TRIPLE POSITIVE GROUP
Comments
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fluffqueen I had a rash this summer that lasted at least a month just before my 16th Herceptin. My onc wanted me to see a special dermatologist. By the time they could fit me in for an appointment it went away. Sometimes a rash is just a rash.
As far as mets. I know a woman (initally met here on bc.org) who is a 21 year survivor. 6 years NED then 15 years mets… and still going. She's still working and going places too… Yes she is still living her life.
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Lago: When you mention rash....while I know what a rash is (:) what exactly do you mean by rash. Should we be looking for rashs in general or in some specific area.
Cancer thoughts? I think about it daily...more than not, I guess but I'm still only 5 months since I completed radiation and with the hold up in Herceptin, tough to not think about it more than not. Hoping this passes and the thoughts become less and less! I talked to someone the other day about breast cancer and they said, it is like the flu as it seems like everyone is coming down with it. That is sad! I hope that vacine that is being talked about the the HER-2++ girls does the trick.
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Ok, you all sound like my oncologist, who says in his very proper Indian accent "you must think positive thoughts. Why would it come back? You have done everything you should. It is not coming back."
The second he says that, I start to panic that he has just cursed and jinxed me into a recurrence for sure. I look for wood to knock on, or salt or something. Lol. I told him tonight at his yoga classthat he is forbidden to say that anymore, or I am going to start reading him the postings from stage ones on thos board who went to stage four. Ton-i'll start with the bottom part of your post. Hey! Maybe if I start reading them to him, it will make him crazy and he will give in and give me the pet scan.
Seriously, he is agreat, and I do understand his thinking. I just dont agree with it.
Lago, thanks for the rash update. I am just so over them. This one looks pretty minor compared to the one I got when the expanders were reinserted. If it doesn't get worse, I'll be fine.
Tonlee-I have one foot on the vigilance side and one foot on the obsession side. Firmly planted! Bahahaha! I hope to move to the good side, but it is slow going.
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I also haven't had any scans. All these posts have me thinking now, and a little anxious. I'll ask my onc about it this Wed at my prechemo appt.
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Hello,
I started on AC 6 days ago. Will get 4 teatments over 8 weeks. Then TX +Herc. once a week for 12 weeks and then Hercp for a year with radiation at the end. Pretty standard dose dense thereapy for my type of cancer as I understand it. So far I'm tolerating things pretty well but I'm expecting things to get worse with each treatment.
My question is for those who have been on a similar track is the TX+Herc. worse to tolerate than the HC? My big worry is fatigue.
Thanks for any help,
Peggy
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Arlene I am no rash expert but if you have any kind of rash for more than 2 weeks you need to be seen by a doctor. My GP wasn't worried about my rash. We didn't know what it was because it wasn't itchy just a blotchy rash. My my chemo nurse saw it (was still doing Herceptin) that's when she alarmed my onc/NP.
Leukemia can present itself with a rash. While rare, chemo can give you a secondary cancer, Leukemia. I think that's why they go nuts if you have a rash. I would double check with your onc about t his.
Bottom line is we will all get rashes time to time and t hey have nothing to do with cancer or cancer treatment. Don't assume every time you get something it's mets. A headache is usually just a headache.
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Kitchenella, most people find taxol plus herceptin much easier to get through than AC. From what I've been told AC is the toughest regimen you can be on. They don't call it the red devil for nothing. That being said, taxol is not a walk in the park, but I think you will find people who did AC first complain about it much less. You only have three more to go, you'll get through it soon. Is that something new, not to do rads until you're finished herceptin? I think most of us here did rads while doing herceptin. I did herceptin tx two days before mx.
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kitchenella, I definitely found TH much more tolerable than AC. I had a weekly dose of Taxol, and I think b/c it's a lower dose over 12 doses, it has fewer side effects. But I think even the larger dose of Taxol is typically easier than AC. I definitely wasn't my old self on TH, and realized that after I was done, but I had NO nausea, and just a little fatigue compared to AC. And then when it's just Herceptin, walk in the park!
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Kitchenella, I finished 4 AC in early november & will get 9 of 12 taxol /herceptin tomorrow. I have found TH very easy compared to AC. I am extremely tired & the aches are a little scary because I constantly worry about what is a chemo SE and what could be something else, but there is none of the nausea and overall sick feeling that came with AC. Even AC didn't get really bad for me til the 3rd treatment. There is a taxol thread on here that has lots of good info. Good luck.
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Thanks for the informantion Saralmom and shore1. I'm just finishing up day 6 of my firt AC. Kind friends keep bringing in food and I"m freezing it, anticipating that I will feel worse with subsequent AC treatments.
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thank you ladies for your info on scans, on both sides, i am like a lot of people caught in the middle after having a year of scan craze, your information and experiences truly help!
have a great week, this chemo tongue is not stopping me today
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Talking about the rash, I have "rashes" over both arms and back, a needle tip size red spot, very itchy, iI had that for a about two weeks then got better but still saw some tiny red spot on my arms. I went to see a specialist when I developed some tiny red spot near my scars and she said those were broken veins. I am not sure if chemo or herception cause those tiny tiny red spot on my body. Forgot to mention to my family doctor when I saw her but will remember to mention to her next time when I go for my ultrasound results.
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Speaking of scans, I do have to repeat the abdomen (for liver) scan next month. I know I'm OK but they still want this repeated. Funny how I'm fine with no scans yet I still have to get one.
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Lago, iam like you too. I am fine with no scans, but keep getting pushed into them. I am happy when I hear all clear from them though. And I do agree that everyone should be offered a complete set either right before or after treatment too. It's almost crime to deny someone th peace of mind.
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I am unbelievably tired of reading comments on support threads about how us bigger women need to lose weight. I thought this was a support group -- not a "nag on the fat chicks with cancer about their need to drop weight" or "if so-and-so was obese I bet that contributed to her reoccurance/death/complications, etc. etc." group. Believe me, as a fat chick -- I know I am fat. I refuse to use the word "obese" because I find it offensive. As a fat chick, every doctor I have had prior to my current doctor blamed every medical issue I had on my weight -- from shortness of breath to the chronic joint and muscle pain I had been having since I was a teen and started gaining weight. I was finally diagnosed with asthma in my late teens by a new doctor and after two decades of hearing how my chronic pain was "because you're fat" -- I was FINALLy diagnosed with fibromyalgia just this last year. My blood pressure is 126/78 nearly every time I go in to the doctor (unless of course I am going in for Herceptin which I always get anxiety about the needle-in-the-chest-port thing and my blood pressure shoots up). I know I have metabolism issues but every time I get tested I am still in the "normal" (but borderline) range with regards to my thyroid. It's been a struggle to lose *any* weight and I have dropped 25 lbs since starting cancer treatment. I can assure you that the last thing on an overweight or fat chick's mind when battling cancer is trying to also fight with trying to lose weight. Every woman on my mom's side has had breast cancer so fat or not, it was pretty much a given that I would be diagnosed as well. Do all of us fat survivors a favor and can it with the commentary on how we should all lose weight. Believe me, we hear it from our doctors quite enough, TYVM. I sure as heck don't need it on a support blog.
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(((((hugs))))) let em swing. You are pretty new here, hopefully you will feel more support on the right threads. I can feel your anger and understand how you feel. I hope you'll feel supported in this one. That's what I am here for to get and give support and info.
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Let_Em_Swing I think the issue is it's one of the factors that may contribute to breast cancer risk. There are plenty of overweight women that never get breast cancer. There are several factors that need to be in place to "turn on the switch" from what I understand. The more factors that are removed the lower your risk but still no guarantee.
Even now they say smoking but if you look the risk increase for smoking is very low. (I quit 6 years ago). Extra weight can contribute to a host of health issues but it's not a guarantee. It's worse if you yo yo your weight.
But you have to understand they are saying this because they care. I remember telling my last gyno I was concerned because I was gaining weight and couldn't lose it. Her reply "Yes honey I know it's hard." This is the same gyno that missed my 6.5cm tumor in my A/B cup breast 5 weeks before my mammo… at my mammo the US tech kept saying "why is this area so hard? Is it always so hard?" (yes I fired that gyno after my biopsy when I found out I had breast cancer. She didn't even know I had a biopsy but that's another story.)You don't want a doctor like this that doesn't care… trust me you really don't.
Congratulations on losing 25lbs. That's something you should be proud of. You are trying but I understand where you are coming from. I have friend who struggle too but because of other issues (bad knees, arthritis, et) exercise can be a challenge.
My big question is has any doctor sent you to a nutritionist? It's one thing to tell someone to lose weight but if your doctors really want you to do something they should be giving you all the tools you need to try. Losing weight is hard but it looks like you are trying and making headway.
My husband worked hard at it but did it. Went from a 40 waste to a 34! He does work out everyday before work for 1.5 hours and is careful about what he eats. Cheats a couple of meals on the weekend and never drinks. But of course we know it's easier for guys. Next time your doctor(s) say something tell them you need some guidance!
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Lago, I agree some are saying it because they care like you, but I've seen posts saying something like I got BC even though I exercise, am thin, don't smoke and do everything right and it makes me mad when I see someone driving a truck, obese, smoking and eating a big Mac and they didn't get breast cancer and it makes me mad. I know we're all emotional and upset especially right after dx, but really? There are some pretty insensitive comments on the boards. Sometimes it seems like middle school. And once one thing is said, it can get picked up on and repeated. I try to stick to threads without those kinds of comments. But they are out there.
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Yes Kay I agree. Believe me I've has some mean nasty things said to me while I was going through treament. I was referring to her doctors not the few insensitive folks on this forum.
BTW I too did all the right things (quit smoking about 1 year before my BS said my cancer started but I'm still not convinced that if I didn't smoke I wouldn't be in the same situation since the risk is very low). Luminal B breast cancers (that's us):
"... were likely to be younger at diagnosis than those with luminal A (OR before age 50 of 1.83, 95% CI 1.32 to 2.55, P=0.0001)... Luminal B patients also were less likely to use hormone replacement therapy (OR 0.66, 95% CI 0.46 to 0.94) and oral contraceptives (OR 0.73, 95% CI 0.55 to 0.96), or to consume alcohol (OR 0.74, 95% CI 0.56 to 0.98), the investigators found." source
So it seems we luminal B folks tended to have healthy habits or not involved in activities that increase our risk but still get it. Like I said there's some switch that is a big one. I still believe stress is one of those major switches.
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I believe there really is no rhyme or reason. I've never been overweight, have always eaten healthy, always exercised a lot. Never took birth control pills, no hormone replacement medications. Had a child before 30, nursed her for 2 years. No family history and ping, I have it and I'm also one of the older ones too!
One day, they will figure it all out, maybe!
Welcome "Swing"
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i think stress is a big factor. that's what I blame mine on.
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I understand what SWING is saying and I remember reading the post that KAY is referring to with disgust. It almost felt like that thread was saying that if one is overweight, they somehow "deserve" BC more than their thinner counterpart.
I'm overweight. I have been my entire life. I work out 1.5 hours/5 days a week. But the scale hasn't budged since June. Doctors do dismiss weight issues in my experience. They all say to lose weight but no one says how to accomplish that. And to a person that never learned healthy exercise/eating habits - we need an explanation!
I've lost 60lbs since my diagnosis almost a year ago. But not one doctor has said a word about it. Had I *gained* 60lbs, well... And that is wrong.
I know my weight is a risk factor. But a risk factor is not a CAUSE. I'm working on it. I figure that if I keep at it in the gym, something will eventually give. And if it never does, I will at least be healthier and stronger. I participated in the Livestrong program and in 3 months I increased my max leg press by 100lbs and my bench press by 15lbs. I was so proud of myself.
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pejkug that's exactly the point I'm making. Chances are if you are weight challenged most of your life then you need some guidance with methods that you haven't tried yet. The "eat healthy, eat less" is not going to help most people because they don't really know what that means. You can eat less but not eat enough and actually gain weight because you're too damn tired to do anything.
My recommendation is if the doctor says it to then ask for help, no demand help!
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Congrats pejkug3! That is quite an accomplishment and you should feel proud!
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Yep, Lago...you are 100% correct. Eat less and eat healthy is just not enough information. I need a map from here to there. lol I'm learning, slow but sure, I am learning. DInner when I was growing up was a can of soup dumped over pasta. And my mom thinks that she's a good cook! Oh, my...
The best thing is that I *feel* good. I feel strong and I'm not giving up. I cut it short at the gym this morning (only 1 hour) and vowed to start keeping a food journal again. I want the scale to budge!!
I can truthfully say that I've learned more on BCO about healthy eating than I have anywhere else. I got a second chance at my life here - and I'm not wasting it. 0 -
I have to throw my cents in. Im very happy for the women who have negative nodes. But to repeatedly hear, "thank god, my nodes are clear" from numerous women is very hurtful to those us who have positive nodes. We wish we had negative nodes as well!
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I've had that feeling when I've read that comment about nodes too. (I am a fellow nodal involvement lady.) I know women are just happy about the news and expressing their relief, but something about that thank God comment with it gets to me. And I have seen it several times. I don't want people to walk around on egg shells, afraid to post and upset someone else, but just a little thought about how might this feel to someone in other circumstances reading it before you post is probably warranted. That said, I'm sure I've said things that could have been said better more than once. I mostly just love the support and help on this website.
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Swing,
Did that happen on this thread? Did I miss it? More pointedly was I a part of it?? lol I don't think I was involved in that one....but, I do get a little passionate when I talk about nutrition and exercise, but that has more to do with the fact is has been such an enjoyable part of my life...not so much because of BC.
I think diet and exercise are ESSENTIAL to MY peace of mind. But I know plenty of women who get along just fine without it.
Also, if only fat chicks got cancer, none of the women in my tx center would have it! I've never met such a bunch of healthy women..even at the gym!!
People imply you have cancer because you're over-weight? People have implied, and frankly said outright, exercise caused mine, and then when the chemo damaged my heart, said it was because I exercised throughout chemo....WT?
So anyway, welcome and hope you find the support you seek here.
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Thankfully, no one has openly expressed any opinions as to why I got cancer, and I am 30 lbs overweight. I have been asked several times if I've ever taken hormones, but I haven't. I might have if I was in menopause, I don't know. I won't now for sure. You can drive yourself crazy trying to figure out if there was anything you could have done differently, the truth is, "Shit happens". I know of 4 women who all were diagnosed with Alzheimers in their 50's and there is no known reason. I'd take BC over Alzheimers any day.
As for the negative node involvement, I was negative, but I don't think I posted a thank you to God. Although I do thank him repeatedly just for still being here. I certainly understand your viewpoint Missy. I wish I was stage 0 and didn't need chemo, but I also read the postings on the Stage IV threads sometimes and feel guilty for my relief at being a Stage I. But none of us know what's around the corner. Many of those Stage IV's started out as Stage 0's and 1's. I'm just thankful for this site and all the positive support, advice, and shared experiences I've found here. I try to stick to the more positive threads, the negative threads are out there too.
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pejkug you must be doing something right. 60lbs is a big deal to lose! Another trick to eating healthy is get good spices. Spice up the taste rather than add salt and sugar. Salt and sugar are cheap that's why companies used them to flavor food. Also the more fresh , non-pre-prepared food you can eat the better. If it comes prepackaged in a box, bag, or container think twice. Slowly reduce portions. If you do it too quickly you'll be hungry. Be smart about in-between snacks. A handful of almonds might be high in calories but they are better for you than chips and will fill you up so you won't eat even more later.
Don't get discouraged if the scale doesn't move for a while. Initially you lose lots of fluid. After that things can slow/stop for a while then all of a sudden it starts to come off again.
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I understand how people feel about node issue but I'm happy when I see someone who has a much smaller tumor than mine and is an earlier stage. When someone says "Yay! I'm only a stage I" my reactions is happy for them. On this site it's not all about me, it's all about us. I'm happy when someone doesn't experience the nasty nail lifting I had. I'm happy when someone's hair came in straighter than mine (although a little jealous
) I wish everyone a better prognosis and easier journey than me. Why? because I'm here to support and cheer them on.So maybe I don't know exactly how a node+ person feels but having one of the larger tumors I think I can get an idea. (6.5cm including the invasive part). I so wish the invasive part was less than 5cm but that's not the card I drew.
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