TRIPLE POSITIVE GROUP
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Usually, I LOVE pink. At one point I had a husband, 3 sons, 2 male parrots, a male cat, and 3 male dogs. I had to add a little girlie to the household, so I wore pink a lot and decorated my half of the bath totally pink! Now the boys are grown and gone and I have added a female dog to the pack (see dog in my photo). (Garfield has gone to kitty heaven
). So redecorated the bath in brown and teal. Now, I have bc and everyone expects me to be in pink. My best friend, who wouldn't have worn pink under any circumstances, is now all about pink. We went to Sam Moon before I began tx and she bought pink hats and scarves and bags, and I got nothin'. I wear brightly colored t-shirts and matching bandanas.
Regarding donating: I don't have health insurance, so I am donating to my own cancer treatment. Into it about $50-60,000, and that's just the mammogram, biopsy, surgery, surgeon, anesthesia, pathology, CT scans, etc. Haven't even begun paying for treatment, although we did get some funding for herceptin, aloxi, and taxotere, and some discounted treatment. Without that funding and discount, treatment would be about $200,000-300,000. I think some of the effort needs to go to making cancer treatment costs somewhat more reasonable. Thankfully, at the treatment center I go to we have a financial advocate who works to find funding for people like me and people who need help with co-pays and deductables. (stepping down from soapbox)
I never heard of pinktober. We like to celebrate Oktoberfest in Texas: beer and bratwurst.
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NickyJ,
There is a decidedly different shift here as a result of many brave, smart BC survivors not so much against as away from awareness and onto....'let's get going onto real progress in prolonging lives and improving the quality of lives of survivors along the way.
Things are changing and in my opinion....for the better.0 -
Special K, I have 2 kids boy (11) girl (8). They are the love of my life. I wish cancer come to my life when my kids in college too. Sometime is hard to stay positive but I have too cuz of my kids. I'm sorry ladies If I made you feel uncomfortable telling you about my kids. I need to be strong.
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soriya - don't worry - don't think anyone would be uncomfortable - there are quite a few with kids the same age as yours - my hat is off to you - it has to be difficult because your kids need you so much at that age - they have homework and after-school activities, lots going on. You will get through this and be an example of strength for your children.
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karenrm's post as an uninsured patient is very, very meaningful. Her dx and mine are about the same, only her risk is likely lower than mine due to grade 2, as mine was grade 3.
Where it especially hit home for me is in knowing that there have been ten full years between my diagnosis and hers as stage 1 HER-2 patients, and the only "progress" that has been made (if any) is the greater use of taxanes and the addition of trastuzumab.
This is terribly sad to me because unlike most newly diagnosed patients, I understand fully that the majority of early stage hormone receptor positive patients who are also HER2 positive get little or no benefit from chemotherapy, and that they benefit most from hormone therapy. Yet the NCCN recommendation for so many still remains stuck on including the costly and miserable chemotherapy treatments (with all the support drugs and monitoring tests that go with chemotherapy).
Truly pathetic.
A.A.
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Because my tumor was stage 1a, E and P positive, had it not been HER2 positive as well, my treatment would have been lumpectomy, 5-day brachytherapy radiation, and AI. The HER2 ADDED 6 chemotherapy treatments, 30 doses of Herceptin, and therefore postponed radiation so that I have to have 5 weeks of whole breast external radiation plus 2 weeks of external radiation boost. I feel grumpy about all that, but I know many of you have had so much more difficult treatments to bear (ie, mastectomy, reconstruction, larger tumors, transfusions) that I have to consider myself blessed in a way. Please forgive the occasional rant. Plus, I started Anastrozole AND radiation last week, and I think it's making me a bit EMOTIONAL!
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I have twin boys, they are 3. I was going to start them in preschool this fall, but didn't because I didn't want them bringing home any yuckies for me, so they are home with me every day. It is hard. Not because of the treatment. or because it's hard to take care of them, but because when I look at them I am constantly overwhelmed with fear that I won't be here for them. I love them. So much. I don't want to miss anything. I even hate having to leave them when I go for my treatments.
That said, can we please be mindful that there are people in this group currently undergoing treatment and reading things like "the majority of early stage hormone positive patients who are also HER2+ get little or no benefit from chemotherapy" is very hard on the soul. Here I sit, my head floating and my body heavy from the stupid A/C, my sweet boys sleeping in the next room, already so scared about this whole situation and now it's in my head that what I am going through is for nothing, because it's of little or no benefit. Logically, I know this isn't true because I have actually SEEN and FELT my own progress in the correct direction, I have read numerous accounts of women on this board, women who are +++, with complete response after chemo, and I know my situation isn't EXACTLY like what was mentioned b/c I do have a known positive node - so really - chemo it is for me, but still.
Yes it sucks that the progress away from "poison, amputate, radiate" is slow going, but the reality is some of us are currently living this poop.Cami ~ Thanks for your sweet response earlier! Luckily the only real SE I am having {so far} is the out of body in my head/ yet heavy in my body feeling. It's weird and disconcerting, but I will deal.
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Twinmamaheather, I had chemotherapy too and I agree with you about how hard it is emotionally to hear that when you are in the midst of trying to deal with that treatment. I'm glad that sometimes it is possible to feel the chemotherapy working.
So I am among those who knows that chemotherapy is "doable", and that hair loss or nausea and vomiting (which nowadays is usually dealt with much better by varous drugs available) is still emotionally tough.
But to not say the actual information that for most ER positive HER2 positive patients, chemotherapy does very little would be to leave patients thinking that chemotherapy is always best, "just in case".
It was a complete surprise to me AFTER I completed chemotherapy to find out that for early stage bc patients, only 20% of them benefit from it. I'd rather have more patients aware of things like that if they are still considering what chocies they have, so that if they do choose chemotherapy they know what they have chosen. I went to a highly respected onc myself and yet repeatedly information like that was never shared with me. I didn't just "not hear it".
A.A.
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Pbrain sorry about your head injury , hope youre feeling better .
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SpecialK your children are beautiful ,god bless !
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Hi everyone
My heart EF was up. Not a lot but I'm resuming Herceptin on Monday. Thx for all your good wishes0 -
momx2 - thanks!
twinmama - hang in there!
shasha - glad to hear your EF is up and that you can resume H. Hope it stays up for the duration!
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sasha thats great news !
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Thank you;)
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Twinmama let me first say--u are amazing, I don't know how u take care of u'r kids feeling icky but I hope u have help, it's just tiring.And remember all info changes all the time, I think that's why I never took anything in and thought about it. Please just focus on what's going on with u and u'r kids and one day this will be a memory and u'r kids will be all grown up. I'm just hoping the SE's will be kind to you.
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Just a note to all on this thread. RANT AWAY! We are not in a contest to see who suffers more or who had the hardest treatment. I do feel empathy for those who have little ones while fighting this crap, and it doesnt make me feel uncomfortable, it makes me mad that you have to go through it AND take care of the sweeties. I remain in full admiration of those of you who have to crawl out of bed to take of the little ones. I just had to take of myself and some days it was almost too much. So please feel free to say what you want. We are here for ALL of you.
TwinmamaH, remember there statistics, more statistics and damn lies (to quote some famous somebody LOL). We sometimes dont know which is which. Also remember we are not a statistic! (to quote a cancer center comercial LOL) There is research that shows Herceptin actually works better in combination with chemo. I am hoping more studies prove this as I had to quit Herceptin before completing my year. I choose to believe I will be on the right side of that equation. Much love to all.0 -
Special, your kids, sigh...the beauty of them! And they also come across in that photo as very kind people. You done good Mama!
Shasha, that's all they want to see, that you can bounce back. They will likely not stop you again because they know now that you have a transient reaction.
And Twin and Alaska, I agree with you guys, but I don't think there is enough evidence to show that herceptin alone does that much. At this stage, it is believed that it works so much better in combination with chemo. However, the new drugs from Genentech are herceptin with a chemotherapuetic agent attached. They bind directly to the her 2 receptor, and are taken into the cell, so they are considered targeted chemo. I promise in the next few years that will be the treatment for early and later stages of her2+ tumors (which can occur in other cancers like prostate). So hang tough, but still do what is recommended today. I look at it as this is the "era" where we got breast cancer and I thank God I wasn't born earlier and had it in the 70's.
Oh and Twin, smart idea on the delayed pre-school. Kids with young immune systems are petri dishes filled with all sorts of nutritents!
So today, tah dah, is my one year anniversary since diagnosis. I have to tell you as I was driving all doggedly to the emergency department yesterday with my bloody head in Indianapolis rush hour traffic I was muttering to myself "I will not die of a traumatic brain injury one day before I reach my 1 year survirorship, oh no, it is not happening...I will live! I didn't go through all that crap for nothing!" I'm sure I looked like a nut to my fellow drivers, but I wanted to make it to today!! Yay me! I have a headache and the staples in my head are grossing me out, but heck, that's life :-)
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Oh and Gout--I'm not sure if it was taxotere or carboplatin that landed me in the hospital with my first chemo. All I can say is I was sick! I'd never been admitted to a hospital in my life, and all I wanted in the world was to be there and to get better. On taxol, eh, not so great, but no hospitalizations...just plugging along and feeling like death on a saltine.
Moon--I had 13 herceptins with 1 TCH and 12 taxols (weekly) then I had herceptin every 3 weeks (last chemo was 2/22) so wouldn't that have gotten me into the 20's? My arithmetic skills are gone since chemo. Poof...vanished...
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Pbrain when you were driving Im sure the other drivers were trying to stay away from the lady with the blood running down her face.... LOL
My son will always remember going to see the pastor with his fiance (they are now married 5 years) . He got up early in the morning to get a glass of water slipped on something knocked himself unconcious. His Fiance found him on the floor bleeding from his head. ( any of this sound familiar... LOL) ER visit. 5 stitches. Meeting with the pastor in 10 minutes so they went there straight from the ER. In Jammies.... full of blood....LOL.
and my arithmetic skill is nonexistant. And I guess it doesnt really matter as your MO is the one who really needs to know! LOL
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pbrain - sometimes I look at my kids and am amazed that my DH and I created them, parenting comes without an instruction book - they are good, and kind, but not perfect - I am a realist. I think about the fact that DS, while still in high school, was, and still is, a fireman/EMT - willing to lay down his life to save someone else. DD is an animal lover - her current internship is at Clearwater Marine Aquarium (home of Winter from Dolphin Tale), and they lost their oldest dolphin yesterday, she is heartbroken. She has fostered birds and kittens and even an iguana - needless to say she has had every kind of pet. Interestingly, right now both are single, just exited long-term relationships.
moon - did the pastor have any pressing questions regarding the PJs and stitches?
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The numbers are a a really difficult thing to get your head around. They can sound negative or positive, depending upon how one thinks about them. Remember that most early stage bc patients don't need anything but surgery, so when you realize 20% benefit, a good part of that is those in the 80% left who didn't need it in the first place, and not just those who had it and recurred anyway.
I do want to clarify something, since I have seen a comparatively longer period of information about breast cancer at the time that treatment changed for HER2 patients to start including trastuzumab. Due to the way in which the trials were conducted, we do not have adequate evidence to know yet whether chemotherapy in addition to trastuzumab works better. I know, I know, it is often said. But because the trials for trastuzumab for general adjuvant use have never been done on trastuzumab used alone, it is more accurate to say that adding trastuzumab to chemotherapy "works better". We still don't know how necessary or useful the chemotherapy actually is when combined with trastuzumab.
What also is not accurate is to use the terminology "using trastuzumab alone" when comparing it to using trastuzumab with chemotherapy. That is because there is such a large group that potentially could not only benefit from trastuzumab without chemo but with either tamoxifen or an AI or ovarian ablation by other means than chemotherapy.
What is possibly likely is that since hormone receptor negative HER2 positive patients don't generally benefit from tamoxifen or the AI's, they can't take those in addition to trastuzmab as an alternative to trastuzumab alone. Those patients still probably benefit from having whatever amount of ovarian ablation they get from doing chemotherapy in addition to trastuzumab.
It isn't obvious information, and the distinctions get lost in the the panic and rush to move forward with some kind of treatment, so the confusion is understandable. Nevertheless, I do think it is important to try to explain it.
AlaskaAngel
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SpecialK u and u'r DH should be smiling from ear to ear.
And Moon if I was the Pastor all I would say is u are a perfect couple--exit room
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LOL They did explain to the pastor they did not want to miss the appt and didnt leave enough time to cancel. He did mention at the wedding that they were committed to each other in sickness and health.... LOL(other than during the actual vows) LOL.
Aa, thanks for clarifying.
SpecialK your kids sounds like the kind of kids we all try for. Cami I think the kids are perfect for each other too LOL Much love to all0 -
Yay, Pbrain! (Does anyone else get the irony of Pbrain nearly knocking her brains out?)
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moon - that is a crazy/cute story!
karen - Lol!
moon/cami - I count my blessings every day! That being said - they still do have their moments, as all kids do!
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SK, of course they do. But that doesnt mean we cant brag once in a while.... LOL
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Moon, your story cracks me up! Especially now that I've been through it. Head wounds bleed like a fountain and they are only superficial, but scare the crap out of you. You should have seen me getting ready for the trip to the ED. I swear I walked my poor doggie in about 4 minutes, made sure the cat ate while we were gone, brushed my teeth, pulled off my bloody PJs, put water in the pet dishes and FLED! I know enough to know the vascuralized scalp doesn't equate to a brain injury, but I was pumped to make sure I didn't die before today!
AA, you are so wise, and so right about the over treatment of breast cancer. I know from my experience in handling phase IV trials at Roche (in the diagnostics division, so blood tests, not drugs) that so much of the research that needs to be done can't be condoned by an internal review board. To say "hey, let's do a clinical trial where randomized people get herceptin with chemo and the other arm gets herceptin alone" would just never get by an IRB. Hence the over treatment...
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AA - I assume you are speaking of early stage BC patients, but the some of the initial Herceptin trials did test it without chemo, but I would assume the patients were advanced. Here is the link, but I assume you have probably seen it already. Read the history from 1992 onward.
http://www.gene.com/media/product-information/herceptin-development-timeline
pbrain - when my kids were in high school (they are a year apart) they were carousing in the basement with their friends and DS threw a pillow at DD so she threw a baseball hat at DS. She must have thrown that thing like Oddjob in the James Bond movies because the brim of the cap hit him in the eyebrow and laid it open. I had to take him to get stiches because I could get the wound to stay closed, and he was very worried that they were going to shave his eyebrow off. If they did he vowed to come home after and shave hers off in retaliation. Fortunately for all involved, there was no eyebrow shaving - but he had the drape that just isolated his eye, which looked comical, then he filmed himself getting the stitches with his phone. 100% of his stitches have come from his sister - there was a laser tag incident ten years before the eyebrow. Stitches on the inside and outside of the corner of his mouth - fun times!
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SpecialK I love it--wait not that u'r DS got hurt no no, but that u'r DD will always be able to remind him when they get older who got the worst of it. It's so cute, it will be so appreciated in later years more than ever. LOL
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camillegal - because they are so close in age DS always resented baby sister's arrival and wasn't very nice to her when she was little. I always warned him that she would eventually exact her revenge - and she did! She is pretty tough - and a tomboy! I joke that they fight because we raised them both to be leaders so they are constantly trying to lead each other, and neither wants to be the follower! They will figure it out eventually!
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