TRIPLE POSITIVE GROUP
Comments
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Thanks camillegal but I really don't come even close to knowing what the MDs know. Lets be honest I am a designer by trade, training, education. Granted I was forced to attend BCU like most of the women here (BCU=Breast Cancer University)
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Lago don't fool u'rself there are lots of Drs. that can't answer what u do--so..........
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Welcome Janiepants and so sorry you have to join us. Was your initial Her2 information from your biopsy or from your lumpectomy path report? I don't know what to tell you, but what I can say is at the end of my treatment, I kept (and still do) worrying if I did enough. I'm still doing Herceptin and start on an aromatase inhibitor next week and then that will be it...yipes!
And thanks Ashla! My problem is I'm supposed to use this dinky allen wrench to put in these huge screws and it seems like I just can't get them in straight.
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Missed about 6 pages of posts and can't catch up - hope everyone is doing well. Had 4 month check with MO this week, and forgot to ask one of my usual check-up questions and know someone here will be up on the latest - my center/MO does not test for CYP2d6 and my MO has said the test is "unreliable." I know other MOs do give the test. Is that something MOST oncologists will do? Should I be asking PCP for it? No reason to think tamoxifen is not working, but obviously no one knows unless/until recurrence.
I've also been in a panic over hip pain. Bone scan and lower back MRI 7 months ago were fine, and an xray of hip this week was normal. Should this be investigated further? Was told that xray would be the place to start to see if there is anything that warrants further scans, but I'm not sure if I should be pushing for more or just chalk it up to too much exercise, or just an age realted ache and pain I wouldn't have freaked over in my pre-BC life.
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Shore I'm not on tamox but I too have read that the CYP2d6 is unreliable. As far as the bone pain, if its more than 1 month tell both your PCP and onc.
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Shore1, I asked my oncologist about the CYP2d6 test last time I saw him. He said there was a large study showing that women who metabolized poorly and women who metabolized well according to the test did absolutey the same on rate of cancer recurrence or progression. So he feels there is no reason to do the test. He said the test was developed here in Minnesota at the Mayo Clinic, and someone he knows is now working there alongside the doc who developed the test, and that she has hinted to him that they are going to come out with some new news about it - but for now, my onc thinks it's not worthwhile.
And hip pain - I have had some. Pain in the hip joint I attributed to arthritis, which I have in some other joints. But I had persistent pain in the top of the hip bone by my waist on one side. Onc sent me for xrays and they showed nothing at all. Not even arthritic changes in the hip joint...so that was confusing! But the pain in the top of the hip bone has gone away now. Maybe caused by the tamoxifen? I started tamoxifen on April 1.0 -
Shore: I understand your concern and fear about the hip pain but I suspect it's ok. Ever since chemo I've had chronic pain in my lower back, right hip and right shoulder. I had a number of xrays, CTs and MRI's last year and they were all fine-just showed degenerative disc disease and a problem in the AC joint of my shoulder. Funny thing is I never had any pain before treatment. I also saw a Rheumatologist during the workup and he told me that chemo has a funny way of accelerating joint problems and making degenerative issues worse than they would normally be at this age (I'm 43 now). My MO agrees with this theory and says he sees it all the time. I was blaming the joint pain on Tamoxifen and chemical menopause but now my menopause has ended and I honestly don't think it's the Tamoxifen. Sure doesn't help with the fear though...Hope that all is well with you.
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Shore, I'm with Dragonfly. Chemist sure made my degeneratuve joint disease much worse. Also my bone loss is worse. Some days my pain level is equal to when I go off my anti infamatories. Like a 10. Or like the pain from nuelastin shots just to give you an idea. But, since every tx has SEs, I will stick with pain, rather than damage I don't know"! LOL. Sorry you have to suffer pain, but if the tests they ran didn't show anything, I think you should let it go and try to find out hoe to handle what you have to deal with. I take Tramodol as my pain control. It does help. Much love.
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To you rocking chair people, Im thinking make it easy...Cracker Barrel, a hundred bucks. Go have some yummy pancakes and throw your chair in the car! Instant porch furniture.
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I love putting things together. Fly me out and I'll do it. I also can put together kids toys
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My favorite is stuff from Ikea with weird diagrams, excess parts, bizarre item names, and directions in Swedish! Somehow my DD is really good at putting it together! It seems to be easier if one is drinking...
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Har! I'm heading to Cracker Barrel!
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Lol, those chairs outside Cracker Barrel are very comfortable!
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MOON AND SHORE What is being done for u for u'r degenerative disc stuff---Are u in PT? or anything?
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Dragonfly, Lago, Patin Moon - thank you. Seems general aches etc after chemo are pretty common, and some of it probably has to do with being more aware of things we might have once brushed off. Cami - I do have degnernative dics in lumbar spine, but not so bad if I keep moving moving. No Pt or anything yet, and I find that as long as I am walking and doing yoga, I feel better. I also make sure I get up from my desk every 20 minutes or so and take a walk around the office.
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An exciting week here. Colonoscopy today. Woohoo. Surgeon wants that done before I get my gall bladder out to be sure there are no surprises. I pray that he doesn't really think there will be any surprises - just yay for being 50.
Tomorrow I am back to the cardiologist. My EF dropped again, this time from 63% to 54%. Last time they made me stop the Herceptin. I still have 8 more to go.
Shore, at my request I had the CYP2d6 test. It is not the test so much that is unreliable - it's what to do with the results. My take on it was that if I was a poor metabolizer I would consider other options to shut down my estrogen production. Being a normal metabolizer doesn't really guarantee anything. And be a super metabolizer means what? Perhaps the drug is too efficient and we would need more? No one really knows. Still, something about being total I am a normal metabolizer is comforting. I would hate to be on a drug for 10 years that my body can't process. Of course, this is my complete non-MD take on things so take it for what it is worth.
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Shore thanks for the info.
Vbllmom good Luck with the colonoscopy or as I say to the Drs. the up r A** test. And I like u'r take on the drugs.
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vball - hope all goes well with your colonoscopy - my routine one at 50 was a piece of cake!
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vball= had my first ever colonoscopy at age 73, same as Special K a piece of cake,however the prep was not fun..
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Eileen the prep is horrible the worst part, at least u'r home. I remember my sister said to me to bring the phone, abook and water in the bathroom and just stay there--I lived alone so it was better--and I did hahahaha
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Cami, my bone loss is twice as bad as last year, but I am still just this side of osteoporosis. They don't treat til I am over that line. I was to have knee replacements, as I have been needing them for years, but couldn't bring myself go do that. Ironically, I was making arrangements fit the surgery, when I had to do bmx instead, then chemo. Had two failed implants in my left breast. Stuck with a half filled TE in my right. Will be calling PS today for a check. He told me he wouldn't be in a rush for surgery. And my ortho will not even think of it for a long time. As he said, you had a implant fail already. Imagine if it was your knee implant we had to remove. Cringe. Will probably try to convince PS to fill te and exchange. If that goes well, will try for left te and exchange. Then, maybe ortho will chance it. Maybe I was just too run down to be able to recover enough. Well, sorry, TMI! LOL
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Vballmom- good luck.
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Oops, vbalmom good luck on colonoscopy.
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OK so tomorrow is my first 3 mo check up and I guess it could not have come at a better time under my arm pit has been hurting all week where my surgery was and Well All of a sudden my bad boob has a rash like kind of tender( hurts) around the out side of my bad breast I don't know what to think. I thought it was my bra as I just started to wear one again for about a month now I was thinking maybe to thight? So I am once again doing the no bra for the last few days just to see. Omg if it's not one thing its another.
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Ang it's good u'r going for u'r check up than u don't guess anymore--good luck with that.
Oh moon geeze u've been thru so much crap and then knees and back it's like on going too, I know. I just feel a little lost cuz in 3 months time my back went from moderate to severe, and of course I feel severe LOL very dramatic person. But I just want to find out who else has this degenerative back thing too and mine is like u gals 2 bottom discs and the bottom of the vertabrae. I've been doing excercises for my LE and others but I don't seem to get the high of endorphins and energy that everyone else seems to get--I get loads of pain--and I just wondered how others have been treated with this. And I know cuz I'm always reading this sight how bad things have been for u.
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camillegal - I had degenerated discs at L4&5 prior to BC. Femara and Arimidex have made it more painful and on my last PET scan they saw increased degeneration, but no avid uptake significant of malignancy. I am not sure there is much in the way of treatment, aside from prescription pain meds and maybe massage, Celebrex, or regular NSAID/Tylenol/Aspirin. I get uncomfortable if I sit too long - and that applies to my whole body, not just my lower back, so I keep moving. I am also in pain before I get out of bed - again, body-wide - and that improves with movement. I don't love exercise but I feel like stregthening the core will help support the spinal structure, and maybe I will have less pain, so I do it. Endorphins have not found me either, lol!
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SpecialK Thank you--I'm glad u don't feel the endorphins too I thought I was the only one.LOL I feel like a failure cuz I don't have that feeling, I just feel more pain and even when I walk, after about 1 minute the pain starts and the further I walk I start bending over trying not to hurt but by the time I'm done I'm almost in tears from the pain--so in my mind I'm thinking where are the good feelings hahahaha
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Miss VBall.... kinda curious on your EF percentage -- is that from the MUGA test... I had one before my first chemo 3 weeks ago and my percentage was 50% and it said....
First-pass technique was used to evaluate right ventricular ejection fraction. On average this was estimated at 50%. This is normal.
At equilibrium, multigated analysis was used to evaluate left ventricular ejection fraction. This was measured at between 61 and 66%.Is that kinda the same thing??
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camillegal - I exercise only because I know it is supposed to be good for me, but I don't like it at all, and I am not really comfortable while doing it, lol! I am sorry that you not only do you not get endorphins, you hurt! That sucks! We will have to add it to the giant list of things that suck, right?
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SpecialK- what the heck are endorphins? Never heard of them..
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