TRIPLE POSITIVE GROUP
Comments
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I had emla creme. I wasn't too impressed. Many times I forgot to put it on (including the last time it was accessed). There were a couple of chemo nurses that were great at accessing my port, never felt a thing.
geminihalf I never heard of ESD (estrogen sucking drug) called chemo.
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Gemini I think most of our meds for after are with some type of chemo assiciation to it-I honestly never heard of people taking so many of these if they didn't have cancer. And for some reason we all react so differently with each one--I hope this is a better choice for u. I'm giving a lot of thought to changing my Aromasin to another one too. I wonder what difference it will be, if there is a difference. Just start taking it and tell me about it LOL Take the bulls by the horns.
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Good morning,
Cg....I do have a script for Valium....but I don't know if it works quite the same or as well as Xanax. Either way, my onc is pretty flexible. When I told him I wasn't sleeping, he didn't hesitate to prescribe Ambien. However, I felt weird the next day. Couldn't shake it off, and besides...I really found I kept waking anyway and it was an ER or CR tablet....12.5mg I think??
Also, I have a huge tube of Emla. I am a toughie, but have been tortured all of my life by drs and nurses with needles (unrelated to the bc)...and it's left me quite paranoid. It's funny...I've had this port in for almost 3 weeks now, and it's still sore. Plus, I have a very attractive "dirt hickey" on my neck. I wont peel off the skin glue that's over the incision (doc told me "hands off")....I am funny about touching the whole thing at all, it gives me the creeps....but I did manage to rub some soap over it in the shower and hoped that by letting the water run over it...it would look a little better. It doesn't. Decided I don't care so much. It is what it is. It's there to save my life. So be it.
Read up on the cold caps. APPALLED at how expensive they are to rent. That said, if I'm not getting a guarantee they work, I can't do it. My hair grows quick, although I know chemo can change everything. "Might work" at that cost...no way. My husband wouldn't care, but I sure do. I pay the bills every month though. Changes your perspective!!
Hoping everyone has a wonderful day!! As good as you can make it. This cancer thing is touch and go. I actually paid 5 or 6 bills yesterday, and considered it a major accomplishment. Sad but true. Figured I'd get the bills for month done before the chemo and I feel like crapola.
Lynn
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Lago.....I know that the volunteers accept the tears as part of the shock of being diagnosed, and throughout the whole "cancer journey" so to speak. I am doing better every day. Yesterday, I was out for about an hour and a half taking care of some errands....and that's huge for me. Finding people are freaking me out. Can't explain it. Or, maybe it's not them but my need to get back to the safety of my couch, this laptop, and the remote control. I would like to go out to dinner tonight with my hubby, which was supposed to happen last night...but I couldn't do it. I am learning not to promise him anything because I am not so good at keeping 'em lately (and by anything...I mean ANYTHING). Who wants THAT right now? Well, him....but tough.
Sorry ladies...just saying
So looking forward to my haircut today!! Tired of the length, and keep seeing women with short hair that is just adorable!0 -
Lee...
I was never a hat wearer, but told my husband I will be soon. See women toting about in the stores with baseball caps on, and they look cute. I believe I saw something in a magazine to wear on your head at night? I think seeing my without hair is really going to freak out my kids....(me too come to think of it) so I will try to avoid walking around the house without something on my head. I get to pick out a wig today, and then will come home and find one or two online. I checked out the company you mentioned in your post, and there were quite a few I would have no trouble wearing! Prices don't seem to be too bad either. Is there anywhere you (or anyone reading) have found to be the most reasonable in terms of wig pricing? A friend keeps telling me I should get a platinum blonde wig and "have at it". Of all things. To go from a brunette to a platinum blonde will be drawing even more attention to myself, which I do not want!
Oh, to Lago...forgot this...I'd used the Emla when I thought they'd be using my port for the iv insertion when I had my endoscopic biopsy....they didn't though..however, it seemed to numb up the area pretty well. Why don't you like it? Just curious.....
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jlynn - depending on how long your hair is you can have a hairpiece made from the part you cut off. I did this prior to chemo and it was the best money I spent. Here is the site: www.hatswithhair.com - I had the "underhair" made from my own 8" cut off ponytails - kind of like "Locks of Love" but for me instead. The woman who makes these can augment with human hair, or use synthetic. Also, if you get a prescription for a "cranial prosthesis" from your oncologist you can submit the wig cost (any wig, not just from the above site) for reimbursement to your insurance company, many of them cover at least part of the cost.
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P.S. to Lee...
what's a halo wig?
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Lyn I used the acrual cancer book for wig and hats and scarves--they were very reasonalbe. And I never wore hats or anything on my head, but after a while I got so used to it cuz I got different hats. And I did get a halo wig--It goes under a hat cuz it's elastic that u fit on u'r head and hanges down from just above u'r ears to see hair--they are short, or long so when u wear a hat u see hair there--curly, straight. any color. I did have 2 one was short hair and I liked that one best and close to my color--the hat covers the elastic band going around u'r head. Actually that book was the most reasonable wigs and head pieces I saw and nice too. Got different colors to match different things I also wore really cool earring to make it look better, cuz I did work the first 4 months before surgery-so I had to dress reasonably and I actually got compliments from complet strangers t work how cut my stuff was--they never mention or said anything about cancer. Which I liked.
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Shore1, thank you for your kind words. FWIW, for ladies who are new to this journey, I kept a journal of the entire ordeal, and I am really glad I did because I read some it yesterday, for the first time since my lumpectomy {May 28, 2012}, and it is amazing, all that has happened. I had forgotten lots of little details, and I think it is wonderful to keep a record of all the drugs involved in the process. Each time I had bloodwork done, I asked for a printed copy so I could track my WBC count and hemoglobin, esp., but I also tracked the enzymes being produced by my liver. As for taking narcotics, I was prescribed Percocet for bone/muscle pain, and I only took them when I was at my wit's end. I was prescribed 50, but I ended up taking 7 during a four-month period. That is not said to make anyone feel bad, it is just that like so many of you, I never even took an Advil or Tylenol before BC, and I was devastated that I would have to take other drugs, in addition to the chemo and Herceptin. The Percocet enabled me to sleep on nights when I was totally exhausted from pain. Each of us has a different pain tolerance, so my advice is listen to your body, don't suffer, no medals are awarded for being "tough." We are all INCREDIBLY tough women, nothing to prove to anyone, including ourselves.
Jlynn0807, I really did not feel brave when I finally shaved my head. Frankly, I was very fed up with having absolutely no control over any aspect of this disease, so to reduce my sorrow at having clumps come out, I said in my own head, "Hey, you can actually control this specific occurrence," and that is why I shaved my head. Again, I really did think I would be an absolute mess, but I was strangely calm. Re: wigs and caps and headcoverings, I looooooooooooooove my wig. I brought two friends with me to the wig salon. This was after I cut my long hair, but before I began to lose it. We actually had a very fun afternoon, and their input was invaluable. I have two sons, 16 and almost 14, and neither wanted EVER to see my bare head. MY MO explained to me that for them to see me with no hair scares them because we look ill/sick without our hair. I bought soft, knotted headpieces and I still wear them. I have enough hair now that I can go around the house and not freak out the boys, but the knotted, soft scarves, esp., have been a godsend. There was a wig salon in the hospital where I was treated, and that is also where I bought my scarves and two nice hats. Remember, one hour at a time, one day at a time, and feel the love and support from all of us to you and to all gals currently going through treatment.
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Jlynn0807 "I am a toughie, but have been tortured all of my life by drs and nurses with needles"
Well that cracked me up. My port surgeon put so much glue on when he first did my port I would swear he had a cousin that sells the stuff. Actually this last time when he removed it there wasn't even 1/2 as much. I'm thinking a resident put the glue on the first time. My port was sore for a while. Don't remember how long but I eventually got used to it. I didn't like the emla because I never felt it numbed me that much. I also didn't have a power port (not sure why) so when I had surgery or scans with die they used my foot. The scan people weren't to happy about that. I had to fight. I had nodes removed from both sides, LE on the left.I had mine in for 2 years. My onc prefers her early stagers keep it in for that long because there is a higher risk of recurrence in that time. After about 6 months or less I really didn't notice it. Don't assume you will feel like crapola. I did fine the first 4 treatments. After that I felt like crapola because things like stiffness, watery & flickering eyes, neuropathy, nail issues didn't go away. But I was still very functional all but maybe 2 days when my eyes were blurry.
I love my short hair. Not sure if I will ever grow it back. It's so easy. I'm 2+ years PFC. It would have all grown back by now if I let it.
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Quickie note:
So, my insurance covers a wig "prosthetic". What a stupid name. So, if it's called a "prosthetic" rather than a plain old wig, then it's covered. If my oncologist is ordering a wig, it stands to reason I'm not getting it because I want to switch it up from blonde to brunette every now and again. Politics!! Anyway, they gave me two places to call, one being Nordstroms?? Yes, that department store. The lady who answered the phone seemed totally puzzled, and I called back to ask if they even had a salon (what do I know). She said no. So I called the other number. No answer. No machine. Then, called my ins back, and they said if having no luck with local providers they gave me, my drs office could call and get authorization for an "out-of-network" provider. This took me an entire hour, start to finish.
What a waste of time. However, they did say there was no cap on how much I could spend. Only issue is that I have to pay the 20% of what they don't cover, so I wont be going overboard on this one. I'm afraid to open my mail lately with the bills that I'm seeing.
I've read a lot of you ladies had a surgeon put your port in. I didn't. The hospital's radiologist. I quietly wished her many different bad things while she tortured me, with seemingly no regard to the tears quietly slipping down my cheeks. I think, as someone else posted somewhere, she paid for the numbing agent herself out of her paycheck. BUT, the plus side is that under the dirty glue, there appears to be a very nicely healing scar on my neck, and chest. What it looks like when it comes out, if ever, I don't know. That said, I may not let 'em have it back because I will NOT go through getting it put back in. I'll just get used to it. Oh, and to you ladies who say it's sore for this period of time, I am sorry to tell you that my endoscopic surgeon said "It shouldn't be sore if you had it put in a week ago Lynn". Oh. Ok. How long did YOURS hurt then? The things they say.
Shower time, and then off to my haircut. My DH is home, he's going with. Not sure I want him there, but since I've been a little snippy lately, we're gonna go and if my panic disorder doesn't kick in, go out to eat!
sidebar to Lago....read what you posted re your foot, and I literally felt my stomach flop. Ugh!
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Well yesterday went well I was told my bone scan seems to be good as the last one I got last march at least that is what the tech person said although she said she is not the doc just waiting for results on my chest xray for lungs and my Muga is for tomorrow.
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Jlynn0807 Do you mean my weather predicting heel?
ang7894 Yay for normal scans.
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TonLee I keep forgetting to post this for you. I'm sure you can make it with much less or no sugar. I also air pop popcorn in a paper lunch bag in my microvewave instead of the old way described here.
makes about 8 cups
1/4 cup popcorn kernels
Vegetable oil
Fine salt (I would eliminate. Enough in peanut butter)
1/2 cup honey
1/3 cup sugar (I would reduce or eliminate)
1/2 cup peanut butter (should be free of added sugar)
1/2 teaspoon vanillaHave a clean paper shopping bag or oversized mixing bowl ready.
Pop the popcorn using your preferred method (air pop or in oil/pot).
Pour the popcorn into the paper bag or bowl to cool, and attempt to leave any unpopped kernels behind in the pan. (Coated with peanut butter caramel, the unpopped kernels are a serious tooth hazard). Lightly salt the popcorn to taste. (optional)
Mix the honey and sugar in a small saucepan and bring to a boil. Let it simmer for about 2 minutes, then remove from the heat and add the peanut butter. Stir vigorously until all the peanut butter is melted, then mix in the vanilla.
Immediately pour the peanut butter caramel over the popcorn and stir with a long-handled wooden spoon until it's all coated. Let cool for at least 10 minutes before serving.
Notes:
- This recipe will also cover one standard bag of microwave popcorn, so you can substitute that for the stovetop popcorn if you wish.
- This keeps well overnight. If you want the gooeyness of freshly made popcorn, though, warm a bowl of leftover popcorn in 15-second bursts in the microwave until slightly warm and soft.
- As noted in the comments, some people prefer adding something spicy, like Sriracha, in lieu of the vanilla.
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Lago...if that's the one they used to access your veins, then yes!! What we women go through. My husband cut himself with a very sharp knife slicing french bread the other day. I'm sure it hurt. It looks like it hurts. However, I am currently looking at him, and he is holding his hand to his chest like a baby. I wonder how he'd handle a port?
Got my hair cut, got a wig, and I'm ready to rock n roll. Woman who cut it is Stage IV, with brain mets
Surgery soon. So, when I say I'm lucky, sometimes......I realize I am!! Stage IV feels rather unlike lucky, but I've a "better"Stage IV than she does. She had such an upbeat attitude though!!Going out to eat with DH. Had to stop home and let my doggies out or I'd be there already!
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Jlynn....lots of notes. First, I loved the emla cream. I used it also when my PS did his fill injections. That really hurt. You will love your port also, so much better than wrecking your veins, especially when you have to get the stuff for a year.
I have mentioned this before, but I put myself into a panic disorder at diagnosis. Couldn't eat, sleep, cried all the time everytime someone looked at me, blood pressure escalated. A low level bp pill and Cymbalta worked wonders.
On hair, my chemo was taxol. I was glad that I didn't shave mine as it shed a fair amount, but I was almost through chemo before I have to resort to a wig round the clock. Then, three weeks after chemo, eyelashes, eyebrows and remaining hair all came out.
Lago...on one of the tamoxifen threads, there was a whole big discussion and argument about the AI's and T being chemotherapy. Apparently there are many links that list them all as chemotherapy drugs. I quit paying attention to it as I figured I had to take it anyway, so what difference did it make if it is or isn't.
One of the oncology nurses in my office views Herceptin as chemo, one doesn't. Go figure. One says follow neutropenic diet, the doc and the other one don't.
I think it is like we have mentioned before and like my NP friend says....if we went by how they labeled everything, no one would be taking anything. I was most recently griping about taking Prolia when I am switched over (even though density scan was normal, but had dropped since the past two years), about it causing side effects. she told me that some of the natural stuff would have side effects, and if I overloaded on calcium, my kidney stones would probably return, and if I tried to rely on weight bearing exercises that would be enough to make a difference, I would probably end up with pulled muscles or lympedema. LOL...so basically shut up and follow his orders. We will see.
My onc teaches yoga to his patients twice a week. Usually about 6 of us. Two of the women have a very different kind of cancer. One has some kind of bone one, and the other has a Leukemia of some kind.The one with leukemia has had a recurrence in her brain and is having chemo run into her brain somehow. (I don't want to know). I have begun to be grateful that if I I have to have something, at least it is something that has some treatments available that make a difference.
For my giving back, I have been trying to help others with avenues to get help, to give them some research, etc. One older lady who goes to my PS (she is 73, a little cranky, but very cute), is not a particular fan of her implants. She has been driving my PS crazy, lol, and wants them out. Honestly, I think she looks amazing, maybe better than mine. I told her she should get out a tank top and her best push up, stand proud and takes those girls for a spin. (She is divorced). She stopped me the other day and said due to my gentle teasing, she has rethought everything and is going to keep them and see if she adjusts. I promptly sent an email to my PS telling him I am available for consultations.
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Oh....and regarding the glue, I swear the glue was never coming off of my inscisions, but I was scared to touch it also. After six weeks, I was in the office for a fill and my PS said, are you ever going to wash off the glue, and started laughing. I told him I was afraid something would happen and didn't want to touch it. He removed it and said it was grossing him out.
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laughing at your post Fluff
My onc said, no matter how it tempts you, don't touch the skin glue. Well....ok...but my neck looks gross!! I have to say, I find I kinda don't really care what anyone says about it. It's funny, but it's there to save me, so I guess it being disgusting looking is alright w me. I did notice today it's a little smaller. Went to get my hair done and fitted for wig....a poster there for Locks of Love, and pix showing the kids the hair went to. Soooo.....shall I say perspective??0 -
Lynn, Hopefully, you had a power port put in! That can be used for lots of things, including some dyes for scans. I am not a "toughie"-- I am more of a chicken and a serial pain avoider!!! Thats why I recommend the emla creme. I also had them spray freeze spray on the area, until I because allergic to the spray.
My port hurt way more than I thought it would for at least 2 weeks--and it was put in by a thorasic surgeon. In some ways, it was more painful than recovering from the BMX. I just kept thinking...."this is such a small procedure and small device...how come it hurts so much!!!" I took some of the leftover pain meds from my BMX. It gradually got better, but the first few days, I was literally holding my foob on the side where the port was, because the weight of the expanders (which weren't heavy) was causing the port area to HURT!!! I still feel it now, and its been 6 months. Its not painful, but I still know its there.
That having been said, I am still glad I got it! I had weekly infusions for 19 weeks, and I'm getting infusions every 3 weeks till Sept. The port makes all the blood work and infusions easy.
Good luck!
PS I get what you are saying about being reluctant to touch it! Its like an alien device in my body. I hate the fact that it protrudes from my upper chest. Oh Well!!!!!
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Cg, my port went in during bmx, so I didn't notice it much with everything else. However, I had it removed when I finished herceptin, and had lipo with fat grafting. I swear the port area hurt more than the other two.
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And jlynn, ,I went to all the wig places in the bad areas of town. Scored a human hair one for $40. I loved it. Had a synthetic one I liked to that was $200 in the wig store and I found online for $75. Finally, I went to the look good, feel better, which is a great program by the way. Three people in the class....an older lady, gets a dark wig that looks exactly like her hair....an Asian girl, who gets one in an adorable Asian look and style....and me, who still has some hair, clearly blonde. She does not have a blond wig, so I get red, with auburn, a Raquel Welch one that is short and spiky cut, very dramatic.
My friend and I were the only people that thought it was fun. She said I looked feisty. I wore it in Hilton Head with them, much to my husbands dismay. Said he thought he was dating a different woman, lol.
When my family went along to look at a wig I liked ( because I really wanted a Farrah fawcett, long curly shag), it took. All they had note to blow up laughing. They were still paranoid I would melt down on them, so they were all trying to be polite. Finally my daughter just stepped in and said "ummmm, no, you are not wearing that in public." Then we all started laughing. I look back at a picture and looked ridiculous.
But I always wanted that kind of hair.0 -
Lago, two things.
I haven't forgotten you! We are in the middle of a remodel so I am going to try and work up something for home workout as soon as I can.
Second, that popcorn sounds AWESOME!! I'd use nut butter (love almond and since there isn't a single additive, a pinch of sea salt!), sucanat instead of white sugar, virgin coconut oil instead of vegetable, (did you know that years ago they used coconut oil in popcorn at the cinema?....but yum! I am having people over Friday night...think I'll make it and drizzle dark chocolate on it!
Thanks!
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TonLee I knew you'd love it.I like the idea of adding chocolate. I found it on pinterest.
Don't worry I know you'll get around to it. We all do have lives outside the forum. I'll be working onsite freelance tomorrow all day anyway. Also did my full routine strength training today so I won't be doing any again till Friday the earliest.
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Ang7894,
Glad to read that your bone scan is clear. Great news!
Fluffqueen01, your telling the 73 year old lady that her implants are awesome was hilarious . . . and very kind of you. You obviously made her day.
Jlynn0807, you got your hair cut. Well done!! Do you like it? I hope you do. I actually liked it when I got it cut, which shocked me. I may be in lago's camp and never grow it out long. I will have to see.
Re: PORT pain, honestly, it was hideous for me (felt like two steak knives had been plunged into my chest for the first 5 days), and my PORT device was not 100% sealed so the incision never knit together properly. . . ever!! Every time I had chemo it leaked, corroding my skin. Letting you all know in the event your incision does not knit together. The docs finally figured out the problem, and I had to have it removed. It was removed from my chest on Dec., 21, 2012; I had it inserted on September 4, 2012.
TonLee, we lived through a five-month renovation in 2007, so I feel your pain. Are you living in your home, or have you moved to another residence for now?? In retrospect, we should have done that, but . . . we were too cheap
. It turned out beautifully, however, so well worth the inconvenience, that's for sure.Re: my lunch today with a lady with whom I once worked with at my school, a myriad of emotions were felt/expressed by both of us. She was reserved, initially, but then she began sobbing, quasi-hysterical. I listened, stayed calm, told her when I was first told, on the drive home, I screamed at God, at the top of my lungs (yep, swear words were used. . . not a nice way to address God, but I think He understood) for about 10 minutes. I had to get it out before I got home. I went to that appt., alone, thinking it was no big deal. WRONGO!! I told her to never go to any info., meetings alone, ever. I will gladly go with her. She is encouraged by how healthy I look. I told her that, for me, music, movement, exercise and dance were, and continue to be, very important for my mental, emotional and physical well-being. We are getting together in two weeks' time. Least I can do.
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Gratitude,
My port was also put in on Sept. 4, 2012! It must have been port day!!
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Wow busy, busy, busy--U gals who give of ur'self to others is wonderful--if u can make one person feel better and take things better it's great. U r really paying it forward and Lago u do so much u'r schedule is full.
I'm sorry u had bad experiences with u'r port mine is still hangin in there and used wuite often so I never had trouble with it (so far)
Ang good scans ---GREAT
And the popcorn sounds yummy--good thing to make for a party too.--something different.
And Locks of Love is so sweet my sisters 3 granddgtrs-let their hair grow and have it cut eery year and donate to that I think that's so sweet 2 are 11 and 1 is 13-so their hair grows fast. And it's good to get u'r wig and hats and whatever before so u'r all set when it's time. And I keep my hair short now it's much easier.
I'm so mixed up today everyone was home and i thought today was Saturday now I have to readjust my whole week. Like I'm so busy.
My evening was perfect for me my GS cuddled on one side of me and we talked about life and things for an hour and my Katie Kat was on the other side and listened to us--so for me that was perfect. And they both know they have to be in the right place for my comfort too. LOL
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camillegal, that does sound like a perfect evening!
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Because this thread is so specifically in regard to HR+'s, I think this very current news item is worth posting here for consideration and discussion:
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Hi Alaska Angel! Miss you!!
So what I got from the article after skimming it, the current tests for estrogen are not accurate, and the one that IS accurate is highly expensive. The Endocrine Soc. is asking for better tests?
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Thanks AA. I'm not worried about the tests they did on me the first 5 months on Anastrozole because: 1. I never got my period back, 2. I have, although minor SE from the Anastrozole, 3. I can see the typical/normal effects menopause has had on my body.
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