TRIPLE POSITIVE GROUP
Comments
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I don't think there is an issue with posting the various plans each candidate presented… it's argueing about the politics that's the issue.
Tori I only had 1 MUGA before treatment and that's it. Who knows, my heart might be f'd up and I don't even know it.
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Thanks everyone. Makes me feel better to know I'm being followed properly. I still need to call and get results of my baseline echo......or wait till my next chemo when I see the doc.
Today is day 14 post first chemo.....I'm beginning a light shed of hair. Just noticing on my clothes a little more. Tad emotional. I know it's just hair....blah! I hate cancer!
. I'm going to turn this around though, and go enjoy this day since its a feel symptom free day, and make the most of it. Catching some strong winds from Tropical storm Sandy and overcast...not rained yet. The ocean is rocking though! 0 -
MsTori when it starts it will really start. I was exactly 15 days. I think it was all gone in less than 2 weeks… but I did go out on that windy day. I'm sure I mentioned that funny story earlier.
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I think my hair really started coming out at 17 days so I shaved it. I had wigs, lots of them in preparation...but honestly, One of the best things I owned was a thing called hat hair!
A lot of wigs just have that fake look at the hair line, even expensive ones....with hat hair you wear a hat (so no hair line!) and it comes forward far enough on the temples to cover the tell-tale sign of chemo baldness....the hair in front of the ear missing...
Also, it's SO MUCH cooler and less itchy than a wig.....
I lived in my hat hair when I went to the gym. It was long like in the pic above....so I put it in a low side pony tail...gathered just under the left ear.
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Ms. Tori- my hair started to go about day 14 I decided that I wanted to be in control of something since it seemed cancer was taking over. So I made an appointment at my salon before it opened took my girlfriends with me and a few bottles of champagne and had mimosas! We toasted the hair goodbye and they each took a turn doing a bit of the shave and the my hairdresser made sure to make it all even. It was actually one of the best memories I have had of late since my DX. If you are up for it have some fun with it.
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I never shaved mine. I just vacuumed my pillow and bathroom every morning for 1-2 weeks
I think my husband was enjoying watching the process of me losing hair… slowly unveiling my head. I have a lot of hair so it took a while to all come out. So much hair that even I was surprised (and disappointed) at the shape of my head. I really wanted to do the Sinead O'conner look but no go for me.
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Solt,
I am so happy your tests have come back with positive results...and no damage...
I have no idea what a myocardial infraction is...but will likely look it up now!
Keep me posted. I'm curious to know if you are aware of any damage (by how you feel) before the tests show it. Does that make sense? Of course I hope you never have it!
I wonder why some women can "feel" it, and others can't.
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TonLee I had the same type of hair piece and I'd wear it with a hat that could be pulled down--only mine had some curl on the bottom--usually with a knit type of hat and of course my big ole earring and sometimes a pin in the hat to match the earrings. I used that in the winter timenot when it was warm. And I wore a night cap, my cousin got it for me and I laughed so hard and she said wait til it's really cold u'r will be too, and mine was and I wore that thing. Something I hadn't thought of.
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Cami,
I loaned my hat hair to my cousin during her tx.
I still have it. Just in case.
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Um, I think we broke BCO...lol
(At least on my computer...it's all wonky)
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Tonlee it looks like you did it
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Guilty.
I think it's scared because I'm getting ready to talk about sex again! lol With pictures! Stand by....
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Yay Cancer Porn. Sounds like fun.
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So the JU JU came today....here are some pics of what it looks like....I'm assuming since the bag is fairly dark they should be kept out of light.
So it says put fingers on #8 and insert to fingertips....
Two things I like already. It's not much...I was seeing yeast infection amounts in my head! Ick. And it's tiny...woot!
I will report back with results if and when I have any
(Without pics of course 
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Thanks everyone! I'm not sure how I'm going to do this yet with the hair. Lago- lol! I was holding on to it today when I went out. Thinking....great! Watch a bunch of it fly away! Nope, still here. Scalp a little itchy/tingly. Tonlee- that hat hair looks cool! I have to go try on wigs after its gone. I don't want to go in and try on wigs and have it start coming out. Lol!
Yeah, think the board is all wacked out from all the hot topics lately. :-)0 -
Hope it works for you
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MsTori, I had almost the same thing, a set of Bangs for a hat. They were wide enough to swing by my ears, and cover my forhead. My hairffresser cut the to fit. Some of the hats have velcro in front to attatch the bangs. I also had a scarf liner with the velcro to go under any hat or scarf. It was comfortable, and no one ever knew it wasn't my hair. Also, it was about $15, from TLC's catalog.
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Lago, I have a cardiology background and will tell you one thing--if your heart is f'd up, you'd know it. ;-)
I'm surprised though that they weren't monitoring your cardiac contractility during your herceptin treatment. Guess you did fine though, because if it was affected, you'd know it. The heart isn't shy.
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TonLee, keep us posted on the JuJu. You crack me up!
To everyone--when they are doing an echo, what they are looking at is the actual muscular activity of the heart (through sonogram). They look at how wide the atria and ventricles can open to fill and how much they can contract to squeeze the blood out (to either the lungs or the rest of the body). The actual filling and ejection of the left ventricle is very critical (although all chambers of the heart are, in their own way) because it pushes the blood out to the arteries that supply the body.
If the muscle can no longer contract or fill, the echo will show that. Your symptoms will be shortness of breath, swelling in the ankles, rales on aspiration (fluid in the lungs), water retention etc, all pretty non-specific because they can be caused by other things too like anemia. The body compensates (especially the kidneys) and we usually don't feel it happening in the early stages. But if your echo shows that the ejection fraction has dropped too low, they'll stop the Herceptin to let it get back up again. During all of this exercise helps the heart a ton, but it may feel harder. You may feel winded more easily. The heart knows how to recover until it gets too bad, so keep going but know your limits. It isn't permanent so keep the faith.
A bad left ventricular ejection fraction is anything below ~40%. That is where you may start to feel the symptoms. If it is just going from 60% to 50%, they will just watch you, and you shouldn't feel anything (this is called compensation). If it goes below 40-ish, they will want to give you a herceptin vacation.
Echos are subjective because the ejection fraction is read by a cardiologist. They estimate how much the ventricle filled with and how much it was able to eject. So a difference of like 5% or so is usually just within human error. I used to watch the residents in my department read echos and sometimes it would be 11 p.m. and they'd be falling asleep at the computer.
EKGs measure the electrical activity of the heart. A myocardial infarction is a heart attack, or stoppage of blood flow to the heart muscle. If this happens silently (small so no symptoms) which is common in women, it may be seen on an EKG later on. Many times it just shows that it happened and was small and was not a big deal. But when you have this diagnosis, really think about motivating yourself to exercise with the advice of your doctor. It helps.
You ladies are all so inspiring! I got my hair chopped off today and dyed a Joan Jett black. Now if I go out on the windy prairie 14 days after my first chemo, I can know that I won't miss it. I haven't been this short since being a child and it feels fun and free! My hairdresser gave me a free tin of her favorite pomade. We both had a blast just being fun and creative. :-)
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Pbrain,
Actually lower EF from Herceptin is often asymptomatic until it takes the EF below 50, which is why they monitor the heart and don't wait for women to have "symptoms." Herceptin can damage your EF but your EF still be considered "normal." (Though not normal for you.)
Some women DO have symptoms, but not all.
While taking chemo it is often difficult to differentiate between chemo SEs and Herceptin damage.
My Cardiologist told me that one of the big red flags for low EF AFTER chemo is leg swelling, calves or thighs. (That was one of my symptoms.)
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Lago, Sol, and Moon- thank you! I think I am going to have fun with the whole wig/hairpiece thing. My best friend is getting married next May and I'm in the wedding party.....hoping to have enough hair by then. But for her bachelorette, she is going to have everyone go out in a wig. Lol!
Pbrain- interesting info on echo's. Thank you. And I think when it comes down to the shaving, I will play with it. ;-)0 -
Yeap, definitely TonLee. My first echo ever was about 6 years ago to rule out a pre-diagnosed mitral valve prolapse (that was the hot diagnosis when I was in my late 20's, and I didn't actually have it after rounds and rounds of antibiotics and yeast infections during all of my dental work, I kept Monostat in business). I had an LVEF of 59% (no MVP) and was actually kind of alarmed by that after all my many years of swimming competatively and then as exercise and relaxation.
But interestingly, from my experience in cardiovascular research, ejection fractions don't always correlate with symptoms in heart failure because the body compensates (until it can't anymore). What is normally considered heart failure is an LVEF of below 40%, but some study subjects are out playing tennis at 20% while others are laying in bed at 35%.
However, because I am still beginning this journey, I do bow to your knowledge and experience since I don't know where the oncologists start to worry.
I feel clueless about cancer! But I know I'm going to be learning as I go. I have good cardiolgist friends who keep telling me be brave about Herceptin, be wary of radiation because that damages the vessels in ways they can't fix.
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Back on the mammogram age topic, I hauled my 22 year old daughter into my BS, to do a check and talk with her about what to watch for etch. I hoped she would order a mammo for a baseline. She did a manual exam, but said the general rule for daughters of BC moms is a first mammo 15 years before diagnosis. So she said to start at 40, since I was 55. Also, she referenced the concern that they are wondering if all the mammals they have been giving yearly could have an impact.
Regarding herceptin and heart, my onc would not have stopped it unless I dropped under 50. I started at 65 and my lowest echo was 50-55. It was the one at 9 months. I have had them every 3months. At three months after finishing herceptin, I was 55-60, and at six months, 60-65. I have been pretty inactive aerobic ally since my fat grafting surgery at the end of September and plan to get back on it when I get back from Thailand.
Pbrain, my node scar area was really sore also. I had 2 removed. You can barely see the incision line now, but it is hard to shave over.
I love the hat hair. I bought a long extension at Sally's and created something similar. I put Velcro on the edge and then changed it up in different hats.0 -
Lots of great cardio info Pbrain and Tonlee...although my EF seems to have maintained I have a feeling I may very well face some cardio issues down the line. Let's see if all the new research on the longterm effects will result in better longterm monitoring for us.
Question...I'm on anastrozole for 3 mos now and just got a refill from a different pharmacy and the bottle is different. Cannot seem to locate the manufacturer on either bottle. Is it possible that I have more noticible SE's with a different manufacturer? Or do you tink the se's are just kicking in now? My MO says they watch you carefully for the first 6 mos.
Keep forgetting to tell you who follow...I have always had stick straight fine hair. Now 9mos PFC..I have very wavy almost curly relatively thick approx 3 inch hair! The color is basically the same as pre chemo. Have no idea if it will stay this way and I have no idea how to handle it.. So far the best way seems to air dry and fluff! Bizarro!0 -
PBrain,
This is a journey, we're ALL learning as we go....I personally am very excited to have someone so versed in heart care (YOU!) on this board. So please, share, share, share.
Often times I will think I have a handle on some information, then it changes, or I didn't understand it right the first time. I expect the women here to step in and offer additiona info to help clarify when this occurs....that's what I try to do..
So please! Share your experience!
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Solt,
I never wore a holter. The MUGA showed a significant drop, so I had an echo to make sure there was nothing else going on...MUGA vs ECHO?
It is my understanding from my experience, my cousin's, and the Cardiologist that MUGA's are the gold standard for LVEF. However, Echos give more overall heart information.
For instance, my cousin's MUGA was 80%..and because it was so "inflated" (higher than when she started and she was having symptoms) they did an ECHO and she wore a holter. THAT showed the extra heart beats (which made the MUGA artificially high) and the skipped beats. So in her instance, the ECHO was more informative. In mine, the Echo told me nothing more than the MUGA.
Does that make sense?
Since you are getting BOTH, lol, I think you're covered.
Don't be so tuff on yourself about working out stamina during chemo. I've read a lot on fitness during chemo, and the very fittest athlete can expect a 50% drop in performance.
I was in tx with women who stopped everything...they literally laid on the couch for 6 months.
At my last Herceptin, which was 3 months later, they were struggling with extra weight and STILL winded walking down the hall.
I think it's one of those things that you use or lose. If you can't "work out" just walk around the house, run the sweeper...lol. Anything that gets the muscles moving.
I liken it to pregnancy in a way. Women who continue to exercise when preggers tend to get their "old" body back faster.
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Ashla - My hair came in thick and curly too and it was straight/slightly wavy before. After about 2 years all the curl was trimmed away and now it's still thicker than it was but back to my old color and straightish again. Mine came in with more white than normal and that's gone now.
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Sol-yes, they are pretty awesome. :-) I am blessed with some pretty amazing family and friends.
So, I knew this was coming. And I've even been able to maintain a pretty brave front. But in the shower this morning, clumps of hair started coming out. Different when it actually starts happening. And I know it's just so superficial. I called my hairdresser (crying), and asked if she could come shave it. Told her just one more thing the cancer is taking. Her response was, 'but it can't take your spirit'. I've known her for 7 years and love her dearly. So, she is coming over tomorrow morning and its head shaving day. Going to take it down to an inch or so..0 -
Ms Tori you are right on schedule. It sucks. You'll find there are a few positives. I know I saved at least 30 minutes not having to blow dry and style my hair. Granted I did waste time trying to figure out what scarf matched with my clothes. Also all the hair comes out. So no more wasting time and money on shaving. Oh and since TonLee brought up chemo porn… you also get a free Brazilian for several months. My husband seemed to like that.
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