TRIPLE POSITIVE GROUP
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SpecialK I think they both sound like leaders which is what we all want, but I lean tpward u'r DD to make this a family joke---which it will all be. LOL
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camillegal - Fortunately they both have a great sense of humor! We laugh about that day with the mouth stitches often - they were 7 and 8. DS was bleeding like a sieve - blood all over his face, arms, hands and he was screaming like a maniac. I had to get him into the bathroom without him seeing himself in the mirror because I knew he would lose it if he saw his face. DD was hiding in her closet. I called DH, he was at the Pentagon at the time. I said I'm loading the crazy bleeding kid, and the guilty scared kid in the car, swinging through the Pentagon parking lot, and we are going to the hospital RIGHT NOW! I called him as I was getting off the highway and told him to start running to the exit NOW! Off we went, and it all worked out - but we talk about that day all the time!
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See it's already fun, and believe me they will tell their kids and laugh the whole time. Cuz mine still talk about silly things and my grandson loves hearing these goofy stories and laughs.
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camillegal - it is amazing the things that become part of the family stories - my in-laws are still telling those kind of stories and their kids are all in their 50's now!
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SpecialK that's why I said this will go on and on and it's still funny. Bless all of u'r family.
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You all make me smile!!! It's just after 7am, and I've just logged on, to find the funniest conversation going on!! Thanks ladies - it got my day off to a good start 😃
Pbrain, LOL! And yes, the irony that this happened to you..... I'm going to have the image of you running around organizing the animals and getting dressed to go get your head sorted in my head for a long time. By the way - congratulations on your cancerversary
Nicky0 -
Seriously ladies you all make me smile daily!
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Keep those smiles coming ChickaD, Nicky , Camille and all..
Lots of really, really, really smart people(like Pbrain) working on finding treatments and hopefully one day some cures..
The cancer genome project....
http://cancergenome.nih.gov/0 -
Aw Pbrain...
Sorry about your injury.. As we discussed previously, I think I am one of those post treatment people who seem to have become more accident prone. Something is a little off.0 -
camillegal - and bless you and yours too!
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Pbrain, somehow you just keep going.... so sorry for your injury...
SpecialK, your family story is the tragicomedy that keeps me laughing, you know, the never-ending cliff-hanger episodes of parenthood and childhood... Right smack dab in the middle of my mental image of day-to-day Washington, DC....
And yes, trastuzumab was used for one arm without chemo by trial for metastatic cancer, but the problem there is that trastuzumab used alone could very well have poor results for those with a large tumor burden yet at the same time be quite effective for those with a low tumor burden like early stage bc.
I also want to mention that there IS one trial that has been offered for early stage bc using trastuzumab alone, and that is the trial for elderly patients. I don't know where that trial is at present in terms of results.
A.A.
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AA - tragicomedy describes it well! And, yes, it was ridiculous that my husband was running through the halls of the Pentagon so he could jump into the car with me to go get DS some stitches - not for a national emergency of any kind! The addendum to the story is that we went to Fort Myer - which is right above Arlington National Cemetery. They have a clinic, not a proper hospital, but it was the closest and there was no wait. My DH went in with him, I sat in the waiting room with DD. The doc came out later and told me he had never seen a kid that age who held still and just let him inject his face with numbing agent and stitch, that usually they have to be restrained or papoosed. This speaks to DS later becoming a fireman - he is pretty controlled emotionally (I actually worried about him with my BC diagnosis because it was hard to tell is he was scared or worried). He said as long as the doc was describing what he was doing and telling him what was next he was cool with it. He played Little League baseball at the time and his team pictures were a day or so later so we have a photo remembrance too! I posted that Herceptin timeline but I figured that you were aware of the early trial info, and I also remember reading about using Herceptin only for older patients for whom chemo would do more harm than good. It would be nice to have some info for early stage younger patients, but I guess at this point all the info is anecdotal. I know there is an active thread with a couple of people who are just having Herceptin, they refused chemo. Maybe down the line they will offer a trial for early stagers.
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SpecialK,
THAT boat has repeatedly left behind early stage HER2 positive ER positives. Thus far there have been at least 3 trials that they weren't allowed to participate in that would have provided that information (SOFT, TEXT, and TAILOR-X) if there had been an arm for them included in those trials.
I hope that explains why I am so unhappy with the NCCN's "guidelines" for those HER2 positive HR positives. I just would love to see them be given that fair opportunity. SHAME on the NCCN.
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Specualk, you talked about your DS getting hit by DD as payback. I meet that and raise you! My DS1 ,12 years old at the time, used to tease my Ds2 horribly when he was a toddler. I warned him that DS2 would someday get back at him . Well he didnt have to wait very long. DS2 was graduated to the upper bunk at about age 3. One night he hauled up his big Tonka truck (metal) to the top bunk. I didnt think all that much about it because he would dump out his older sisters dolls and use the stroller to push his truck around. I thought he just loved it that much. Um, DS2 waited until DS1 was fast asleep. Then he aimed the truck directly over his brother and pushed it over. We were awakened by thump and loud scream from DS1 who was crying and bruised. Little stinker looks at me when i ran in and says" it fell" hard not to laugh or say I told you so. LOL. Yes rules were changed to not take anything up top that wasnt soft. DS2 graduated with 4 degrees from UWM. He is definetly a thinker and planner.
AA, I understand where you are coming from. But it is s hard decision gor them to mot treat early extensively if not doing so might lead to more tx further down the road. Perhaps women be given the choice with all factors explained. But I tell you right with all I know and all my problems, because of my family history I would do it over again. And if that tX protocol would have been in effect I would have had to fight for the tx that actually found my IDC.
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moon - funny story! I don't think we often give our really small kids enough credit for "payback" thinking! I do think they tip their hand for who they will be as adults at a pretty early age - my DS always took apart his toys rather than played with them, he wanted to see how they worked. He is still like that and he can fix lots of things because he has that kind of mind. He also walked and talked early and was always determined - he was always very athletic. The only sport he does not excel at is bowling - not sure what happened there. DD sat on her blanket - not moving or saying a word - which was what I needed at the time because I was always chasing DS! At 13 months she got up and just walked around like she had been doing it all along, and then spoke in sentences. She is not comfortable doing anything unless she completely understands it and feels like she would be good at it. She has always related to animals and could get them to do anything - even things against their nature - she got the guinea pigs to lay on their backs and hold the pose! She taught her horse to bow and put his forehead on the ground, and taught the cat to freeze in his tracks. Crazy, right? You must be so proud of your son - multiple advanced degrees - awesome! DD just graduated from U of S. FL in May, but DS took time out to be a full-time firefighter so he is behind (a fact that delights DD!) and just changed his major to Sports Medicine - so even more behind. I told him he needs to finish college before his 10 year high school reunion!
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Thanks, Moonflwr. True, in all groups there are at least a couple who would recur.
But it is also true that among the early stage HER2 positive ER positives there are those like me who didn't even need trastuzumab (much less chemotherapy), as well as the group of patients for whom recurrence is due to having chemotherapy.
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I can so relate to all the head injury stories, our DS had stitches in his head 3 separate times between age 3 and age 17. All from a variety of crazy mishaps, none from DD though
and only one happened at home. SpecialK, you are right, they don't come with instruction manuals when they hand you that cute little bundle at the hospital. I guess that's what makes parenting so fun!0 -
The other thing they don't tell you when they give you that bundle of joy is that you never stop worrying! I sleep the best when mine are both under my roof!
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Hey guys. I love your stories. They really make me smile. My 28 year old son lives cross country in SF and is in Paris now working. He was so good coming home every 4 months, just to say hello. When I was first diagnosed my fear was not seeing him married and settled. I'm sure we all have similar fears. I can't believe in Dec it will be a year. How bc changes you. Sorry I'm rambling. Just smiling about your stories.
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I just got a brochure in the mail for the 21st annual Life after Breast Cancer Conference in Philadelphia, and I even though it is in Pinktober, it was nice to see that there is not a speck of pink in it and no pink ribbons either! Ok, there is a bit of mauve, but no pink! I am thinking of going since my BS is going to be speaking on "BC and the Immune System, New Treatment Approaches" as part of the "Latest Advances and What's on the Horizon" session.
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Evening everyone. So love reading all the fun stories...makes us all smile. Thanks for the fun SpecialK and all.
AA: You really make me think a lot about all of this...because I really was opposed to chemo but I did it anyhow. My husband wanted every weapon possible but seeing your mention that chemo could cause it to recur is frightening.
Did everyone see the new report about peanut butter for BC ... start eating it early in life to ward off bc.
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OK Bren as long as there are no pink things on that invite it's OK to go,,,if u see any pink balloons stick a pin in them, I would. I have to say I never went to anything for cancer, I used to donate a few times a year, now I cant afford to pay attention, that's why I don't sometimes about this horrendous disease, but I do admire the people involved in any way helping this cause, it's not an easy road to take but so many choose to help and that's wonderful. Bren just going is a good thing it does show support.
AA I always appreciate u'r posts altho I admit I don't understand all of them, my mind never wrapped around this, just my body and I figured tht was enough. But I give u so much credit for all u post and know. But that's why I really never post on what u've said, the others all understand what u'r talking about--I just look at it as it is what it is. and I never did research on anything. It's funny because I've done all the research on both of my DD's diseases, but not mine.
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Shasha10, FWIW, I was diagnosed in early December too, but long ago, and I'm still here!
ArleneA, I was very opposed to doing chemo and I did it too. That is not to say that once you have done it, it won't become part of the past that you can leave behind.
I think the more straightforward the care providers are with patients in the first place, the less traumatic it is. I know that my care providers were some of the best trained and with the best intentions -- and at the same time, I also know they failed bigtime to step up to the plate again and again to be truthful about it. It is hard to talk to patients when patients are so anxious or are in the middle of treatment and want so much to hear how well treatment works, but I was not one of those patients and my providers knew me quite well.
One thing that isn't obvious at time of diagnosis and choice of treatment, but that I realized afterward, is that the calculators don't provide any percentage for outcomes for recurrences that are due to chemotherapy. Yet in terms of pure scientific investigation, that question MUST be asked and accounted for. And not having it show anywhere as part of the calculators ends up with patients not realizing it even is possible, to be able to raise the question and get a straightforward answer when evaluating various treatment choices. I'm just not into being patted on the head when it comes to genuine questions. And I do want to hold caregivers accountable, because that is such a primary basic principle of what is called informed consent.
Camillegal, it is complicated stuff, but it is much harder to consider when you get derailed with recurrence. I've been thinking about it for over 10 years, and that has given me more time to ponder it.
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AA what I said I certainly didn't mean as any kind of insult--I admire u'r knowledge of every part of this. I just meant we are all different and none of us think the same way and if there weren't people ike u and others tht are on this thread that take such an interest in knowing as much as u all do--u are all such a big help to all who read and are anxious and scared, cuz most are especially at the beginning.
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Well, I intend to do my part for Pinktober by attending a BRA Crawl next Saturday afternoon. Comes with five bars, snacks and two free drinks. Big group of us going. You wear a bra (decorated) outside your shirt. Not sure I can get the guys in one, so thinking of doing a fun tshirt. I am digging out a totally rhinestoned black bra my daughter wore for one of her dance costumes, and if I can get it hooked, it is off to the party.
Twin....I am in a medical vacinne study (as is Special K). Everytime I go they take six vials of blood. They are testing all kinds of crazy stuff, none of which I know anything about. And don't feel bad about taking a break. For me, reading and researching round the clock was the only way I could cope, and I still sent myself in a panic disorder. Everyone is different, and you need to do what gives you some peace and perspective.
Pbrain-since July 12, I tripped up a step and body planted onto a landing, spraining my knee-had MRI on tuesday and it says I have a posterior and lateral miniscus sprain. From what I read, there is no such thing and it is a tear. I will be seeing an orthopedic guy shortly. Then, about a month ago, I wiped out on water ona smotth tile floor...went flying, hit hard. My big toe that already had hallux rigidus and was on a January surgery plan was crunched. Ortho foot doctor identified it as a front foot area sprain and said I stressed my joint, so I was in a boot for three weeks. It still hurts, but I am doing better. I am not going to be happy if I have to find time to repair my knee AND have toe surgery.
Maybe they need to do a study to see if klutziness is a long term effect from chemo. Then I will have a reason to use.
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Wait a minute Fluuf and everyone--think about it--there are more falls with hurt this or broken that after than we ever had before --well most of us. I never used to fall or trip--I have done it so much this las year it's a joke--to everybody else, but I'm tripping on a piece of dust now and sometimes my ankle just gives in. So Study time. on this We're a mess.
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camille - tripping on a piece of dust - been there, done that! So funny!
It is after midnight so technically it is the 28th, but I am still awake so it feels like the 27th - diagnosed three years ago today - still keeping on!
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SpecialK - Congrats on 3 years!
Camillegal - Oh no, not at all, I'm very honored to have anything to share that is meaningful.
And as for falling... A couple of years after tx, I had vertigo so steadily that I asked for a head scan and had it done. It turned out fine with one small white spot that they felt was "due to normal aging". (ME? AGING? HOW DARE THEY PUT THAT IN WRITING!) Anyway, I've never been too sure what good comes out of physical therapy, but amazingly the technique that one PT therapist gave me actually worked and got rid of the vertigo. But I still have poor balance. If I get up in the dark I have a hard time telling which way is really up.
Fluff - My big toe hurts just thinking about yours.... owie....
A.A.
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AA - thanks!
In 2005 I fell off my front porch, broke my talus bone in the ankle in two places, was in a non-weight bearing cast and on crutches for 12 weeks. My right ankle - so no driving - kids were 15 and 16 - military DH never home! Not convenient! All anyone in the ER asked me during the process of x-rays and casting was whether I had been drinking! It was Friday night, but hadn't been drinking at all - just put my flip flop too far forward on the edge of the step and ended up in the hedges! Fluff I feel your pain!
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Seriously, are we all klutzes. I'm starting to wonder. If I can get a 5 cm scalp lac just from getting out of bed wrong, do you think it has something to do with all of this dang treatment? And Cami, I almost wiped out on some dust in the spotless halls of my employer yesterday (no lie). It was about one or two specks.
I think we do need a clinical trial ;-)
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