TRIPLE POSITIVE GROUP
Comments
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Yay Nicky!
Pbrain. Dont know about you girl....ouch. 9 staples? Well we do know you throw yourself into what you are doing so thoroughly and so hard, that it doesn't surprise us that 1 or 2 wasnt enough for you! LOL But it sucks they had to cut your hair. Man add insult to injury!
as for pinktober, my bad mammograms and US was in Oct. So that didnt help. Neither did my friend who while I was in the hospital from my BMX bought me a gift of pink gloves and hat.... LOL at least the store she bought them from actually donates to the ACS. And they support local people. Kohls is the store that donated the 100$ gas card for chemo. So I cant fault them. They give the help people need on a local level. But there are way too many pink purses,blankets, baskets, and sucker spinners in pink ribbons. And yes I actually did see a pink ribbon sucker spinner.... LOL and no, it probably wasnt liscensed!! LOL0 -
On the subject of Pinktober (or as grannydukes on the Pinktober thread calls it - Focktober) my USPS mail delivery lady just brought me a certified letter from the dermatologist that I had to sign for - biopsy results - she asked me why they send it certified. I replied that it must be that at some point a person with a malignant biopsy result never got the word - the message on the answering machine never got to them, or someone answering the phone never relayed the message, and there was a resulting issue, so now they do it by certified letter. I had three biopsies on my upper back last week - all three are basal cell carcinomas - which I expected, so will be going back in a couple of weeks to deal with them. The good news is that my consult from this week on the suspicious spot on my lower eyelid has become a "watch and wait" for the next thre months. Yay! The biopsy for that is done in the operating room! Eek! Anyway, we started talking and BC came up, and so I "educated" her about pinkwashing - poor lady! She thanked me and told me she had no idea and I had changed the way she thought about the whole thing. It isn't even October (Focktober!) yet .....
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pbrain,maybe you could go for halloween, as a patient from a hospital turned - zombie! zombies are so much fun, when they arent real! you are looking great, i keep meaning to tell you, since you changed your avatar! cmon, show us the staples.. yowch!! ok everyone. heres aquestion. i did tch, and i just did my 14th herceptin yesterday. they had to stop me on it for awhile, cause of my ejection fraction. thing is, under both tests, i was equivocal for her2. but they said they would like me to do it. i said okay. doesnt everyone get 18? that was my impression, anyway. so yesterday, one nurse said my schedule said 7 more. another nurse for my mo said 5. wtf? even @ 18, which seems like the normal protocol, that would mean 4 left. poor infusion nurse, i made her let me see my chart to count them. she didnt want to, n i said that was MY medical info, n i have a right to know. as you can see, i have been problematical for them, ask too many questions, n have frankly pissed them off, not recently, tho. sooo, does it seem strange to get that many when i am equivocal. is this a test they are running without my permish? am i getting paranoid? onc will not answer. plus, without retesting, my med papers seem to have morphed into her2+, and their are so many other mistakes its unbelievable.
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kathec - some of us got 17, some 18 - I got 17. My onc's P.A. also made a calculation error based on when she thought I started chemo - forgetting I had a 2 month delay, so she appeared to be shorting me on Herceptin. I am Her2+++, so I wanted it all! Anyway, I had her go back and check my start date and then she corrected the error. My onc's office does the calculating by computer program and she had entered my start date with consult, assuming I had started chemo immediately. I am wondering if your intermediate stoppage has messed with their count if they have the same kind of computer program as my onc does. I doubt they are really going to give you more than the standard - particularly without telling you, I think they just have screwed up the start date. As far as listing you as Her2+, I am wondering if they had to do that in order for your Herceptin to be paid for. If you were listed as Her2-, insurance would refuse it as not needed.
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I Hate pinktober
Why do I want to be reminded the whole month of what I went through. Yes we need awareness but for some of us we just can't handle it as it is. Now we get this thrown in our face each year.. Don't get me started either.... lol
Literally HATE PINK...
P.S. Some people do mean well though.
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I think pinktober causes breast cancer.
NickyJ - That's incredible!!
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o, thank you, specialk, that does make sense! whew. and i really dont mind taking it, as i know it helps, and i really dont want to do this again, anytime soon! plus my heart really has come back up, the guy who did the echo said it was near perfect. will get the #'s on paper next time i go there. its funny, but i never really liked pink when i was a girl, but it looks good on me with my skin, need all the help i can get there! so i do wear it in small doses. i was thinking of going to an event just to meet someone there with bc....maybe a new lunch friend, someone to talk to face to face. cant stand the localbc support group, altho did meet several great women there, who just have very busy good strong lives! Yay! not like me i am taking some time to take care of stuff around the house, yardwork, catching up to stuff and making things. next big thing is christmas, and i better start early this year, have lots of people to thank....
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Miss SpecialK...love your last pick of your son!
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Pbrain, I can't believe they had to shave part of your newly grown hair! On the bright side at least it happened after chemo, so you aren't totally bald with staples in your head! Seriously though, I am sorry that this happened to you and hope your head feels better soon and heals quickly.
I am also not a fan of Pinktober and the bombardment of all the pink crap in the stores. I actually try to buy things without the pink advertising, though it can be a little tough this time of year. It is sad that BC has become big business, but I will spare you and not get on my soapbox. I was dx'd again a year and 2 weeks ago, so just in time for the pink onslaught and the unending calls asking for donations. I have never even heard of most of the organizations calling.
On another note I just got back from a business/vacation trip and was reminded again how much we as women can be defined by our hair or lack thereof. (mine is about an inch long) The trip was to South Carolina and the business part of it was at a beach resort. Because it was still warm I chose not to wear my wig to the beach or the pool, I just wore my white ballcap. It was surprising that people I met at dinner the night before (wearing my wig), had no idea who I was the next day (no wig) when I saw them around the resort. Even when I was with my husband, who they knew. I found that I confused a lot of people and had to reintroduce myself and explain myself a lot. Most people were gracious and apologetic but I can't wait for this hair to get to a length that can be styled into an intentional looking pixie!
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Kathec, I think the zombie idea is brilliant!! And Special, I meant to tell you that your son is a cutie, but I spaced. Too many staples in the skull. I bet he's a lady killer now!
So why does everyone assume we like pink, want pink, want to adorn ourselves in ribbons? I mean it is sweet but after my diagnosis, pink flooded my home. Mugs, hats, scarves, ribbons everywhere. I like pink in a sophistocated way, not doofusy glitter-strewn pink ribbon sweatshirts...sigh.
But on a happier note, there are stats out there about strides in disease treatment and recurrence. What I've read is that the three biggies that have really been affected by research and development are cardiovascular disease, HIV and breast cancer. I don't think all the companies that participate in pinktober are legit, but a lot of them are. Without that funding, we wouldn't have herceptin today. Someone had to keep that lab going while they worked on the hypothesis. I just wish we could do more to promote the groups that really do finance research and shut down the ones that just want to jump in on the hype.
Kathec, as I calculate it, I'm on herceptin 23. I had one TCH with herceptin, 12 weekly taxols with herceptin and am now almost to the end of the treatment with my every 3 week dose. However, they do make up the time lost when we went on herceptin vacation, so I'm not totally done until December. I say bring it. The more I get, the better I feel about what I've done.
And thanks so much for the sweet compliment. That is actually me in my wig, during treatment, but before I became totally anemic and goulish looking!
Bren, I'm with you on the hair. It really is so much more than a secondary sexual characteristic. It is kind of our identity in a way. It takes a little while, but people will soon start telling you how they love your chic haircut!
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Pbrain, so sorry about your fall but happy to know that you will be okay. Know you hated to lose that newly grown out hair. Speaking of hair, my hair has always been blonde and in later years thanks to hair color. Now that it has grown out, it is brown but not a pretty brown. It is that drab color that once blonde people get as they age. My husband and friends tell me they like it but I am not accustomed to this drab color. Kind of like it short though and may keep it that way. Hair is such an important part of our image of ourselves...a major one. I am just happy to have hair once again. It has been wonderful losing the wig.
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Miss PBrainWithTheHurtHead....OMG I hope you heal fast my friend...ouch
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Pbrain, did they switch you to herceptin every three weeks after your other chemo? Because then you count three weekly herceptin as 1. Ie 6 TCH with weekly herceptin equal 18 tx but only 6 of the tri weekly tx. So 12 tri weekly tx left after the main tx. That equals a year of tx. Was that confusing as mud? Same amount given but when you are doing chemo they usually give you a lower dose during the chemo.
And regarding hair as identity, my niece was told by one of her patients that she had a sex change and wasnt really a woman. My niece is 6'2" wears size 11 shoes. I watched her grow up and she has 3 kids, so he is quite wrong. But she just had to laugh. Guess she just looks like a tranny. LOL0 -
I'm about to give up! I couldn't take chemo again last week due to infection.. then I took chemo today didn't take steroids and had hives, throbbing back, sob, itching...they had to stoptaxol after one he so only got 20cc I see doctor Friday again! I don't know what to do....Its my fault but I gained 10 pounds already on these pills! Thought I could do without now I have to tell doctor cuz he wants to change the meds....all BC f this
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I wonder if this spreads while they skip these treatments
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pbrain - My son was a cutie, and you are right - now he is all grown up and a lady killer! He has those big blue eyes, is 6'3" and a fireman/EMT - gotta love a man in uniform! This pic is of both my kids the way they look now!
moon - LOL on your comment abut your niece - good thing I was not drinking my drink when I read that!
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Anyone ever get taxotere instead of taxol in here? Do they work the same?
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goutlaw - many of us did, you can see the chemotherapeutic agents we have been on if you lok at the signature lines - both drugs are taxanes, and work the same but have differing side effects. Did you have a specific question about Taxotere?
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Miss SpecialK.......beautiful children!
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Thanks! I think so too, but I am extremely biased!
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Holy chit am I behind.
Twinmama I'm sorry this chemo is so hard on u --some have crazy SE's and a few lucky ones don't have many But most have a lot ofSE's that u mentioned --u almost feel out of body and someone is in a sense torturing u. I personally liked the steroids and benedryl--Loved them actually, but when it wears off it can smack u rightt in the head and every part of u'r body and u wonder WTF is going on. U have to tell u'r Dr. all the SE's so if there is something they can help u with they will, be honest. It took me over a yr. to realize that when they were asking me how I felt they weren't just being polite, they wanted to know, cuz I always said fine being polite back--til my sister told me how stupid I am==so I'm giving u advice--never say fine tell them, if u are on the 3 week and u really feel bad call them.
Goutlaw I'm sure u'r Dr. will come up with another plan, don't worry about it spreading now they will have everything under control--not everyone can take protocol chemo--it can vary.
Stapled PBrain--this is not u'r fault--it has to do with ro much gravity it can be a curse, but u have to be hurting OMG u did all that stuff before u went to ER--smart woman--the only thing I ever do is take a shower.Did u go to work then> I hope u got to stay home, but u probably went after all what a little hair between co=workers.
Special K u kids are beautiful like you--u were always beautiful--I tend to dislike u momentarily--OK the feeling is gone, I like u again.
And all this October funky stuff--it's really to much because so many business cash in on it and give a penny on the $ to it and they can say for BC. And now we get closer to it I cringe but sonce I have hair now but concave I wear plenty of cover up types of thing so u really can't see it well maybe u can but at my age who's realy looking. And if they really are looking they so belong in jail.
I had Herceptin weekly for one year. Of course there were stops due to a couple of operations, but everything was well documented in the computer and it came out right, but it seemed forever because of the stops so I went a few months passed chemo-but I never had a stop do to the heart thing it stayed at 70 all the time, which at the time I thought was bad cuz 70 was just barely passing in school but I was told U'r way passed school so get over it. OK I came out of the dark ages and was fine.
Now of course I'm a mixed bag of chit more Drs. more tests, more meds then ever before so I;m plugging along, I thik I'll go back to the dark ages.
I've really been going on and on but whenever I take my pain meds for a short time I have this goofy feeling of talking so u guys got stuck with me tonight.
If u'r getting chemo drink loads of water, rest when u can, and move when u can, and if u have someone to help u==LET THEM.
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Specialk, I ditto chickaD. Gorgeous kids.
Goutlaw I had Taxotere. I am sorry you are having such a rough time. Pbrain had to change her regimin due to side effects. I had to have my dosage adjusted down by 25% due to my side effects. So there are different things they will try to make it possible for you to complete your plan. Hang in there hon, it sucks when you have to wait, I had to wait to start because of surgery. It sucks to be interrupted, I had to hold off on some tx because I was in the hospital due to side effects. LOL it is what it is, we are all different. Much love0 -
Special K, your son is so handsome! 6"3 tall....tall and handsome.
Goutlaw I have taxotere, but I don't kno what the diff between taxotere n taxol. I am sure our lovely ladies here will have answers for you.0 -
I had taxotere. They are both taxanes I think, but don't always have same side effects. Of course, SE vary from person to person anyway.
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Thanks everyone - I am a proud mama!
soriya - he is a foot taller than me! It is really hard to look him in the eye - I have to wait until he is sitting down!
camillegal - I am glad the moment passed and you like me again, I like you too much to have you not like me, lol!
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SpecialK , your kids are beautiful! You have every right to be proud of them.
goutlaw, I had toxotere too. Your MO should be able to adjust your chemo cocktail to something you can handle.
camille, I personally love reading your comments, pain meds or not. You always bring a smile to my face.
Pbrain, I hope your head feels better today.
ChickaD, I hope you are starting to feel better now that all you chemos are finished.
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I hope you feel better soon, sorry about the hair.
Vivian0 -
SpecialK,
Beautiful children! Bet they're great people too! They have a beautiful and very wonderful mom!0 -
Ashla,
I know what your talking about. In fact October is 'breast cancer awareness month' here too. No one has mentioned anything to me. I think being stage IV they're not sure what to say. I am going to a pub quiz tonight though, proceeds go to the cancer support France - a support group for English speakers. Haven't had much contact with them up until now, but it's a good excuse to go to an Irish pub!!
Nicky0 -
bren and ashla - thanks, you guys are so nice! I have stayed on these boards because I like to be helpful - I received so much info and support when I first came. Both of my children are helpful people too, so I guess it is in their genes! Every parent hopes their kids are good people, and so far they seem to be doing well. I think we all look back and see the mistakes we made along the way and hope our children turned out well in spite of them. So far, so good. I am glad they were in college when I was diagnosed and not little - I don't know how people have managed with young ones in this process.
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