TRIPLE POSITIVE GROUP
Comments
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Gratitude...yes we are here and actually DOING the work ourselves. (My husband built homes with his dad for years so REFUSES to pay anyone to do anything he can do himself. Which means I get the very best results, but it TAKES FOREVER!! He has a day job and is diligent to work on the remodel every single day.....but trim work can be tedious!
He's off today because of ALL THE SNOW. Lago! I bet you are covered in Chicago.
So back to work!
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Gratitude.....yes, strangely, I do! I was pretty sure I'd be devastated, but it actually does look nice. My husband used the word "cute". However, I think when my hair falls out, he will still say "you look cute". Just how he is. I was encouraged by Lago's pic actually because I think her hair and look is adorable.....so I went in hoping for the same result!
So the woman who cut my hair is probably my age (46-ish), and a cosmetologist who volunteers, which I think is absolutely wonderful. She is scheduled to have surgery for a (or more, I didn't pry) brain met soon. She nonchalantly offered the information up when I asked if she'd be at a program for BC women at the hospital next week? Had she said that to me two months ago, my reaction may have been that of stupidity....I may have gotten teary eyed, or my sympathy would have shown instantly. However, having been diagnosed Stage IV....it was as if she told me she was having a splinter removed. I am NOT suggesting this isn't a huge deal at all, it is, and I will be thinking and praying for her. What I am saying is that I have learned how to respond in a different say, since I may too be in her shoes one day. So, instead, I asked where she was going, how long in the hospital, etc. She had such a good attitude and said she was "paying it forward" by helping BC patients. I got a wig, although she tried it on me prior to having my hair cut, and I did indeed look like a conehead because all of my hair was still stuffed underneath. I have to say, it looked nice. It's made of real hair (which kinda freaked me a little bit....I don't know why...had surgery years ago and was treated to cadaver bone....freaked me too!) I tried on one wig, that I cannot get until my insurance approval is dealt with, and I have to say I looked better with it than I do my own hair!
I have been sleeping much better, though I'm not sure how. As soon as my eyes open though, I think oh yea, I still have stage IV. The lady who cut my hair said "do you know as Stage IV you automatically qualify for disability?"......Ugh. I didn't.
I hope you're all doing well. Like to read about the other women here who are getting back nice test results...that things are quiet, so to all of you.....congrats!
I was reading on a blog of a pancreatic cancer patient, which I stumbled upon because someone had asked me if I had a power port, and sadly.....I don't know. When things first started moving, I just did what I was told and didn't ask questions. Now, I am asking questions....lots of them....but whatever port I have, I have. I watched while he received chemo. He took pix of all of it. I had to look away when the nurse poked his chest. I just don't handle needles well at all.....and I feel very bad for people with tough to find veins who get poked over and over or in the strangest places. I don't fuss or squirm around, but I hold my breath and cry quietly while they poke at me. They find veins in some strange places to use....OUCH!
Anyway, to all of you ladies struggling to beat this beast, have a wonderful day. I am getting "used to" the idea of Stage IV, and find there are actually moments, not many but a few, where I forget I have it.
Warm wishes.....
Lynn
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Tonlee I haven't been out yet but it only looks like 4-5 inches in the city at most. No 10".
Lynn you are not the first who was inspired by my haircut. I does take some time for the bangs to grow back. It still looked good even when the bangs were shorter. I remember posting a picture from a few months after I went topless on facebook. Most folks on facebook at that time had no idea I had been diagnosed and treated. They all thought I went pixie for the summer.
OK off to get ready for this 1-day gig.
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Jlynn0807,
That is wonderful that you like your haircut and wig. I can't imagine putting 25 minutes into drying/styling my hair, as I once did. Plopping that pre-styled wig on my head has spoiled me in ways. . . and I get lots of compliments on it, to boot. The lady who cut your hair is to be commended for just getting out there and living. . . that is what all humans, regardless of health conditions ought to do, IMO. What is the point of fretting/worrying away time. I think we all realize how precious every second is. Re: POWER PORTS, I think such ports can be used for all injections, i.e., CT Scan dyes, Herceptin, etc., not just for chemo. I am attaching a link I used to help me decide on which short style might look good with my face shape. Hope it helps gals who are considering cutting their hair:
AlaskaAngel, thanks so much for sharing the info. Sometimes I feel we are guinea pigs, but we are all receiving the best possible treatments presently, and there is no point in going down the road of "What if this does not work? what if it does more harm than good?" The bottom line is that meta-analyses statistics of these treatments show great survival numbers, so let's be thankful and try to soldier on through SEs and worries. Not always easy, but the alternative might see us all in the looney bin
.TonLee. . . WOW!! Not only are you living through it as a family, but DH has a full-time job and then comes home and works. Commendable is an understatement for all those involved.
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There's a new Heart & Stroke TV ad that just grates on me. It says a Canadian will spend the last 10 years of life "in sickness". I've been boringly healthy until BC & osteopenia & I'm fighting for a helthy next two decades. I find the ad depressing but have purchased the H & S tickets.
Picture is my new greatgranddaughter. 8lb 10oz of sweetness.
cheers
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Hi everyone -- I posted it because I think for those who are for one reason or another trying to gauge the choices they are making (whether for initial therapy or otherwise), the information is one more aspect they can use to weigh their choices based on information as they go along.
Providers can only work with what they have to work with, and do their best with it. But it is too convenient for providers who are basically just following the general trends for practice to operate as if the recommendations for treatment are currently based on accurate measurement (as if testing is presently available that is accurate) when in fact that testing is not yet accurately being done.
Absence of menstruation is encouraging, but is not considered definitive of a low estrogen level. Where that becomes important is if one is trying to decide whether to seek ovarian ablation by chemical or surgical means in regard to lowering their estrogen level. The emphasis by the endocrine society is intended to improve upon the status quo by making it clear to the rest of medical practice that currently testing is not reliable, and that because of that, some people are not choosing therapy that is adequate and some are going overboard when they don't need to.
A.A.
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Yikes!
Doctor's office called. Got approval for chemo. Starting Friday am.
Pretty nervous/happy/excited/scared to death.....to get this moving!
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Suegr8...
CONGRATS....she's adorable. I've three boys, so a granddaughter would be nice!! Just not yet :0)
Enjoy her!!
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Hello, all! Just checking in. Been awhile since I posted. seems I am kinda taking a break from BCO right now. I hope all are doing well. Hello to anyone who is new and doesn't recognise my name, and much love to all.
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Hi Moon, good to see you
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Jlynn, I always forget my emla port cream when I go for infusions or Herceptin. It's not that bad, I truthfully felt it with the cream and still feel it without so I guess it doesn't matter so much that I forget it.
Gemini, I had no idea estrogen blockers are considered chemo??
Lago, your hair timeline inspired me to document my own. I spent some time the other night going through my pictures from the last few months and dating the ones that will eventually be part of my "Hairloss Highlight Reel" The good thing is that it's coming back and there WILL be a happy ending for my documentary!
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Jlynn, hooray on the approval! Onward and upward!
suegr8, your granddaughter is adorable! Congratulations!
moonflwr, always good to see you - I hope all is well.
steiner, I'm looking forward to seeing your hair progression photos and really happy to hear you have new hair coming in.
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For me, another treatment in the bag today. Two more to go. Time marches forward but oh so slowly (at times).
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Thankyou for your kind words about our little Stella. She is my greatgranddaughter - extra special.
cheers
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Bangs....took forever to regrow! And, I liked my wig styles better than my real hair too. Although I am wearing my hair now in a style that was similar to one of my wigs and a way that I have never worn it before. My hairdresser thinks I will never cut it again, lol. He just may be right. I let him trim and put some layers, but that is it.
Alaska.....I feel like I am zero. So, I figure zero times ten is still zero, lol. I have a full hormone panel once a year and like Lago, I have the estrogen of a prepubescent male, or something along those lines.
Lynn...what are they using with the Perjeta? Get frozen peas or bags of ice for your nails and toes to protect them. I agree with you on how you react now. When someone tells me, I am very sympathetic but much more matter of fact about what they are going through, what they will need, etc. I try to provide them with a checklist of sorts that they can use to prepare.
Sue....what a cutie patootie !0 -
This article is chock full of info on the various therapies for us Her2 ladies.
http://www.cancernetwork.com/conference-reports/mbcc2013/content/article/10165/21315760 -
The agenda for the Miami Breast CancerConference that starts today. Wish I could attend a few seminars! Click on agenda...can't get the link
http://www.gotoper.com/conferences/30th-Annual-Miami-Breast-Cancer-Conference0 -
Dear ashla,
Thank you very much for posting the article where Dr. Mark Peagram was interviewed regarding treatment developments for Her2+ gals and Her2+ and ER+ gals. It comforts me greatly to read about brilliant oncologists working diligently to improve treatment plans/find a cure!!! IMO for the few times I have viewed postings in the "Alternative Treatments" thread, there is so much suspicion and disrespect for the amazing discoveries and work men and women in the field of BC research are going. Again, thanks so much.
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Lee....thank you. Tomorrow is the BIG DAY. Told to bring some snacks, a drink or two, and will be stopping to pick up some books today. Although, I have a feeling I won't be able to focus well enough to comprehend anything I read. They have televisions, and wi-fi there. Have a mini I-pad I may throw in my "chemo bag" too. Ya never know what I'll want to do, so will bring it all. My DH is going with me. He's a pain in the arse sometimes, but most times, pretty good support with this stuff!
I see I am getting different chemo than you, but how are you holding up?
Lynn
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Lynn, I'm doing okay - thanks for asking. It's not a walk in the park but it is doable. I try to eat lots of protein and try to get a 30 minute walk in each day. The integrative physician at the cancer center where I go cited studies regarding walking and reduced recurrence rates so that's one of the motivators.
I take my iPad and play FreeCell quite a bit. I have an app that allows me to go in numerical order (yes, I am more than a bit OCD). That helps the time pass pretty easily - plus, there's an internet connection so I can browse the internet while there.
Good luck tomorrow!
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Good Luck Lynn I hope it all goes well.---When I went we had a buffet people just brought things and we all di and they have juice and milk and coffee. They made it not scary so I hope u have the same type of treatment wherever u'r going.
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Lee....good! I am sure you have "dark days". Sure I will too....but I just think that as crummy as I may feel, I will feel like I am doing something more aggressive. I know there are varying arguments regarding chemo, and not having it/having it. I guess it's an individual choice. For me personally, I was upset when told I was NOT getting it....so when my onc presented my case, and things got switched around to the Perjeta....I was thrilled. I will be less thrilled after it starts, no doubt, but I will cross that bridge...
Camille...I was given a tour of the facility. It looks very nice. Heated chemo seats and all. Worried re the port access...but I am a major baby when it comes to needles!! Labs first, and they told DH (who took the call) that they will only be poking me once in the lab, and that's it. Will see how it goes, and thank you :-)
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jlynn - they can draw labs from your port, then leave the set up for the Perjeta access. The good thing about most ports is that they are hard to see on yourself because they are somewhere on the chest, so it makes it harder to see the actual access - you can't look down because then your head is in the way for the nurse! Wishing you the best - I found that the anticipation was worse than the event. I started out looking like a bag lady coming to chemo but I realized that I didn't need half of the stuff I brought at first. You will be able to determine after a while what works.
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Thanks Special. Smiled at the "bag lady" comment. I'm already packed, and know full well I won't need all this junk!! I stayed up the entire night before one of my biopsies...the first actually. Left breast. I am hysterically afraid of needles (since childhood, long boring story). Anyway, I have to say, my flu shot hurt more than this biopsy did, and I found myself saying to the nurse "He's done? Are you kidding"....I didn't feel a thing. Point: You're right about the anticipation. It's killing me. But as I type this, I feel that burn and I want it to stop! Time to fight this as best I can.
Being here and reading helps, even the not so good stuff. A reality check. Small stuff...doesn't matter so much to me anymore!
Going out to eat....pre-chemo dinner....can't decide what I want either!!
Lynn
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Jlynn, good luck today. It's tiring, but you'll be glad to get home. The first visit is the longest. I found the SEs started on Sunday, my tx was Thursday. Up til then things weren't bad, bit of nausea. But stay ahead of that! If you feel at all queasy take something and dont be afraid to call your MOs office. I think it takes a while til the steroids wear off and thwart why.SEs don't always start right I will repeat what I am sure you have heard many times. Drink, drink, drink. To flush away the chemo. You will probably notice you smell like chemo, but it never bothered my cats. Good luck in the Big Girl Chair! (BGC) LOL
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Lynn, I don't use any numbing cream for the port access. The med tech who accessed it yesterday has me sit in a chair and then hold my breath and that's it. Needle in and away we go. So far - so good.
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Oh, but a word of caution! The infusion center I go to has reclining chairs (as I'm guessing most do) and when I went to get up to go the restroom yesterday the tubing got tangled in the reclining apparatus and kind of pulled on my port. From now on I will be mindful of that!
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I had my port flushed on Tuesday, put on the Emla late because I was at a PS appt prior to the onc. I paid close attention to how it felt because I wanted to be able to report - I am also instructed to inhale deeply and they access at the end of the inhale - I always just feel the pressure, not a sharp stick. I have a very small subclavian port - seriously small - if I didn't tell you that I have a port you would not know it is there - the nurses do a great job with it.
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Jlynn,
Good luck with your infusion tomorrow. Never had anything worse than a slight pinch with the power port access. Look the other way and breathe in. Didn't use any creams .
I apologize if I missed parts of the discussion but are you only getting Perjeta? In my very limited knowledge of the matter , I thought it was used in combo with Herceptin and docitaxel .
I hope your experience with infusions is as bearable or better than mine was. Hard to believe that sucha traumatic procedure could be described as mostly boring. I had never used it before but that benedryl stuff is great! Nearly fell asleep several times.
Wear comfy clothes and I used to take off my shoes and put on cozy socks!0 -
I didn't realize that you still have your port, SpecialK. I wish I had asked for a smaller one. Mine is subclavian as well (or I think it is?) and it really sticks out.
ETA: Maybe it isn't subclavian...it is below the clavicle?
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Lee, my port is below the clavicle, and it also sticks out!
JLynn, they should not need to stick you twice. Make sure that whomever takes the blood uses the port and keeps it accessible for chemo. My infusion center does it all at the same time.
I bring an ipod and earbuds, put it on LOUD and focus on the music before they stick me!! I also use emla creme. It really doesn't hurt...and I'm a chicken about needles also. You will feel pressure, but not a stick feeling.
Good luck tomorrow! If you are nervous (and who wouldn't be!!), take a xanax!! It helps.
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