TRIPLE POSITIVE GROUP
Comments
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Re: fingernails/toenails
I recently read an article about black nail polish and chemo. At first I thought it was an urban legend but I just googled it from my phone and it looks like a lot of people have tried it. My nails look bad enough with clear polish (dishpan hands) so I don't think I could stand to wear black polish without being able to take it off (from what little I've read you're supposed to leave it on for the duration of chemo and not remove it with nail polish remover).
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Hi everyone. Has anyone gotten an infection in their port. Im done with chemo but still have herceptin tx to do. Im taking cipro for five days and hopefully this will help. Im nervous now cause i dont want to lose my port now. Thanks for your help.
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LeeA - I put either navy or gray on just for the day of chemo so the light did not penetrate. Then I removed that polish with non-acetone remover and put clear Sally Hansen hardener on for the next 7 days in a row - every day. On the 7th day I removed it and started over. I also iced with frozen peas during the Taxotere drip. I had no Mees lines, no discolored nails, very little soreness, no ridges.
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SpecialK, I forgot about non-acetone polish remover. I think I might even have a bottle of it.
My husband had (or has, it's in remission) polymyositis that went on to become dermatomyositis and he had lines very similar to what these look like at the link below. They reminded me of EKG lines.
He had IVIG infusions but I don't think that was the cause. He also took methotrexate (oral) but I'm thinking the lines might have been caused by his over-the-top CPK numbers. Normal is, IIRC, 150 or less. When we finally found out what was wrong his CPK had gone up to 68,000.
Anyway, thanks for the tip on the non-acetone. I wouldn't mind wearing it as long as I had the option to take it off.
The cold peas route sounds like a popular one but I don't know if could stand being cold on both the hands and feet. The penguin cold caps sound interesting as well but again, intense cold is harder to tolerate these days. On the other hand, during pre-menopause, I would have loved it!
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LeeA - small world - my mom had dermatomyositis as well, she was diagnosed in 1979 after a lot of testing - it took them almost a year to figure out what was wrong with her. Methotrexate used to be a BC drug as well, but by IV when she was first dx'ed, she received it for about 2 years. The lines are poisoning lines - usually from chemo or can occur from exposure to other toxins also. On using the frozen peas - the Taxotere takes 90 minutes or less - so it is not that long to be cold - you can also bring a heated blanket to put o the rest of you. Ask lago to link the pix of her nails, you may decide that you are willing to be cold!
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MsTori, re the neulasta and WBC, I had the shots after each of 4 AC. I stayed healthy throughout chemo but WBC did get lower after each treatment in spite of neulasta. Never low enough to interfere with treatment, but very low. They rebounded during Taxol though, even though I didn't get neulasta with that. Im sure you're already careful about this, but I think staying away from crowds, sick people, and kids other than my own helped me stay healthy even when counts dipped to their lowest.
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SpecialK, I've been reading the archives (in order) and debated on whether or not to mention this but since you mentioned your mom having dermatomyositis I'll go ahead and say that when I got to the timeline regarding your brother I had a "small world" moment of sorts as well. My father had bile duct cancer/cholangiocarcinoma (2007). He lived to be 80 - almost 81.
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Also, I forgot to add that I've gotten to the point in the archives where I've seen the photos of lago's toes/fingernails as well as TonLee's abs and lago's abs as well (nice abs, ladies!).
And I nearly laughed out loud at what someone said on that page about abs. Now I'll have to find it again because it was such a funny moment:
"Noooo!!! Don't tell me we have to start posting ab photos!! I gonna post Halle Berry's abs and not tell y'all."
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LeeA - you will not be seeing any pics of my abs, regardless of how many pages you read, lol! On the subject of bile duct cancer I am so glad that your dad lived a full life - the heartbreak for my brother was that he was too young, only 55.
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I was really sorry to read about your brother, SpecialK and you are so right - 55 is too young.
My father was diabetic (type 2 - or whichever one develops in adulthood) and I wondered if that had anything to do with it but probably not. From what I've read here lately, the older we get the more liable we are to develop some form of cancer and yes, he did have a full life but the diabetes had really taken a toll on him. He was partially blind, had severe neuropathy, etc. so his quality of life had really gone downhill.
I've always had the impression it's kind of a rare form of cancer - or at least that's what the family doctor told my mom.
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LeeA - yes, a rare form of cancer without much available treatment. He left four sons in their 20's who were not ready for the loss of their father. My brother's oncologist said it is more common among those born prematurely, or with low birth weight. It had something to do with differing maturation rates in the bile duct/liver/pancreas area. With the ability of very premature babies to survive now I wonder if we will start to see more cases of it.
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I did have my peas in a cooler with a frozen ziplock bag full of frozen water (solid ice). I wish I bought those special gloves. As you know my nails never fully recovered.
Abs… I did build mine up again but they don't look as good as in that photo. Not sure if it's the extra few lbs or the lack of estrogen not letting them build up as much.
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lago - I put the bags of peas in insulated lunch sacks, two bags per sack and then stuck my hands in there and partially closed the sacks, same with my feet. wooo cold. I would have liked the mitts too but they are kindof expensive. Sorry to hear that your nails didn't go back to normal yet - I remember it sucked. Are your eyebrows back? I am just now filling in the outer parts. I pretty much kept the inner part but the outer is just now starting to be filled in, 2 years later.
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My nails are not going back to normal. It's been 2 years. My dermatologist tried some things but she said that she has a few patients with taxotere ruined nails. You'll never know if you nails would have been OK without the ice but glad you don't have the issue.
My eyebrows returned and looked great but then started shedding again because of Anastrozole. They are actually are thinner than before chemo now. I just fill them in.
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Oh I'm trying to catch up here.
Brenn I'm so sorry u have to be baack on this horror filled road. It's just no fun, but is u'r comfortable with u'r team of Drs. (I hope so) u'll feel better mentally.
Geeze Special I've had my port since June of 2007 and it's still being used I remember asking when I could have it removed and my Doc said he hought it was a good idea to keep it in, unless I have a problem, then he's replace it---but u can't use either of my arms anyway--so I'm glad I have it,
Lee when r u getting u'r surgery? I'm glad tho u'r getting it over with--it's a relief when it's done cuz then everything really goes in motion.
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camillegal if I wasn't done with treatment I would still keep my port. Matter a fact they wanted to be sure my last liver scan was clear before they removed it. I won't be getting any more chemo, herceptin or liver scans because I'm officially 2 years NED.
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Kay and omaz leave it to u2 to be able to just talk. LOL That's what I need thaen u wouldn't have to try to read my posts with my horrifice typing and now spelling. LOL
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Both my BS and MO say keep the port indefinitely, it only freaks out the PS. I have had a bunch of surgery with him so I think it is the clotting risk he is afraid of. I don't want to remove it because it was placed during BMX so I have no scar from installing it, but I will if I remove it. Mine is subclavian, so the scar would be visible 100% of the time except in a turtleneck - don't wear many in Florida!
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Thanks Shore- appreciate the info. Kind of weird to see my labs going from looking great to looking like my patients lab values. Eek! Lol!
Sol- wow! All in one breath? Your good! Haha! I am trying to keep up. Day 3 post 2nd chemo, and just had my phenergan and ate breakfast. That is about all I can keep up on right now. Lol! I have some music downloaded from spotify. I wonder how long till the VA will get wifi. Hmmmm... But really, for the first 90 minutes, all I do is sit there and shiver and shake and clock watch. Or get up to pee a dozen times! lol! So, it's really only the last hour or so that I need to be entertained. My mom is able to sit beside me during my icing, and God bless her! She really tries hard to distract me and make it better!
Cami- good to hear from ya!
TonLee- sorry, just have to sing your praises again! Thanks for the info on mag ox. You may hear this every chemo. But no worries, my next tx and I'm halfway done! Lol!
SpecialK- thank you so much for your encouragement, and help. Sorry I will miss you this month when I'm down for my appointment.0 -
mstori - me too! I will be glad when I stop being a jetsetter!
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Pbrain I don't know how u'll be set up, but I was with about 12 other people men and women and the first one was pretty quiet and I slept alot, but after thst I started to talk and we all talked with each other and laughed and had so much fun and the nurses served us cuz we'd have little buffet there people brought food and we'd order pizza and the time flew by, mine was usually about 7-8 hrs. I was the ladt to leave but not by to to much. And it was fine that day-so please don't be to nerveous it's not bad getting it and I has nuelasta alot and I was actually OK with that--But I didn't like coming back the next day getting another IV for potassium cuz that was like my good day and i wastef it (I thought)
But it was funny cuz I knew that the combination of POT. and something else? is used in prison to people who have the death penalty so I was always checking the drip, and of course the nurses called me a drip. I get pot and mag alot and it still bothers me. I was so lucky having great people to take care of me--Now that I've moved I have all new people and they've gotten to know me already and just the 2nd time I was in the hospital all the nurses knew me??? and they treated me and everyone ther so wonderfully. alot of them would take a break in my room and we'd sit and talk and laugh so I've been blessed with good treatment people.
But when getting chemo there was 1 woman that no one wanted to sit by--So the nurses would ask me to and I did she was only coming for 8 weeks or something like that, that was a little misery LOL
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Tonlee Halloween---hahahahaha so true.
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Lago I had to catch up in pieces----It's good to have it out (I think) but it's not practical for me--But I protect it with my cat cuz she's always laying on me so that's my concern at this point. LOL
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ccamillegal I actually debated about getting it out because I don't do sticks in either arm. I could get my blood draws through my port. Now I might have to get them in my right, 4 node, at risk arm because no one will draw from my foot. Guess there is a higher chance of infection/phlebitis when drawn from foot. I am just tired of having it flushed every 3 months.
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I have my last herceptin on Wednesday. My MO said port can come out & I was planning to do that by the end of the year. Am I making a mistake? I know its handy for blood draws but ill have less & less of those once done with herceptin (hopefully). Appreciate any advice.
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But can we keep our ports for life? Expecting to live at least twenty more years. I will keep it if so. Mine's a plastic Medport.
Welcome to the newly diagnosed.
Pbrain, glad to have an MD in the house.
Had IDC and DCIS as well, but my BS just concentrated on the IDC.
I read everyday tho i dont post. Yes, Cami, i missed your absence.
Will get my first of 12, triple herceptin dose this wednesday. Did some step ups and a lot of split squats today. I hope the delayed mscle soreness doesnt aggravate the joint pains you say we get from the herceptin. Really trying to slowly and regularly go back to phyical activities now that im 6 weks pfc.
TonLee, lago, kayb, solt, specialk, omaz, geewhiz ( nice job, btw, a victory for us all!), ang, fluff, etc.. thank you all. I learn a lot from your posts0 -
I haven't been here for a while, nice to catch up.
I had my port out a couple of weeks after last herceptin, but I had UMX, and am not a hard draw. My friend is keeping her port in because she has always been hard to draw blood from. I think that I would have kept mine if I was a hard draw or had a bilateral MX. I'm at moderately high risk for recurrence, by my BS said that they could always put one back in if necessary, and I already had the scar, which I must say is hardly visible.
Lago - my nails haven't completely recovered either, they were never as bad as yours, but they all were only about 1/4 of the way up the nail bed at their worst. Didn't ice. They've grown out mostly, but are ugly, lined, brittle.... nothing seems to help. Eyebrows haven't recovered either, they are about 1/2 of what they were before, but I've gotten good at drawing them on, wish I had been able to draw them on as well during treatment.
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SpecialK - my port scar is pretty low down on my chest and doesn't show in many outfits. I had subclavian as well. I was really concerned about the scar showing in shirts, etc, so I discussed this very clearly with the port surgeon; she was able to put it in pretty low. So, the scar may not be as big an issue as you think, but you'd have to see what the surgeon says.
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Good morning everyone -
I use Tweetdeck for Twitter and just now a notice popped up on my screen that I thought might be of interest -
Bubbles of Trouble for Tumors (from LiveScience.com)
http://www.livescience.com/24523-bubbles-of-trouble-for-tumors.html
Here's a snippet from the article:
Researchers are in the early stages of creating a new method that uses bubbles within bubbles to deliver chemotherapy drugs, and could someday reduce the treatment's significant side effects.
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As I was skimming tweets I saw one from Dr. Deanna Attai who is a breast surgeon on staff at St. Joseph Medical Center here in the Los Angeles area that may be of interest to you lago, or anyone else with lymphedema. It's dated December 2011 so you may already be aware of it or read about it back then.
Stanford School of Medicine:
New registry will track lymphedema among breast cancer patients
http://med.stanford.edu/ism/2011/december/lymphedema.html
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Special K, four boys in their twenties...my son is in his twenties and I can only imagine how hard this must have been (and still is) for your nephews. Re: the premature birth theory, that's really interesting. I'm thinking my father (born in 1926) was born on the kitchen table (???) and was a very large baby, i.e. in excess of nine pounds. He was diagnosed in late June of 2007 and was gone by August 6, 2007. They told him (or actually, my mom) he had six months to a year but that sure isn't how it all worked out. I think they said his tumor was the size of a softball? Wow, that seems really large and now I'm wondering if I've got that wrong.
soltantio, glad to hear your weekend was fun and not exhausting! I've looked at Dr. Hardy's page at UCLA and should probably schedule a consult with her. I do take a lot of supplements (but not this week!) and one in particular (curcumin C3 with bioperine) makes a night/day difference with lower back/hip pain. I started taking it in late July, primarily because of some studies I had read about its ability to induce apoptosis in breast cancer cells. Someone recommended this brand, saying it didn't cause constipation (I had tried turmeric for hip pain and skin conditions in the past and quickly abandoned it for that reason). Anyway, the amazing (and I don't say that lightly) result of taking about 2000 mg daily of this particular brand since July has been an almost complete reduction in hip pain. I suppose some might consider it psychosomatic but I didn't start taking it this time with the intention of it helping my hip (the other brands never touched it). I had to stop taking it (and all supplements) a week before surgery and on Saturday, for the first time in 3-4 months, my hip started hurting during mass (stand up, sit down, kneel). Yesterday we went to a play and had to stand around for about 45 minutes to an hour before it started and once again, that old familiar burning pain was back - even more than the day before.
Since July we've been on two trips (walked through airports/walked on the beach, etc.) and I've done longer walks on the track than ever before (up to 3 miles at a time and even some walk/running) and never had ANY hip pain. I thought the difference might be attributable to the curcumin d3 but didn't want to stop taking it to find out. Well, now I know for certain. I was going to the chiropractor 3x a week last summer. I wish I had been taking this back then - we could have saved a lot of co-pays! And no, I don't work for the company that makes it - lol. I'm retired.
Re: the cold caps - I'm really conflicted on this. On the one hand, there's the cold to the bone feeling I've had for the last year but on the other hand there's this little nugget of nonsense: when I had rhinoplasty in 2001 the plastic surgeon really pushed for a forehead lift. I was still working and was fighting the ravages (heh) of aging so I decided to do it. As a result, I have a scar from ear to ear across the top of my head. There have been many times I have wished I didn't have that procedure and I even had fleeting thoughts throughout the years like "what if I ever have to go through chemotherapy?"
Well, here I am, eleven years later with chemo on the horizon. Additionally, I have acne scars and doing the bald is beautiful look just isn't an option for me. My hair is kind of a protective veil for me - maybe it is for most women - but in my case, it's acne related (15 to 54 - The Acne Years
). I don't have thick hair. I think my hairstylist has described it as being fine but I have a lot of it in the back (of course) but not as much where I really need it (the hairline) but over the years it's filled back in enough to not have to worry about it blowing back and showing the Frankenstein scar. TMI, blah blah blah, but anyway, if I go with the cold caps I know it will probably get thinner and probably in the wrong place (the front). I had to chuckle at one of the posts in the archives - in fact, I saved it to tell my husband about it. Some of you probably remember it (I didn't save the author's name):I don't shave under my rads arm either....and for TMI...hair in bikini zone only came back in areas postchemo that must be shaved to wear a swimsuit....the exact opposite of ideal. God has a sense of humor.
The last line reminded me of Voltaire's "God is a comedian playing to an audience too afraid to laugh."
So, to hair or not to hair - that is the question. I don't love my hair but it makes for a good hiding place; however, I'm sure the place it will thin will be the front and looking like Beetlejuice won't hide BigScar and will make it impossible to wear a wig. Ahhhh, good times, eh?
And yep, soltantio and camillegal, I'm looking down the barrel of the gun right now. Wednesday. Every day I hear at least one thing that keeps me mentally afloat. Yesterday it was a section of an email from one of my husband's former co-workers:
I have had a number of major surgeries in my life, but I have to tell you that my mastectomy was a walk in the park compared to most of them. My friend, C, went with me and the breast was removed in the morning at a surgical center in Beverly Hills and C and I were shopping at Bristol Farms that afternoon. Not everyone sails through this surgery in this manner, however.
She didn't opt for reconstruction, so there's that, but I do recall her saying about a year afterwards that breast cancer had been easier for her to deal with than the very debilitating back pain she had experienced a few years before being diagnosed with BC. Also, she didn't opt for chemo so it must not have been HER2+. I just reread the email - she did have 21 nodes removed - all cancer-free. I don't know the size of the tumor.
lago, I know you used the ice but were you one who also tried dark nail polish? I was reading another older thread about nails last night and saw your posts about the odor. Did that part of it eventually clear up? Re: eyebrows and Anastrozole - oh boy, I'm nine years postmenopausal or eight, if you count that year when they say you can't be "officially" postmenopausal (last period was 2003) so I'm guessing Armidex is in my future. I say "oh boy" because I already have some goofy-a** eyebrows. A facialist once told me she had never seen eyebrows grow like mine! Good grief. I want to blame my cancer on Diet Mt. Dew when I'm probably just one big walking genetic defect!
soltantio, re: Fukushima - the Tōhoku earthquake (the 9.0) happened on March 11, 2011. I know nuclear energy/Fukushima can be a controversial topic but here's a link I just found in case you're interested.
USGS: Los Angeles area had highest cesium deposition in US after Fukushima
http://enenews.com/usgs-southern-california-area-had-highest-cesium-deposition-in-us-from-fukushima
This is such a complicated topic but once again, perhaps it comes back to genetics:
This test of p53 induction may be useful in identifying
persons at increased risk of DNA-damaging effects of
ionizing radiation (Birrell & Ramsay, 1995). AT is a
heritable disease characterized by increased radiation
sensitivity and risk for cancer.
http://toxnet.nlm.nih.gov/cgi-bin/sis/search/a?dbs+hsdb:@term+@DOCNO+7389
In any case, there's not a darn thing we can do about it now but that doesn't
make me any less curious!
Sorry for the mini-series, everyone.0 -
hi ladies
there are some really long posts here so i tried to read as much as possible
i also iced during taxoterrible and i did ok with my nails, some black areas but not too bad. I had a couple of events that i needed to camoflauge the nails so i did use dark nail polish (OPI has some great ones)
i hate to come on here just to bitch and complain but i am at my wits end. These expanders are still horrible and i am still on various pain meds to control the pain. I am 3 wks post op today and i really thought i these pec muscles would stretch out and be more accomodating. I realize i am certainly the minority here. I feel like I have zero QOL - I am going to have a serious discussion with my PS at my appt wed, I am ready to give up on these. I am trying to learn more about implants OVER the pec muscles. Someone here on bco had it done but in CA. Didnt even know that was possible until i started researching it here. I cry every day because of the pain
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