'm sure they are to come.
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Arlene I've been on Anastrozole since March 1st. I had no SE till 3 months. I have the stiff fingers and toes in the morning. Stiff legs too but I'm not sure if its as bad now. I've been of Herceptin (Sept 6th was the last) but had fat transfer. My PS took the fat from my thighs but I started bruising behind my knees and now my ankles. The hot flashes stopped after chemo but I think I had some the last 2 nights. Mild but I did wake up and kick off the blankets. I'm hoping it was just something I ate. Still if they are hot flashes they are pretty minor.
I have ostepenia but not too bad. Of course we are watching given the family history and I'm a small white chick. I do think the walking, extra calcium and D3 has helped.
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What is a fat transfer? I am on loads of Calcium and been on D for a few years now since prior to the bc diagnosis, it was determined that I was extremely deficient in D.
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Fat transfer is part of my reconstruction. My PS takes fat from one part of my body and puts it back in my breast area to soften the look and reduce ripples of the implants. The donor sites have the fat Lipo-ed out. It's not full lipo though. It's not like the donor sites are smaller now like full lipo.
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kay1963 - automatic computation of the EF occurs when the tech/cardiologist does the measurement during the echo, so you are correct about how the computation is done, but it is dependent on the skill of the operator.
My MO put me on Femara and said at the time he preferred it because of the slight edge on performance.
lago - since you are osteopenic (me too, also a small white chick, although less small than I used to be!) did you discuss get a prophy bone drug with your MO? Mine seems to be content with just watching for now. I started Femara in August.
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My onc said he would start me on tamoxifin just in case I wasn't completely thru menopause, then switch in a few years. But wasn't there a study published here that said patients have less recurrance if they take one and then the other?
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i have been on tamox 2 years and my onc wants to do a hormonal panel in 6 months and switch to an ai. I am frankly scared. I need to study up on it all.
Lago, Arent you getting nips or something soon? I hope it goes well, keep us posted!! Congrats to you!!0 -
Wendy-I read the same study that said it was best to do a couple years of tamoxifen and then AI. Not sure where I saw it though. I am on Tamoxifen...no period since January (mastectomy was February). At my upcoming appoinment with my PCP, my onc told me to have him run a hormone panel to see if I am through menopause or where I stand and he will evaluate.
Lago, I checked out your pix. Looking great! I can't wait until my exchange. 12 days! Seeing all the docs tomorrow and the pcp on the 3rd, so hopefully I am covered. Infectious disease doc has me washing with hibiclenz and taking some kind of nasal antibiotic starting this Friday to make sure I stay germ free this time. Hope it works!
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SpecialK my onc doesn't treat osteopenia. I am being watched but won't get any treatment unless really start to lose bone density fast. So far I'm still slightly osteopenic. When my onc had me tested she put me on calcium and recommended walking at least 30 minutes a day. I was already doing that. I also increase my D a bit more too.
geewhiz I got my nips 2.5 weeks ago. Still look like Franken nipples. For some reason the stitches are black. Not sure if they will be removed this Wednesday. Swelling is almost gone and the bruising so much better. I also got fat transer and a revision/pocket work to lefty too.
Fluffqueen I did take some updated photos yesterday but I've been so busy with working freelance, applying to jobs and PT that I haven't had the chance to post them. I might get they up tomorrow. Might only we working 1/2 a day.
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lago - hope you don't mind but I just advised someone who posted about nails to PM you. On the osteopenia front I did discuss it briefly with my MO when I got the Femara script. Mine will treat it because they are an infusion center and can do Reclast there. My PCP is the military base and they can't. I had reflux surgery in '95 so I can't take Actonel or Boniva - I tried a few years ago and they caused severe heartburn and I don't want to complicate that situation. My bone density has remained stable, but my last scan was just over a year ago, when I had that fateful mammo/US. They want me to have another in a year. I am also taking calcium and extra D. Just got my new LE sleeves today (first set turned my hands purple!) so hopefully I can start exercising again this week.
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Mine bone scan showed a .1% decrease (notice the decimal point before the 1) since last year. Not only was I on Anastrozole for 6 months but also did chemo and went into chemo-pause in that year. That's a pretty small decrease. I'm glad they are holding off on the meds. I don't need any more SE.
My LE arm is swollen up again. Don't know if it's surgery but I think it's from my PT. I actually fired her this morning. I contacted my old LE PT and told her if she couldn't fit me into her schedule I was going to be treated elsewhere. She actually had openings. She would have treated me to start but was totally booked and didn't want me to wait. I wish I had.
Very annoying when these folks can't fit your to a sleeve properly. The first place I went to gave me sleeves that were too short, silicone tops that I don't need for my skinny arms (that actually irritate me) and even the fingers of the glove are too short. I don't really need a glove though so next time I'm going with a gauntlet.
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SpecialK: My new onc here in Melbourne is going to watch me and if she sees any signs of my borderline osteopenia changing to Osteo...she'll give me reclast. Anyone have any opinions on the reclast? I hate taking the Boniva.
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lago - I had issues with PT also - I was doing great with the therapist who was gently massaging, then she was out for a week and I ended up with one (all are LE certified) who was more aggressive and wanted to stretch the cording. I was back to square one with the pain! The sleeve fitter is a certified orthotist and the error was not hers (at least I don't think so) but the particular fabric was just too compressive and/or tightly woven. We stayed with the same measurements, which I think are good - complete coverage from the underarm, overlap at the wrist, but a different manufacturer. Sleeves are so much easier to put on and even though the compression level is the same they just feel better. I had them on for a while but no purple hands. I have bi-lat sleeves and guantlets. Maybe your swelling is a combination of the PT and surgery together?
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SpecialK so far I don't have to wear one on my right side except for flying. I have felt heaviness at times but no swelling. I do have sleeves for both arms. If I start lifting again I may wear on my right too.0
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lago - sorry to hear about the LE. Hope it clears up soon.0
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lago - my plan is left one for lifting, flying or doing something strenuous (whatever that might be!) and right one I have to try to get used to wearing regularly, but at least for any exercise, as well as lifting and flying. Just reading over what I wrote makes me glad I am not having to worry about the wig and prosthetic anymore! I sure hope your swelling calms down ASAP!
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Hi, Triple Ps, I had my head clipped and got a wig Friday. It's okay. Wore a hat with a scarf band around it and a headband to the pumpkin patch with the kids--and rocked some big hoop earrings! Also not so bad. Today I got taken off Taxotere and Cytoxan and put on Navelbine instead, because of my allergic reaction to Taxotere. I am Day 1 (second treatment) and it is easier so far than Day 1 on TC. Anyone else have Navelbine?? Heard of it?
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LAGO -- Dear Lord, I apologize I didnt realize your nips were over 2 weeks ago. I had fatgrafting an exchange to a smaller implant on the 7th...been a bit out of it I guess. I am jealous...cant wait to get nips!
I was just reading on another thread here...about her2 and recurrence. Someone posted that survival is 30% for stage 3 her2+. I googled a study, found a poorly designed Korean one that seemed to indicate this was the case...actually gave the stat as 28%. Anybody heard otherwise? This certainly was not what my onc told me!!
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geewhiz - That doesn't sound right. Must have been before herceptin, yes?0
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Exchange in 9 days! Knock on wood. I am paranoid he will get in there and something will be wrong. Got my short little hairs colored today. Soooooo much better. Even tho it is unstylable yet, I feel more like myself.
Lago and specialk....hope your arms are doing well. I never know how much is too much when working out. Every time i do a plank in yoga with most of my weight on my arms, i wonder if I am just asking for trouble.
I am trying to decide if I want him to lipo a small pad of fat under my left armpit that isnt on the right. He is happy to do it, but says it will take longer to heal and be sore a lot longer. Im wondering if it is worth it. On the other hand, Ive come this far, might as well go for it.0 -
Good Luck FluffQueen!
And Omaz, the study was from 2008 and patients were not treated with herceptin. But herceptin has a lower than realized rate of effectiveness...so, its still not good.
I am going to look into it tomorrow. My psyche needs the clarification!!
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Geewhiz, two out of the three once I interviewed called herceptin A game changer on the treatment front.
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Geewhiz - I ran some scenarios through lifemath.net and didn't get those stats. Have you seen that website? Note, it's mortality not recurrence though, I think recurrence usually runs a little higher. also it doesn't include herceptin treatment.0
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Yes, thank you very much Omaz! This is one of the rare times that lifemath actually looks good to me, lol!
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