TRIPLE POSITIVE GROUP
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Sunday afternoon here...
Dropping in to say that I have been reading along. Since I'm on my iPad I can't type fast enou to mention everyone, but know that I am cheering you on (last Herceptin!) and sending big hugs (losing hair, chemo side-effects and all other crappy things that are happening to some).
I seem to be well on track to recovery from my surgery. Just passed the 4 week mark and I think that by the 6 week mark I will be feeling almost normal again thank goodness.
Took my self off to the hairdresser yesterday morning and asked to be turned BLONDE. I have been dark brunette my entire life. Tried to talk my then hairdresser into turning me blonde about 10years ago and she refused (kindly) because she just knew I wasn't up for the maintenance etc.
Well, since my hair is so short growing back after chemo I figured this was the ideal time. Took in a photo of a nice pale gold, shimmering blonde as an example of what colour I'd like to aim for and they did warn me that they can't gaurantee the exact colour on the first visit. Well, this chemo hair challenged them! I am blind as a bat without my glasses so all I could gather from the whispering behind me was that things hadn't exactly gone to plan. I stayed calm and didn't look though.
After 3 hours and a number of different substances on my head I came away with what my husband is kindly calling "honey" coloured hair. Seems that the chemo messed things up and at first it went fluorescent yellow! The next two hours were toning it down to not "quite" fluorescent yellow :-/ I am assured that on my return in a few weeks they will be able to get it closer to the colour I really wanted and in the meantime I have special shampoo, conditioner and a once a week toning mousse to use.
I'm due back at work tomorrow after 4 weeks off for this surgery. Goodness knows what they are going to think of this new me - new D cup breasts (was B/C), flat size 16 stomach (was size 18 middle aged spread stomach) and bleached yellow hair. This should be good for a laugh...
If you want to see a photo (of the hair) you can see it on my Twitter feed - @Jenntrix
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Shore,
You and I have the same age thing going on. I was 41 at diagnosis, turned 42 that week, and YES my periods came back....I should have known because my hot flashes went away...
Solt,
Chemo blues. They are tough. My worst came after #5. I was still "feeling" it when I went into #6. But I can tell you, after you're done with that last infusion.....just KNOWING that, makes the coming weeks seem not as bad....well, it did for me.
Ms Tori,
The eyelashes tend to stick in a little bit for most of us until about two weeks after your final chemo. Then they go. And if they all grow back at the same time, you can plan on losing them a couple more times (google eyelash cycle) because of their cycle.
I lost pretty much all of mine after final chemo. I think there were two left...lol. Then after they grew back in fat and long, I lost 1/2 of them with the natural shedding a few months later...and the last time I lost a significant amt was 1 year PFC.
But that was me. Your lashes are unique to you. Some women never lost them all.....
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So I've mentioned before I have a mental list of most annoying things about menopause.
Painful sex is certainly the first. I'm addressing that with DHEA cream.
Changing body composition (no matter how much I train) is up there, but it is what it is, and falls behind my mind/memory issues.
I can't even begin to describe (because I can't find the words!) how much my mind has suffered. I take fish oil, I take L-Carn. Nadda.
So I've been looking for something, ANYTHING, that has some actual data behind it. I found a double blind study done in 2010 (over 400 people participated) on DHA. It shows improvement for "older" people with memory. Does anyone here take it? IF so, experience?
Here is the conclusion to this particular study:
"Twenty-four week supplementation with 900 mg/d DHA improved learning and memory function in ARCD and is a beneficial supplement that supports cognitive health with aging."
http://www.ncbi.nlm.nih.gov/pubmed/20434961
I am going to try this. I have to do something!
For any of you ladies on the east coast! Stay dry and safe the next couple days!!
Edited to add: My fish oil has DHA in it. But I wonder if there is a "better" kind? Hmmmm. The only mention I see to the study is "Life's DHA." And I think Wal-Mart has that...lol
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Rozem...congrats on your last Herceptin ...
Kayb...thx for the generic anastrozole info. I checked it out and the new script has AHI on them. Apparently it's an Indian manufacturer and I think Lago sid she preferred the Israeli generic from TEVA. I had no idea there could be such a difference in SE's .
Concur with Ton Lee on the eyelashes and the brain issues. So far I've lost my lashes twice. The second time just when I was bouncing back from radiation . That time was one of my most disheartening moments in this past year.
Absolutely agree on the thinking process. I know my thinking processes have changed but I cannot pinpoint the difference. I think my decision making process may be off as well. I doubt anyone else would notice .
Ms. Tori.....I had scalp discomfort during and after my hair loss. The best way I can describe it is the way your scalp feels when you have a very tight ponytail . The scalp kind of crawls with discomfort when you undo it.0 -
Sol, hang in there. You are so far through the dang stuff so do your best not to get too discouraged. I haven't even started yet and am dreading it like crazy! Oh, and yeap, I have my port. It is healing nicely, but it itches and is really gross to feel
One of my buddies who is a nurse was touching it at lunch yesterday and he explained to me that it has 3 holes, and pointed out the little wire that is holding it in place. That helped for some reason. Guess it made me feel like there are tons of people out there with these. But I will ask the MO about swimming. I go for my chemo lesson appointment this week.But you do everything you can to just hang in there. Go buy some nice facial cream. You're gonna be shiney and happy very soon.
Jenn, I love the idea of going blonde and plan to do it too some day. I was dyed a jet blue black on Friday just for fun. My hairdresser knows she won't have to clean that up later so she suggested it.
Shore and Rozem, sadly enough, you could get your period again. My boss was ~46 at her diagnosis and it came back again after 2 years. The poor woman was in Switzerland in a business meeting and she had not a single tampon. We laught about it, but that's really a nightmare. Meanwhile, the wife of one of my good friends at work was diagnosed at ~40 and she is 5 years out and never got her period again. They are thinking of putting her on the aromatase inhibitors instead of tamoxifen because they told her she is menopausal now. Look at it this way, having your period is so good for your bones!
So I watched some documentary on breast cancer on streaming Netflix last night. There were all these survivors on there (Olivia Newton John, Melissa Ethridge, so very beautiful Indian and Australian actresses). It was so melodramatic I had to turn it off. Why do we have to make this health crisis so dramatic and pink? Drives me nuts.
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Solt I have to admit by the time tx5 came around I just "didn't want to play" anymore. The stiffness and the nail issues really got to me… but everyone has their own special SE that suck. I also felt I looked older on chemo towards the end. Once your hair starts to grow and you just feel better you will look like your old self again.
Tonlee I too am disappointed I can't quite get in the same shape as before diagnosis. The lack of estrogen is making my skin on my body all loose and bit more fat in my middle. I mean I still look good but I looked better before yet my strength training is using higher weights now. My lower body just can't get back… but I am 51 so some of those body changes would have happened anyway. I can still fit into the same jeans.
Rozem I believe my PS did about 50 or 60cc at a time. Not sure what he filled me with to start. I had 10 expansions. The last 3 hurt for a day but I took Aleve.
Jenn chemo does weird stuff to your hair. It will take about a year before the old stuff comes back. I was very red the first time my hair was dyed. Took a few tries to get the right color and one that covered all the new gray. BTW I went from a small/not full 34B to a very full 34D! I think I look more like a C though unless I have a very tight shirt on.
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Thank you everyone for the information on hair, eyebrow and lash fall out. :-( my hairdresser was supposed to be over this morning to shave my head, but is sick with fever. Will see how she is feeling this afternoon. If not, then shaving is pushed to tomorrow morning. (We both will be wearing masks.) chemo scheduled for this Friday, and taking no risks. Just want to her to be the one to do this. She is a good friend and has done my hair since 2005. So, hair still in pony tail, and contained. But falling out more and more. :-( I ordered some head buffs, and that cheered me up some.
Sol- I had 5 days of mental blues after my first treatment. It was rough. I'm a Christian, so I prayed a lot. Plus, family and friends were also there to just here me vent. And of course, all of you are here for me and that really helps. I hope you do start to feel better soon. I don't have experience to draw on, but I do know that beauty is on the inside, and I'm learning this with the hair thing. It's still hard, but I know when I see others, I see them for who they are on the inside. Because they could be the most gorgeous person on the face of the earth, but if they are ugly on the inside, I don't care to know them. And you sound like a beautiful person.0 -
Kayb- you can be my cheerleader any day! I love your spirit. Your awesome. :-)
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Sol it's a hard time for u right now, but it does get better for almost everyone.
Pbrain u r certainly so good at what u do, it's a pleasure to have u here. cuz in a couple of weeks I have to see the Card. again and I'll have questions after cuz I know I won't understand anything--This I'm paying attention to--the heart thing scares me and his nurse called the other day and my levels were low and he wants me ro see a gastrologis??? if that's the right word, cuz they go so low cuz of my Diarhea I've been to one a while back with tests and nothing could be found. So I'll have to do it again I guess. Thiss started the first week of chemo in June 2007 and finished rads in the late summer of 2010 and I still have it as one of my SE--I know I complain about it alot but I thought I would be finished without a lot of things that are happening to me--like my nails are lifting all over again and of course I said such a stupid thing to the Card. I actually pointed to my 2 ring fingers and said these are like connected to u'r heart and their falling off. He was like 30ish and just stared at me and I knew it was stupoid, then I followed that statement with may u weren't there the day they taught tjst. See zi keep going with stupid remarkd all the time and zi did thank him for not typing tjat in the computer tho. LOL
Anyway I'm way out of chemo but not Drs. and hospitals but I have to say they are very vigilant with whayever is going on with me.
And I'm sorry but all these celebrities who speak for cancer look so good, it surely doesn't look like they had cancer--so I think if people saw me they'd reall contribute thinking OMG I don't want to look like that. My hair did grow back but missing in some places too And my lashes are so thin and short u can barely see them and my brows came back but I need pencil now cuz they are not like before hahaha so I'd be a perfect poster woman for contributions. I'm sorry I came on to cheer up Sol and instead I ranted.
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((((((Sol, Cami))))))
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Cami ranting is good for all of us. And I want to say that my 51 year old boss who is not what anyone would consider gorgeous is so much more beautiful to me than Olivia Newton John or Jacquiline Smith. She is a survivor, 5 years out, no eyelashes to speak of, and one of the nicest, warmest people I know. We aren't all about our outside. With your sense of humor and candor, you are beautiful in my eyes!!
What was low in your blood work? red cells? And you are definitely not stupid to ask that to the cardiologist. The fingers and toes are so far away from the heart, that they really can be the last things that get fed with blood. I think you are very clever because in your own way, you made that connection!
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Oh Pbrain u give me to much credit, but I will count on u for my Q & A's LOL
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Cami- lol! Thanks for the laughs even when your the one that needs cheering. I can get on my old cheer leading outfit, but I'm afraid it won't be a pretty sight. Lol!
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How would we know where taoxifen or other drug is made? I'm taking Mylan brand and am having a pretty good experience with it so far, but reading posts about not trusting drugs made in china or india is making me wonder.
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Solt - I had really dark circles under my eyes during and after chemo. My brother even made a comment about the areas around my eyes looking dark (brothers...uggghh!). That made me even more depressed about it!
I found two products that have helped considerably.
1) This highlighter really makes the eyes look brighter:
http://www.amazon.com/Yves-Saint-Laurent-ECLATRadiant-Luminous/dp/B000SGQWY4
2) ROC Multicorrection Eye Cream with Retinol (I noticed a big difference in circles after about 2 weeks)
I'm hoping the eye cream and a new AHA product I'm trying for the first time will help my skin be a bit firmer. I definitely see more sagging already and creping under the eyes is becoming more prominent. Chemopause sucks. That is all.
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Salt I'm actually a non believer too. I think my NP was shocked when I first met her (nice Irish Catholic woman) and told her "It's a good thing I don't believe in god or I would be pretty pissed at her right now." She now knows me and can deal with my humor. I am impressed with those that can have blind faith but I'm just way too Spock. (Spock was actually my fav as a kid.)
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Lago, count me in too. I had a thing for Spock. Raised catholic, but not practicing that.
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Life hasn't been a bed of roses, or I wouldn't be among you. But all things considered, I've had more than my share of what I call serendipity. I've got a pretty basic sense of what I think is real, that I trust to guide me.
A.A.
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I've been scanning the posts, and smiling at the energy and honestly here. I dunno, seems to me 'quadruple positive' would be a better name for this forum... that extra one just seems to apply to the women here!
I'll spend more time checking out posts... seems like a ton of info here. I've just finished chemo, continuing with herceptin, tamoxifin to start soon. Hair already starting to grow, kept at least 12 eyelashes throughout, entertained myself and my head with henna tattoos, head painting by my granddaughters, and I'm going to be a light bulb for Halloween. Having said that, bald was definately not fun.. more because I had to constantly remind myself that I was not sick, but felt I looked it, and that I was just doing preventative maintenance.Most concerning SE are weak legs, short of breath when I do much, and swollen ankles..but not always. These things began only in the last 3 sessions of chemo, and improved before the next round. Taking a little longer this time, and doc ordered a lung ct last week which came back good. Except in the process they saw 'something' on kidney, so now tests will be happening for that. Oy.
I'm more concerned about heart around the breathing/etc? Second muga scan showed heart had improved. I'll read more of what you've posted, pbrain.. thanks for sharing what you know.Oh, I also had mega mega steroids, benadryl and lipidene because I had allergic reactions to all three drugs. (carboplatin, doxatere and herceptin) They said I was special and the entertainment committee for everyone else. Ha! So, how much that's played havoc with my SE's who knows. Today I do my first herceptin on its own.. and no steroids, yay!.. the antihistamines, yes. But hoping I can get past that soon, too.
So, that's where I'm at. Am sending warm healing thoughts to all of you... you amazing bunch of women with quadruple positives.
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FeelingtheMaic--I don't rememer if we've met Welcome---u have entered a world of information from the most incredible and knowlegessble women (not me) I just try to understand what they're talking about. When u find groups that u are comfortssble with mark as u'r favorites and u can realky keep up with info and people and it gets to be so comfortable to come anytime and absorb their knowledge. This is an awful disease and if u can share it with people who get it it helps.
Sol I hope today finds u feelin better.
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feelingthemagic you are so sweet. Sounds like you're closer to the finish line. I really found I started to feel much better 5 weeks PFC. At 13 I was going topless. Granted I got shingles for 5 weeks about 2 months PFC but only a few of us get that. They saw something on my liver too. I was scanned for 2 years. Finally this fall they decided that was my last scan. Those lesions are just cysts nothing more. The inside of our bodies get "zits" too if you know what I mean. I also had the big angles swollen legs and tummy from chemo. It took me a bit longer than others to get rid of it so my onc gave my a small dose of diuretic. Then the anastrozole also made me retain (but not quite as bad as on chemo) so my PC put me back on it.
Have they started you on any hormone therapy yet? I started about 4-5 weeks after chemo
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So the sweet spot for DHA, from what I've been reading (and what was used in the double blind study in 2010) is 900mg a day.
My Fish oil has just a tad under 500.
Went to Walmart yesterday and picked up a bottle of DHA, and am supplementing the fish oil.
Guess I'll know in about 6 weeks....or maybe I won't know...lol.
I just want the mental edge back.
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Thank you, Feelingthemagic! I have found this board to be so uplifting and supportive. I can come on here and yammer about anything
Do you have a cardiologist? Sounds like you might just have a depressed left ventricular ejection fraction from the Herceptin. That would cause the shortness of breath and ankle swelling. You might just need a little cardiac rehab (exercise, even small amounts, will improve the function of the heart muscle) and maybe a diuretic?
Welcome!
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Sol- I like the hugs thing to...so for you (((Hugs)))).
This last chemo, I thought it was just me being set back physically that caused my depression. But perhaps the chemo drugs?? It hit about day 5-11. I just really couldn't shake it. I'm a Christian, so I just went into prayer and talked with family. I was really mourning the past me. And my mind was so heavy with regrets and what ifs. I finally moved out of it. Can the drugs cause that? It's a first for me because really, I am normally such a happy, joyful person. I mean I've had my days, but never ever like that. It was so hard to pull out of.
Welcome feel the magic. This is definitely home for me. These ladies are awesome! My second chemo is this Friday, and they all have been so supportive, caring and helpful.
Dance- I copied and pasted. Thanks for the info on correcting under eye circles/darkness.
And to everyone- I thinks it's amazing and really wonderful that no matter our beliefs, that we can come together and support one another through this journey. I'm so grateful for all of you. Okay....enough sentiment, or I will cry. And it seems I've done more of that since diagnosis than since I was a baby! Lol! Can't stop them at times. And I will be doing enough of that today at 1pm when the head gets shaved! Hairdresser was sick yesterday. But agreed to come to house today and get it done. We will both wear a mask to be on safe side.
Ok, enough yammering (as Pbrain calls it). Lol!0 -
feelingthemagic - welcome to you - on the Herceptin alone infusions some of us have experienced new hip/back/leg pain because the infusion was run in more quickly - when infused over 90 minutes, as mine was during the times I also received chemo, no problem. Also on the swollen ankles and shortness of breath - I had both but no issues with decreasing EF on echo - just SE from chemo and both dissipated in about 6 weeks PFC. The shortness of breath can also occur because your hemoglobin is low from chemo - as your red blood cells rebuild that SE usually goes away. The lightbulb thing - awesome!
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I so enjoy the intelligence of this group, I have nothing to add that's for sure--but I try to remember.
Anyone in the path of the storm please be safe and follow whatever u'r supposed to do.
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i am catching up on posts here. It seems like alot of people are having problems with herceptin -- the cardiomyopathy. This scares me. I currently have 8 left. The incidence of cardiomyopathy is about 1-2 percent. However, if you combine it with adrimycin/cytoxan that risk increases significantly. I had echo after herceptin number 7 and my EF remains at 60 percent. I will have another in December. I am a cardiac nurse so cardiomyopathy is very scary to me. I am trying to get back into exercising. I have been to pilates/yoga now for a couple weeks. I can't believe that just that little has helped me with Range of Motion all over my body. The first time i went i couldn't hardly bend over. I can't believe at 44 how that chemo still beat me up!! Glad it is behind me. I still have knee pain. I don't know if it chemo related/herceptin/tamoxifen/or if i hurt my knee. I sat on the couch yesterday with an ice pack on it knitting a scarf. I must say the ice really helped it. Hair is growing back black and gray. I colored it blonde before chemo however, everyone says it looks nice so i may just let it grow like this for awhile. I am just so darn happy to have hair. For those suffering from Peripheral Neuropathy from chemo - my cancer center is participating in research that shows cymbalta helps with that. That may help kill 2 birds with one stone. Cymbalta helps with pain/depression/and neuropathy.
Does anyone have any idea how long it takes for the swelling in your breast to go down after radiation? i completed radiation 3 weeks ago. I had lumpectomy in Feb. I saw my surgeon 2 weeks ago and i have a seroma. It is pretty big. She doesn't want to drain just yet because to close to completing radiation. Will address in Jan. My affected breast is about a D cup and my other is a C cup. i think it is still just inflammed. my MO said i have an internal sun burn. i can't find a bra that fits to save my life. I am wearing a Amoena Hanna for now or just some generic sports bras. Suggestions?
I also found just the small amount of exercise i have been doing has taken my heart rate down. I was running 88-92 a couple weeks ago, since i started exercising again it is down 78-80. During chemo i had resting heart rates around 100 all the time.
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cami you make us laugh and that is the best medicine!
ok, so this is day 14 post-op and i still feel like i have rocks bandaged to my chest. The pressure/tighness is still unbearable and i am taking percocets morning and night. They said to give it one more week - i am at my wits end. I don't know how i am going to get any relief.
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