TRIPLE POSITIVE GROUP
Comments
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Kayb my ridges are vertical not horizontal.0
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lago - I only had problems with one fingernail and one toenail. Toenail was pinky on the right, it just fell off and grew back almost immediately. Fingernail was wedding ring finger. More problematic - it lifted all the way back. After a few months PFC it had continued to lift as it grew out. The dermatologist cut if completely off, and I mean completely off, up to the quick. My fingertip on the top looked like a newborn mouse. They cultured the nail and found both fungus and bacteria - no surprise. I was prescribed Xolegel and Ciclopirox, which I put on daily and then covered it with a bandaid. It did grow out with no problems - but it took about 6 months to reach the end of the fingertip. I am sorry you are still dealing with nail issues - it is such a PITA.
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kayb - Hate being scared (((hugs))). Maybe in the mean time get your ears checked to make sure it isn't an inner ear balance problem.0
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Kayb it is good that your onc is scanning you but if s/he is stating "probably negative" it's a good sign. I have read that the typical first symptom of brain mets is headache.
I think you are just getting clumsy.
Seriously as we get older our balance changes. I'm finding I can't wear some of the higher heels I used to wear for a long time anymore… and I'm not old yet. Some women have strange issues from lack of estrogen. Not sure if you are doing an ESD or Tamoxifen. 0 -
I also have the 'chemo ridges' on my finger nails and lost several toe nails last year in tx. Fortunately one was the large toe and it was replaced with a plastic one. It is just now almost grown in.
A friend of mine had Tamox a dozen years ago and ended up with cataracts in both eyes. She said she has better vision after cataract surgery. But it is a well known side effect.
I also had some balance issues and vertigo (never had that before) over the last year. Never related it to the cancer or tx. I just really worked on doing balance exercises and it seemed to help. Stepping exercises and yoga worked wonders. Also, while I am walking, I walk the curb like a balance beam. I am not taking an ESD.
Kayb- relax. I had a brain MRI when I did not wake up from being vented. When my husband pointed out that I was getting 20mg of Ativan an hour, they finally figured it out. And another time when they were trying to find the root of an infection. It is no big deal if you are not claustrophobic, if so ask for a small amount of Ativan! Good luck, hoping for the best!
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I agree with asking for something to relax you during the MRI if it is a "closed" machine. I had my first and only ever panic attack while having a brain MRI for headaches five years ago.
I laid there and thought, "So this is what a panic attack feels like." Then I tried to take deep breaths and be calm. No one knew on the outside how freaked out I was on the inside. But when they pulled me out, I was drenched in greasy sweat....and shaking. But I did it sans drugs.
If I ever have another...you can bet I'm taking valium first!
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kay - i had 2 breast MRI's when i was first diagnosed. I had my whole body in the tube for almost 1hr because i had to do a biopsy the second time. TAKE AN ANTIVAN - honestly, i had such a bad panic attack that the tech had to keep her hand on my back (she reached in) to keep me from freaking out.
BUT it was a unusally long one - I think with a brain mri it would be much shorter
i think this is what convinced me to do the bmx - i never want to do a wire guided mri biopsy again
AND the dizziness can be alot of things - we have so much crap in our bodies, could even be eye related
good luck and praying for NADA
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moni731 - I read about the risk of cataracts from Tamoxifen. My cancer was highly ER+ 98% and so Tamoxifen is on the list for me after rads finish in late July. That is really scary now because I already have these fast appearing cataracts in both eyes most likely caused by the IV dex premed given before each of my weekly Taxol/Herceptin infusions for the past 11 weeks.
I am only just 47yrs, working fulltime at a research computer job, studying part time for a university degree. I can't afford to not be able to see a screen, read a patient file quickly, read acadenic papers for research or drive at night. I can't afford to go nearly blind before it gets fixed, which is what they seem to expect you to do here.
I'm due at my rads planning session next Tuesday. Should be an interesting conversation with the RO since I was diagnosed with pneumonitis last week caused by the Taxol. Since rads can also cause pneumonitis, and she has already advised me that it was more likely for me due to the high angles she is going to have to use which will hit/damage more than the usual lung, I now have to worry about getting it again from the rads and that increases the likelihood of permanent lung damage.
I've gone from a fit, young looking 46yr old to THIS (bald, puffy, vision impaired and can't walk even up a flight of stairs without getting breathless) in 6 months :-/
Adjuvant treatment, which I describe to non-medical people as an "insurance policy" against the cancer coming back has been very "expensive" indeed for me so far...
Jenn0 -
Jenn I know it's hard to believe you will ever be fit again but it will happen. I was in shock week 5 PFC that a lot of the stiffness went away. Even more after Herceptin ended. I'm not saying that I still don't have stiffness (ESD) but nothing like chemo. Also I find if I move the stiffnes goes away. By my 10th squat I'm fine… and can do 50 more. The puffy goes away too0
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Jenn, I can certainly understand how you feel. I had fast growing cataract's that showed up in my 50's and had to have the surgery. My vision was so bad that I couldn't see the big number at the top of the chart! I was freaked and it was years before I had chemo. What I do want to tell you is that it is a great surgery. They only do one eye at a time. They have you in this twilite sleep and you are not nervous at all.
Just wanted you to know my experience with this. It sounds terrible but it was very easy for me.
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I too was scared of the MRI but it was just my breasts. My head didn't seem to be all the way in… or maybe because I was face down looking at the techs in the booth it didn't scare me as much.
Bring those foam ear plugs! My place provided them but you want to be prepared. Its noisy.
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Thanks everyone for your comments. I just really needed to tell "someone". I've shared a lot of my progress with many of my friends and colleagues but this cataract thing is long lasting and I won't be sharing it with many people, particularly work colleagues.
I was so prepared to throw everything that made statistical sense at this cancer and now it's very frustrating to have to start guessing about whether to have the rads or take the Tamoxifen when I already have some of the serious long term SEs that they can cause. That takes the published cost vs benefit ratios out of the picture for me and takes me into the unknown in the statistics - and I'm such a statistics girl :-)
Ah well, it's another day here in Australia and today is the day that I am considering my first day after finishing chemo. It is now a week and a day past my last weekly Taxol dose!
I hope everyone else has had a good Friday and that your SEs have been minimal, your scans easier than imagined and your tasks have all been completed easily for the day.
Jenn0 -
Jenn...I have to agree...you are getting hit hard with the side effects.
The pneumonitis being re-aggravated by radiation is especially concerning. How likely is it that that could result in permanent damage? At least it sounds like te cataracts are fixable, right? I feel for you - it is always so hard to weigh treatment risks/quality of life issues vs cancer recurrence risks! 0 -
Gals - hormone therapy question. I'm still doing chemo, period possibly has stopped (chemopause). If I am indeed going into chemopause, will they start me on an AI instead of Tamoxifen? Pardon the newbieness of this question...I've put off doing much research into hormone therapy b/c overwhelmed with chemo.
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DT - I think they would start you with tamoxifen to make sure your ovaries don't recover. My onc waited about 16 months after the end of chemo to switch me from tam to letrozole but my hot flashes started getting better suddenly and we checked my estrogen and it was high - 5 and 11 in those 16 months and over 200 now - so I am back on tam as of yesterday. Can't use the AI if you have high estrogen.0
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Jenn - my dad and MIL both had cataract surgery and did fantastic with it, if you do have to have it. Sorry you have had issues - whoever said "don't look back" is brilliant! All of us were the bald, puffy, tired person you are describing - it does get better, I promise!
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Thanks Omaz! So I see, they run estrogen tests periodically to see where you are at. Strange how yours jumped up again.
Which is easier to tolerate - tamox or AI? Or is it just a crapshoot as to how you'll respond, like chemo?
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SpecialK - you're not "selling" it to me here. Assuming both your dad and MIL are probably over 60 while I'm in my 40's ;-).
I still feel sad today but I have a cup of tea in my hand, my dog by my side, the lights in the house on so I can see better, #ASCO12 on my Twitter feed, and I feel OK!
Jenn0 -
DT - Yeah, everyone responds differently ! I had to change brands for the generic letrozole (femara) but the second one was fine, first one upset my stomach. Right now I am enjoying the temporary reprieve from my hot flashes. I imagine they will start back up again in a couple days.0
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Dance
I went into menopause after my second chemo dx at 40, Onc ran hormone tests after rads which indicated I was in menopause and commenced me on an AI as he feels strongly that her2 BC is resistant to tamoxifen and AI's are better. (I'll let you do your on research on that).
After a yr on Arimidex I was dx with osteoporosis so stopped the AI, period returned at the 2 yr post dx mark, Onc decided that the risks of further bone loss with ooph was not an option and tamoxifen would make my uterine polyps which have occurred since period returned worse, so he is happy for me not to take anything as my hormone receptors were lowish.
I've had my hormone levels check every 6 months, looks like I'll stay premenopausal now.0 -
LouLou - there is that whole issue about tam and Her2. My onc PA said the AI gives a bit better protection than the tam.0
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Dance et al: it sounds like the tamox vs Aromatase IS subject to a lot more than pre or post menopause. I'm post menopausal, but also osteopenic, so my MO is putting me on Tamox to start (builds bone mass) and plans to switch me over to Arimadex in about 1 1/2 years.
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jenn - sorry, I just meant that they both did well with the surgery and had much improved eyesight, I was trying to reassure about the procedure when/if you have it. I am sure this is upsetting for you to be dealing with this at a young age, on top of BC and all it brings with it. Since I am 55 you can do the math - yes, my MIL is 80 and had the surgery a few years ago, and my dad passed in '01 from stage IV lung CA, at 83, he had the surgery in his 70's. He was an Australian - born and raised in Box Hill and Ringwood, outside Melbourne.
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Omaz: I'm SOOO confused....my onc says that you can't check the ER levels because the levels they checked to determine your ER/PR were from the tumor....she said the body produces estrogen and the blood levels are different than the tumor levels...but I certainly could have misunderstood her....because I asked how we know the ALs (or other) are working.
Chacha....I'm osteopenic (borderline) and they have me on Boniva (hate it) because the Arimidex destroys the bones.....
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Sorry Arlene - They checked the estrogen levels in the blood - estradiol. When you are in menopause that estrogen is supposed to be low, when you are not in menopause it is higher. The tumor has estrogen receptors. The amount of estrogen receptors on the tumor cells can be high or low or there can be none. Tumor cells with a lot of estrogen receptors can use ciruculating estrogen to help them grow. Tamoxifen blocks the estrogen receptor on breast cells and so can work when there is high or low circulating estrogen. Aromatase inhibitors block the production of estrogen but apparently only work in menopausal women. so if you have high blood levels of estrogen, such as in pre-menopausal women, AI's won't work because they can't block ovarian production of estrogen (that is my interpretation). Does that make sense?? Your onc should be able to test your circulating estrogen levels if you are pre or peri menopausal or when into chemopause.0
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Jennt- My friend had her cataract surgery at 45. She was one of the early tamox users. She does remember that the doses have changed somewhat since that time.
I know SE's can be overwhelming, but as the others have said, it does get better. Because of all the side effect issues, I had to end tx very early causing me to constantly question if it is enough. I've come to the conclusion that I've done what I could and whatever happens happens. I started walking everyday and that lets me meditate for a couple hours. Just getting out of the house helps, and interrupts the tape running through my head! Hang in there and treat yourself to something you enjoy!
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Thanks again everyone :-) SpecialK - we have. very good friends that live in Ringwood down in Melbourne!
regards Jenn0 -
Dance I was one of those gals that went into chemopause and got to take the ESD instead of tamox. I was already peri and just ended chemo 2 weeks before I turned 50. My mom started menopause at 51, my sister was almost finished at 53. Also I used to smoke (7 years ago quit) so that can bring on menopause a couple of years early. Anyway my onc felt (as did I) that my cycles would not come back. She tested me for about 5-6 months to be sure. Usually they put you on Tamox for a few years and if your periods don't come back they switch you to an ESD.
As far as Tamox not working on some of us (especially HER2+) I too have read that but it might be related to having low PR. There is no real reliable test out to show if tamox will work. I'm not sure how good these studies are either. These are good questions to discuss with your onc.
My onc prefers ESD because the SE are not as serious as some of the ones with Tamox
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As always, you guys are a wealth of information. Thank you so much for getting me up to speed on the basics and showing me what I need to research more. Your posts were extremely helpful - thank you!!!
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Whew! Thanks Omaz that is exactly what my onc said. I was getting worried about her. Since I'm menopausal (even before bc), she doesn't test. She explained it just like you did.
Arlene
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