TRIPLE POSITIVE GROUP
Comments
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Jen....It is so hard. A friend of my daughter's dad was diagnosed with duodenal cancer recently and is not doing well on agressive treatment. Her mom was the surgical nurse who got herself assigned to my first two surgeries so that she would be the last face I saw before going under anesthesia. Now, she was just diagnosed with uterine cancer, which fortunately turned out to be contained so she only needed the hysterectomy, but gosh, enough is enough.
Both my kids have a hard time with this. One is trying to build a career in LA, after just graduating. My son is here in town. I have told them what others have said. I intend to do everything I can. I just emailed them info on the new drug for her2 that the FDA has fast forwarded into action, telling them that there will be a new thing to use if it does come back.
I have a couple questions on the three year thing.
1. Do you start the three years after finishing herceptin, assuming that while you are receiving it, cancer is unlikely to show up?
2. As a triple positive, doesn't the er component continue to cause a risk for a long period?
I thought it was triple negatives that were considered pretty much out of the woods after three years, but I have not really researched it.
For now, I think I am just going to behave myself and try to move past this. I have set May 1st as my official "move on" date. That will be one month after my fat grafting/lipo surgery, and my last herceptin on March 20.0 -
Fluff I do believe the 3 years starts from the beginning of treatment. Year one being in treatment and the risk of course is lower then goes up year 2 & 3. I too heard/read on this site that the risk for us triple positives is similar to those who are just hormone positive but that didn't come from my onc or any study I read. I did read a study that showed long term hormone treatment past the 5 years was beneficial to luminal A but not beneficial to luminal B. I wonder if thats because us luminal B weren't likely to recur anyway.
I too am going to ask my onc if our risk goes way down to nothing almost like triple negative or hormone negative/HER2+. I think you too should ask your onc because you are not as typical as most HER2+ being grade 2 and if I remember correctly highly hormone positive. You might even benefit from additional years of hormone treatment.
I also think that in your case you might fare better than most stage 1 because you have been treated so aggressively… but I'm no onc.
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Fluff, what is the drug you said the FDA is fast forwarding into action?
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I haven't been here in awhile but hope I can reach out to get some support. I am waiting for surgery...Wednesday to remove a chest wall mass. I had chemo that ended in sept, mx in oct rads over in dec. a month after rads ended I noticed some tightening that I wondered if it was scar tissue. Had a very little blood aspirated from it then. Now three weeks later it is larger, about the size of a large egg, bulging over my chest. There has been no trauma so I am freaking out! Doc originally thought hematoma at first visit. Anyone have advice or sites to look at to calm my anxiety? Thanks for being here to support- so many wonderful people!
Dawn0 -
Ah2b....i have no advice but I send all the positive vibes I can.
Lago...I am barely grade 2, lol. One more number and I would have rolled into 3. on the er component, I had a multifocal tumor, but it was 40% er, 14% pr at the identifying biopsy. On my first biopsy however, when only lcis tissue was identified, that was listed at 80% er. I dont think it noted the pr status, but I will look again later. I will ask my onc at yoga tomorrow night.
Jen...here is a link to the drug that is close. Also, there are lots of preventative vaccine studies out there. I am going to try to get into one, although it will mean a lot of driving for 6 months. http://www.drugs.com/nda/pertuzumab_120207.html0 -
fluff - How did the lithotripsy go?0
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Just chiming in, Fluff, with some late congrats! Yay!
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ah2bthin: it is probably a hematoma or a seroma. You had surgery, chemo and rads recently, so it is probably no big deal. After MX it makes sense there would also be some scar tissue, right? After my lumpectomy I developed a puffy seroma which wouldn't have had a lot of blood, more like lymph. It went down on its own or I would have had to have it treated. Don't freak or put the cart before the horse. Good luck Wednesday! I don't have any sites for you to look at, but take your Ativan!0
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I could use some advice with what I think is an unusual problem. Im having a lot of anxiety about getting back to doing my "normal" stuff. I rarely went out during treatment, skipped my kids games, didn't work, and was pretty solitary by choice. At the time, this was what worked for me. But now, i think by handling it this way, I've made it harder on myself. Im actually nervous about going to school events for my kids, restaurants, etc. because I feel like everyone in my small town knows my business and is feeling sorry for me. I cringe when people ask how im doing. I feel so dumb for admitting this, and I know getting bc was not my fault, but im having a really hard time getting past this part. This sounds so shallow, but not looking like myself makes me feel even more nervous. Im going to have to pop ativan just to go to a little league game next month. I sound like a crazy person to myself as im reading my own post, but know if anyone can understand what/why im struggling with this it would be some of you here. Thanks so much for any replies. Btw, by saying I think its an unusual problem, I just mean that so many women seem to have handled this and all aspects of bc so much better than me. >
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FLUFF -
I am also a Grade 2.5.
My official pathology says Elston/Ellison grade II/III. It's like they couldn't decide.
I had a friend diagnosed last week...her ER/PR were both negative. Still waiting on HER2 path. It was the first time I was really thankful for my ER/PR+...and I'm hoping that her HER2+ comes back positive. That would be better than Triple Negative, right? She's grade 3, multifocal, 64 years old.0 -
Ah2, hang in there, deep breath, and you will make it. Shore1, your problem may be a bit unusual, but (don't we all love this word!?!) Doable. None of us handle it better than others at all timed, and if you read any thread for any length of time, you would see us ALL hit our limit at some point. You are right about small town knowing all about you, but that is also their strength. They already know about it, so you don't have to tell them. Just answer you are doin better every day. Easy and true. If they are obnoxious about it, go onto great detail , especially about your toilet troubles. LOL. Take small steps out into the world and knowvthatbyou are strong enough to do that because you are strong enougjto question yourself, THAT takes some strength! Much love
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Shore1-I also live in a small town, work in my community am pretty private and originally wanted no one to know that I had bc. I work for the health system that I have used for all my care. Everyone has been so supportive and caring. There are people who have reached out to me to offer support that I never would have guessed. I have been truly amazed and blessed. I would not have felt this way if people didn't know. Yes, they may give you "the look" that none of us want to see but they do care, they are compassionate and they truly do mean well! I know about not looking like yourself, I had long blonde hair and now have short brown hair....I haven't lost the wig for work yet but so many people have seen me without its almost comical. You have to do what makes you feel good. You will be amazed at the people who love and care about you....no matter what you look like. I hope this helps and you don't sound like a crazy person, we all have our things that we can't deal with! Hugs to you. Once you get out there a little it will get much easier!
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Shoe1
I did the same thing during my chemo. I avoided public places and socializing as much as possible because I wanted to stay healthy and get through my treatments on schedule. I'm going to be a grandma for the first time in early June and want to be able to hold my first grandchild.
We probably did ourselves a disservice but it's done. As far as the anxiety..it seems to me from reading through this forum...the vast majority of us have developed anxiety issues of one kind or another ion this miserable ride. Medications hormones, chemo and trauma all contribute.
My advice is to put on your makeup, get someone accompany you and start on small trips to your most comfortable places. Pop your ativan if you must at first and don't t feel guilty about it. Having a few hours out not thinking about your illness can be a great diversion.
Work yourself up to bigger, longer trips.
Good luck..0 -
Shore1
I just noticed Nancy Jill just might be the perfect person to help you!0 -
Ashla, ah2bthin & moonflwer, thank you for the supportive words. I wish I didn't feel so uncomfortable, but I hope with some time I can move past it. I also hope that with time people stop giving me the "look." This has been the hardest part for me to cope with.
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Shore 1
once you start talking to these people you will be amazed at how many of them have gone through this type of situation either personally or with family.
I believe you'll be pleasantly surprised. Step out slowly....the first step...and good luck.0 -
Shore1, I understand "the look". I felt like I had cancer written on my forehead when I returned a few times to hang out with one particular social group I am involved in. I, too, have pulled back from this group in particular. I feel like when I walk in they all see me as is "the girl who got cancer"...aka "the girl we don't want to become" (it's a women's social group). Most of this, I realize, is in my head, as the majority of these people are way too nice and sincere to be thinking bad thoughts about me.
Still, I got tired of telling my story over and over again about where I was in treatment, and even more tired pretending that I was perfectly fine, when things were still up in the air. Sometimes I did get the impression that a few girls were like "is this ever going to be over?". I felt like they would much rather just continue on with their happy lives and not be bothered by "Debbie Downer" who reminded them of what could happen to them. I don't plan to return until I'm done with treatment. It's just easier! 0 -
I dont know if this will help but I created an image in my head. Since most of the thoughts I think people are thinking about me.. are probably in my head I decided I would give them another thought too. I go out strong. proud. So now people are saying. Wow she is so strong, she is a fighter, a warrior. So now in my head I am strong symbol of the ulitmate woman! I am a wife, a mother,a friend, a sister, and a fighter. I am woman hear me roar! lol granted, I am still going through treatment so maybe this is just how I can cope now.
Good luck you can do this!
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Fluff, nancyjill, moonFlwr-thank you for your replies....found Ativan....hope it helps! I appreciate the support here!
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Can anyone help me with a math problem? I start DD Taxol Tuesday (4 treatments every 2 weeks) to which they plan to go ahead and add herceptin. So I will have 4 herceptin treatments in a 2 month time period. The plan is to then switch herceptin to every three weeks. It's my understanding I will be on herceptin for a year. Does that mean 12 total treatments or march 2012-March 2013? I'm confused about the timelines here.
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My new onc did reference a study about the 3 year dropoff. I think it was a herceptin study. I see him again in 2 weeks for BRAC testing, since my old onc never did it and hormonals to see if I should switch off tamoxifen to an AI. I will try to get a study to cite...studies like that are nice to hold onto!!
I asked 2 oncs this week about metformin. The new guy said "In this country", metformin is not yet stqndard of care. He then explained that other countries have been on the bandwagon with similar drugs for awhile. Grrr. I am still getting Metformin from a GP, but both oncs were not interested in prescribing it for me. The GP happily did. Go figure.0 -
NCbeachgal It's a year in time. I had all my hereceptins every three weeks starting Oct. 5, 2010 and finishing Sept 6th 2011 (total of 17 treatments).
Shore1 you will find those people are more nervous about what to say then you are. They really do care. They will be amazed to see how well you look. Most people don't understand cancer. The all think you look like those cancer actors on TV. I remember going ot a professional event about 3+ months after chemo (almost a year ago). I wasn't wearing a wig just had a short pixie cut. On man, who also lives in my building hadn't seen me in a while. OMG his jaw dropped and said "you look fabulous". Ironically I saw him last week and he said "still looking great."
When I'm asked "how are you doing" I tell them great. Only one person questioned it, my BIL. He said something like "well I guess that is a pretty generic answer to my generic question." I replied, "What, you want details?"
He laughed. (My BIL is a physician so I know he really doesn't want details. He deals with it all day).There will be a few that ask stupid questions like "did the get it all". OMG I really wanted to say "how the f@*k should I know" but I just said "of course, I have a great surgeon." Just be positive. That way you don't have to get into detail with these people… unless you really want to. linky
Fluff your ER/PR isn't much differnent than mine. (ER 30% PR 3%). Guess you're really a 3 like the rest of us.
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Thanks everyone, all good points & good ideas. I will suck it up &d figure it out. I have no choice - can't be a hermit forever! Lago, thank u for the link - it was hilarious. My favorite was "you got free implants, lucky." I needed a good laugh tonite
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Thanks lago. I was afraid of that. Right now I'm more afraid of taxol though.
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NCbeachgal I found the herceptin alone no big deal. As far as Taxol… well we all fear the unknow. I did 6 tx of taxotere every 3 weeks. I wish I could have stopped at 4 but I still got through it. I think flu symptoms are worse. I am useless/bedridden with the flu. Not so when I was on chemo.0
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My response to folks asking how I'm doing is to say "good, how are you"? Standard reply to a standard question. I don't notice if anyone is giving me the look, but I do have a big smile ready for everyone - greet everyone with kindness and assume that they welcome and care for me as I do them.
Lago, I like your response to your BIL about details!
Sometimes when a close friend asks how I am doing and I give them my pat answers ("pretty good for a lady on chemo!" or "hanging in there!") and they appear to want more, I ask them if they want details. I don't launch into anything with folks until I know they want to hear it. It may be my day to day life, but for them it isn't and every conversation does not have to be about me.
People are often nervous about how to talk to us because they do not want to say the wrong thing and we may take this the wrong way and think they just don't want to talk to us. This is not the case. Remember, we teach people how to treat us (in everything).
NCbeachgal, the Taxol will be rough, I'm not going to lie, but you can handle it!! Be sure to get a little exercise in every day, even if it's only a slow, short walk around the block. If you want more info, feel free to send me a private message.
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Lago-i was 6/9 for my grade. Mitotic-1, nuclear-2,architectural-3. Somewhere around 25% of my tumor was lobular carcinoma in situ, whichwas the multifocal component. For stage, is also says pT1bNX. And my ki-67 was 15%, or in the borderline range. High ks over 20%, and low is under 10%.
Shore....I pulled away some also, but in the end, our friends drove me crazy. They were like pit bulls who wouldnt let me pull away, so I gave up. I did stay away from crowds to the best of my ability during chemo. We would do things at their house, or if I went to a movie, we sat away from people. I still wear my wig as Ifeel more like me. I need longer bangs. And I hate how I look in short hair. Although like you, almost everyone has seen me in at least the baseball cap when I work out.
Ncbeachgal-let me speak from the other side for Taxol. I had 12 weekly infusions with herceptin. Decadron first, then the stuff. I had very few side effects at all. Start taking acetyl l-carnitine in large doses. It may help with neuropathy and joint pain. I had very little....mostly my hands and feet were always freezing. I was up all night from the decadron on infusion day and had lots of energy that day, so after chemo, I would immediately go work out and then run errands. I was wiped out on day 3. Also had some intestinal issues, either one way or the other, never just normal. I did not lose all my hair. Did a lot of shedding but made it without a wig for 8 weeks, then wore a wig, or baseball cap when I worked out. Three weeks after I finished chemo however, most of the remaining hair, all eyelashes and brows fell out. New ones were coming in so they were not gone long. And my wig had long bangs. Feel free to PM me with any questions.0 -
Ncbeachgal-you might ask them about getting it weekly if it isnt too far for you to drive. I beleive it is thought to be a lot easier to tolerate. For me, the dose dense Herceptin had more side effects when I went to every three weeks and a 30 minute infusion. They had to slow it down to 90 minutes.
Omaz...lithotripsy was a piece of cake. So much so, that I am worried that I still have the kidney stone, I go back on the 12th for followup xray, but I have not really passed much of anything and I still have a minor dull ache on that side. If it is still there, it is going to stay there for a while unless they can make an awfully compelling argument otherwise.0 -
Sorry, just FYI, I am in the ER with a fever
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Oh no Moonflwr! Glad you are being taken care of though...
Jenn0
