TRIPLE POSITIVE GROUP
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gotcha,susanHG123! it's the only thing that helps me!!! although i have found this cream i swear by, called topricin, and you can buy it online cheaper. it does seem to help me. i put it on my feet, LE arm and whats left of ca boob. also general aches and pains. boyfriend thinks i am crazy and its worthless, but i have told other women about it, including my 80 year old arthritic mother, and they all love it too. give it a try, maybe.
cypher, i was/am having rib pain almost constantly since surgery. i did have a few lumps, there a couple months back, and they found enlarged lymph nodes "conchordant with the disease process"... apparently, the rest of the nodes are trying to do the work of the missing ones. but mine have hurt almost constantly, also exacerbated by the anti-hormonals, in my case i think. yes, i am so tired of it. the pain is really wearing me down. but for sure, tell your doc.
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Notbuyingit my onc doesn't do tumor markers (unreliable) nor does she do scans without symptoms. I did have my liver scanned a few more times because they did see somethings at the initial scan. After 2 years they either where stable or went away so the belief is they are cysts. I had a BMX so I only get felt up 2x a year.
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thanks, lago - wonder what "symptoms" they will wait for...originally i thought they said they would do another CT scan to check for any growths that weren't there originally...
talking about one year from diagnosis, my surgeon for the Mastectomy wants to see me
SusanHG123, I have found the Acetyl L-Carnitine/L-Glutamine combo really has helped the pain lessen. Some of the creams just seem to make it worse.
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Notbuyingit Ask your onc what symptoms you should be watching for and how long. It's usually certain types of bone pain, headaches that don't go away with regular meds, jaundice look, cough etc. Most of these symptoms should be ongoing for 2-4 weeks before you call but check with your onc. I'm sure I'm leaving something out. Chances are you will talk to your PCP first... but if these are ongoing it's always best to let your onc know too. And of course we all know that blood is not a good sign but doesn't always mean cancer.
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notbuyingit, my doctor did only a bone density scan and a Muga scan. Then just regular blood work no tumor markers. And yes, a little soft squishie stuffed lamb was my neck pillow. It fits just beneath my neck in the infusion chair. I used it in chemo and at home in my recliner. It also was good for hugging! LOL
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Lago: thanks for the sugar linky...good read. So what us everyone's thoughts about alcohol consumption? For dome reason I am super nervous about this and do haven't had a drop since diagnosis and have even dropped out if a wine group I was in
I'd appreciate to know what others are doing or what their MO has said. Thanks girls 0 -
thanks for responses ladies! i know i have to take one step at a time....
as far as alcohol, Girlstrong, I have avoided it also - mostly because at my age it just makes me tired ha!! & more tired I don't need to be!! but i hardly think a glass of wine or beer would harm us at this point & the chance to relax a little could be very beneficial
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I have not changed my alcohol consumption. It amounts to maybe 6 glasses of wine a year at the most. I was never much of a drinker. There are some small risks I am willing to take. 6 glasses on wine a year is OK for me as long as it isn't all in the same month.
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girlstrong, alcohol isn't supposed to be good for you from a bc perspective. That being said, I still drink, as in the occasional glass of wine when I am having dinner with friends or at a party. I try not to have more than one, and I never have more than two, and I try not to have more than 3 per week. That was the recommendation of an oncologist who specializes in nutrition and complementary medicine.
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Yay Honeybair and GIGIF! The milestones are wonderful and kind of bittersweet. I went to my cancer center for my 3 month post Herceptin appointment last week and it was like an alumni homecoming. Everyone was hugging me and gossiping about which nurse had a boy and which nurse had a girl. It was fun!
Well, sadly no magic potion from my Uncle. He said B6 and B12 (sublingual), healthy diet, lots of foot pampering and patience. And he said what so many other doctors say "it may not resolve..." arghhhhh!!
I know alcohol isn't good, but I love my wine and don't want to give it up. I'm trying to be more moderate and less of a Scot these days. But I still drink way more wine than most people...
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Pbrain mine didn't resolve but so far not too bad. Just hope it doesn't get worse with age.
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Pbrain! Look at all that hair! when did that happen? it must have been that magical hat, or the wine! im gonna go have some now!
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back to nueropathy...is there anything that isn't cured with healthy eating & exercise? good grief! can't i just get a pill? Ha! my memory is failing but my sarcasm seems to be intact
)so it sounds like i am taking the right things...do we know if being on your feet actually makes it worse? or just makes it FEEL worse? I agree that my feet feel the best without shoes - I think they just warn you against that in case you get a cut or bruise & you don't feel it.
basically i think i could tolerate this whole thing better if I had a nightly head to toe massage (no strings attached) wouldn't that be lovely, ladies??
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notbuyingit - I had just an occasional twinge of tingling during chemo; was taking l-glutamine and B6 throughout my weekly Taxol + Herceptin. Onco nurse suggested continuing with that for a few weeks after chemo, but I ran out of l-glutamine just at the end of chemo and didn't buy more. (I was tired of taking it and figured I wouldn't have any problems.) Developed a numb big toe about 3 weeks after finishing chemo (December 2012). It eventually got better. Then in August my niece came to visit and we walked around the Mall of America for a good 8 hours one day. That night - numb big toe back. Now as of a couple weeks ago it's almost back to normal. For me, at least, being on my feet all that time did seem to trigger the problem. I'm lucky, though, that it's only been the one big toe.
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all my toes are numb
feels like i'm wearing those socks with the toes - remember those? the tips of my fingers only bother me when i wash dishes in hot water. Mall of America!? you are brave! I've been tempted to use the scooter @ Walmart Ha!!
thank goodness for family, friends,& now you guys!! love it!
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P-your hair! My gosh it is amazing! Have you been hiding it under a hat? And why? You get younger and younger looking each new picture. Not fair!
My MO just told my mine-probably won't resolve. Doing the B6/B12. Exercise-what a joke. Feet hurt. Joints and muscles and bones hurt. But sure. Exercise. Try to eat sort of healthy. ETOH. Crave beer. Hate beer. Last beer prior to the craving was when I had one child and now have four adults. Pick the beer for the label (have learned to read the label and avoid thinks like-pumpkin pie flavored) drink about half a bottle until it gets a bit warm and dump out. May have another half. Used to love wine. Now makes my head feel like it will explode. Used to prefer really good scotch above all. Now tastes like dirt.
I used to have massages. But even the person who is trained in massage for people with lymphedema and cancer-I leave hurting.
I just want a pirate.
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sounds like we all need a drink of some kind!! i prefer a couple of shots to get right to where i wanna be without all the pee-producing liquids Ha! it's been quite a while tho
my pic is pre-chemo >sigh< my daughter was in a band for 5 yrs so I had an excuse to get out & dance a couple of times a year... talk about exercise
nite, ladies!
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ps Susan why do you want a pirate???
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yes that is the question that MUST be answered. Or not.
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As long as he's a handsome devil pirate I say go for it Susan! LOL
Pbrain I love your new pic.
I have a glass of wine or a small drink about 1 or 2 times a month. I'm just not going to worry about it. If I can fit in the carbs because of my diabetes I go for it.
My neuropathy comes and goes so far. I can deal with the numbness but I hate the knife like pain in the toes. Ouch.
Much love.
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Well. As you may or may not remember my @#$#$ husband-now ex walked the day my port was placed July 2012.
I always wanted a wife. As a young mom with little ones I wanted a wife. As they grew I wanted a wife. After @## was gone I really wanted a wife-to do the things that really needed doing while I was doing chemo. And vomiting. And more.
And. I wanted a gay best friend. I know. Not PC. But I had almost always had a gay best friend until I moved to NM. To watch movies with, to help me with the scarves, etc. I know. Not PC. Didn't care.
Then. Had some sad times. Great friends. Wonderful kids-who all lived away from me-nearest 3 hours-farthest 10 hours. And it came to me. I needed a pirate. Pirates are fun (not the mean ones who kidnap ships-but nice fun ones-think Johnny Depp). So I told my best friend-a male-who immediately started an online search for a pirate. Then he decided the paramedic crew in my building (these are the guys/ladies you want to find you on the side of the road-but when teaching or off duty-are lunatic crazy fun) would form a pirate clan. I am Emperess Susan of the Work Pirates.
I think at my age and not a lot of hair and boobless that a pirate would be the perfect male companion. Could not have a hook due to my tissue paper skin-not that there would be any sex. Peg leg is fine. As is patch.
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I soooo hope you find a perfect pirate, Empress Susan!
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I'll second that. If I see any around here I'll send them too you. It used to be easy. We used to have Pirate Fest here until 2 years ago. Then they had insurance problems and they had to cut it. No handsome pirates around here anymore.....
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Thanks! I can't remember (chemo brain) who lives in Miami-but there is a convention of Pirates every September. Yes. A convention! Or maybe a parade. Not a parade because they bring ships. Something. But I am looking for a conference in Miami so I would have an excuse to go and have it paid for. And gawk at pirates. I am old. Not dead.
Sweet dreams ladies. Without allergies!
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here ya go Susan... It passed for this year, but should be back again.
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Susan - I live in the pirate capital - we have a parade, and an invasion - it's pretty crazy and fun. You should def plan a trip!
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Love your new picture Pbrain!
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yes, the theme from Disney's Pirates of the Carribean has been running thru my head
yo-hooKathec, are you still taking the Tamo? I heard it can cause joint pain so i am skeptical about it - already have enough of that
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Thanks for the compliments! I still have to flat iron this hair or I look like Bozo the Clown.
So question for everyone. I saw my MO last Monday for my 3 month follow-up and he said go ahead and get rid of the port. The hospital has been calling me to set that up and I just called them back. They told me I would need conscious sedation and a driver to take me home, no water/food after 12 a.m. ect. I thought you just got a shot of lidocaine and they pulled it out. Anybody go through all that just to get rid of a port? My boss says she didn't. Im so confused... ;-)
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Pbrain I am a long way from port removal, but my surgeon told me she removes them using a local.
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