TRIPLE POSITIVE GROUP
Comments
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Congratulations, dragonfly, on the great news!
I'm eating a piece of dark espresso chocolate in your honor!
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Lago - that sounds like a great recipe too, saving that one. We got a lot of fresh tuna here.
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Hey TonLee and all,
Here is the abstract for that Tamoxifen study...
A matched case–control study was conducted using the Austrian Breast and Colorectal Cancer Study Group Trial 8 (ABCSG8) that randomized postmenopausal women with estrogen receptor (ER)-positive breast cancer to tamoxifen for 5 years (arm A) or tamoxifen for 2 years followed by anastrozole for 3 years (arm
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Cases had disease recurrence, contralateral breast cancer, second non–breast cancer, or died.
For each case, controls were identified from the same treatment arm of similar age, surgery/radiation, and tumor–node—metastasis (TNM) stage.
Genotyping was conducted for alleles associated with no (PM; *3, *4, *6), reduced (IM; *10, and *41), and extensive (EM: absence of these alleles) CYP2D6 metabolism.
Results
The common CYP2D6*4 allele was in Hardy–Weinberg equilibrium.
In arm A during the first 5 years of therapy, women with two poor alleles [PM/PM: OR, 2.45; 95% confidence interval (CI), 1.05–5.73, P = 0.04] and women with one poor allele (PM/IM or PM/EM: OR, 1.67; 95% CI, 0.95–2.93; P = 0.07) had a higher likelihood of an event than women with two extensive alleles (EM/EM).
In years 3 to 5 when patients remained on tamoxifen (arm A) or switched to anastrozole (arm, PM/PM tended toward a higher likelihood of a disease event relative to EM/EM (OR, 2.40; 95% CI, 0.86–6.66; P = 0.09) among women on arm A but not among women on arm B (OR, 0.28; 95% CI, 0.03–2.30).0 -
Thanks Jenn! I really appreciate it. Will look this over later, on my way out the door for the day!
Have a great day ladies!!
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dragonfly - so, so happy for you!!!!
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Hello friends,
I just finished my last chemo a week ago and I wanted to thank you for your advice on how to manage my side effects. I lost 95% of my hair and I am now waiting to see it grow. I did not loose my eyebrows yet. Just a few eyelashes. My last chemo was at a lower dose as I did experience a lot of fatigue and some neurophaty on my fingers. I hope the neurophaty will go away soon.
I will start taking Biotin to help with the hair growth.
I have a question: since this is my second time around and Tamoxifen did not work for me my oncologist is suggesting to give me some injections to stop my ovaries from function and put me on aromatase inhibitors. I am 38 years old and still menstruating even during this chemo. I am so scared of this injections. I heard they are harsh. My instinct tells me to have a Ophorectomy instead as I am not going to have children. We would like to adopt a baby.
Can you please share you thoughts on this ? I am meeting with my oncologist soon and I need to make a decision.
Thanks
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dimdani I just got my period back after a 14 month absence. My onc gave me a lupron shot to shut down my ovaries...so far so good. No real SE just my hot flashes are back (they disappeared right around the time my period came back) and they are about the same as when i had them during tamox alone. Other than that i don't really notice any other SE - but i've only had one shot. I wanted to start with lupron first to see how i did and then consider an ooph down the road. If you feel strongly about the ooph then do it - my onc said she would be fine with either decision
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dimdani a friend of mine got her 2nd diagnosis when I was going through chemo. First time DCIS but this time IDC. She didn't need chemo either time but can't take Tamoxifen because of blood clot issues. She's been doing the Luprin shots with Anastrozole. I think the first one she had her share of hot flashes but overall I think she's doing really well. Just stiff in the morning. She's a year younger than me so she would have started when she was 48.
I assumed the worst when I read about all the SE from hormone therapy. I'm finishing up year 2 on Anastrozole this March. I don't even thing about it anymore. I hardly notice the stiffness.
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Evening everyone: Had my 3-month onco appointment and thought I'd drop to every 6 months now but still on the 3-month 'plan' and I finished Herceptin #10 (and final) November 2011. That's ok by me because how else will I continue to track my blood levels (and Vitamin D). It was down to 65 this time versus 70 which is still good so I stay on the 3000 IU's per day. All other blood work fine. I complained about the rib pain which she said is from the Arimidex which I pretty much knew and guessing it is better than the alternative.
We talked about the Arimidex and 5 versus 10 years and all the studies out there....one shows 5, one shows 10 years so it is all just a big waiting game. 0 -
Hi Arlene and everyone -
I had my two week post-chemo appointment today. My WBC has gone down from last week. It was 1.9 at the one week post-chemo appointment and 1.8 today but one of the MO's assistants said they mainly look at the granulocyte level and mine was either 3.0 or .3 (I just got a glance at the blood work - the nice thing is - they have a lab in the office and within minutes of the blood draw you know your results - maybe this is how all oncologists offices are and I'm just new to the rodeo
Oh, and I gained SEVEN POUNDS in a week! And he doesn't think it's water retention but I'm going to take a Lasix tomorrow anyway. Good GRIEF! Food sure has tasted good since the queasy period and granted, I've eaten more than usual and more carbs than I typically do.
I've also been walking faithfully every single day in January so part of me wonders if it could be muscle mass building up but surely not seven pounds worth! So, I'm annoyed with myself! Really annoyed!
The MO said something about possibly having to delay the chemo next week (I sure do hope that's not the case because I have this all calendared in until September (when things need to be adjusted for a vacation) and as much as the next chemo doesn't thrill me - I would just as soon get to getting on it (as my dear dad used to say).
My starting WBC was over 6. I have no idea if that's normal, low or high. I guess I should open a Dr. Google tab after I post this.
This is day 15 (using the infusion day as day 1). Oh, and I guess I'll have to have the Neulasta shot the day after chemo next week.
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DimiDani - congratulations on finishing up with the chemo!
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Lee, I have been going up and down in weight since I started chemo. At least I haven't gotten above where I started. Things taste so good when you can taste them again!
On the labs after bloodwork, try asking them for a copy of the results if you want to refer to them later. I have gotten a copy each time, and the normal ranges are printed alongside my numbers.0 -
Lee,
Don't be that disheartened about the (supposed) weight gain. It may not be real weight. It may have been your clothing, or that you just drank lots of fluids before they weighed you, or even that it was a different scale. My weight went up and down about 5 pounds depending upon when they weighed me, how much I drank and which scale they used.
I hope your numbers improve so that chemo isn't delayed. Getting the neulasta shot is probably a good idea. It definately keeps your white count up, and helps to prevent you from getting sick.
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LeeA I was on a small amount of diuretic after chemo because of water retention. Seemed to be under control then started up again. My PCP says it can be from Anastrozole too so I'm back on a small amount. On the weekends if I eat salty food I can gain 3-4 lbs. My calves and my middle bloat up.
But on chemo I gained 7lbs from fluid. As soon as I stopped taking the steriod I turned into Violet.
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Thanks, everyone, for the input! As always, it is greatly appreciated!
Oh yeah, I just read something on another board that kind of freaked me out . . . I have never consulted Dr. Google regarding the KI67 (?) score. I just didn't want to know because for the first time in my life, the more I know on the intense research level - the worse I feel about things (so for the most part I've been in ostrich mode when it comes to the particulars).
Anyway, I just saw it (KI whatever it is) described as the likelihood of the cancer "traveling."
Off for a walk. In the dark. After that - soup (cooking) and puzzle work (I bought a 1000 piece jigsaw puzzle the other night and we have it all spread out on the table).
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Wow keeping up with all of u is so difficult--but things don't seem to bad. Dragonfly? everything sounds good for u and as I'm reading I was checking to see if zi was on the What's for dinner thread by mistake--It all sounded good tho. Since I don't cook iz'll pass the recipes along to my sister she still cooks sometimes and always looking for something different for her salmon.
My tests got rescheduled for next week cuz I was to sick to be in the hospitl??? At least I went to my Onc Mon. Yay I don't have to see her for 3 months--things are going good--But my SE are ruining me hahahaha it's OK tho I'm getting used to them--she just ordered some blood work this time, I hae no idea what for and I like that I can go anytime so I have to be there next week and It take like 5 mins to get it done. I used to have to make an app'tbut not at this hospital now with all this new computer stuff. It makes things so much easier doesn't it?
Well maybe I should try to sleep after this hot flash leaved me. ugh
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LeeA,
My Ki67 score is high and says "unfavorable". Same with my P53 score. All my doctors don't give that much attention, but I plan on asking my MO when I begin chemo on the 24th. If that's true about the traveling, then I'm sure I'll hear about using Cold Caps.0 -
LeeA - don't fret too much about the Ki67 - if your grade is 3 it is natural that this percentage would be high as well - take comfort from the idea that chemo works best on rapidly dividing cells - that is what Ki measures. I kept a copy of every weekly CBC - my MO also had an in-house lab for CBC, anything else (tumor markers, Vit D, CMP) was a send out, but I am fortunate that my center has online records so I can go to the website and pull up all reports, including scans.
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SpecialK - thanks for putting it into perspective (i.e. grade 3). I manage to stay pretty positive as long as I don't read little tidbits that put me into an ocd tailspin (i.e. traveling with the KI thing).
Rhonda2 - I was discussing hair loss with my MO today. I've never asked him about the cold caps but I have seen a cooler in the infusion room. Another California BCO member also goes to the same oncologist and if I recall correctly, he's not that crazy about them (cold caps). It's too late for me - I've already had one TX.
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I think I may have mentioned this on this forum, but MO was not for cold caps, felt there was an increased risk of skull mets? Plus, I think I must just be naturally lazy - it sounded like way to much work to keep your hair, when it's going to grow back anyway, and I really enjoyed just kicking back during treatment, snacking, chatting, sleeping.... can't imagine having to do that work too.
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I've enjoying snacking, too!
Way too much!
Was anyone else ravenous once the icky feelings went away (around day 7 or so)?
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Yes, especially unhealthy stuff.
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My ki67 score was also over 20%/unfavorable too. It just means your cells are dividing fast which I believe is common for HER2+. According to Dr. Love it appears that some of the tumors don't respond well to hormone therapy… but do respond well to chemotherapy. So IMO either the chemo or the AL will get or got my cancer.
I don't feel my onc would have prescribed this for me and risked my bones if there wasn't a statistical significance in my favor it would work on me. Doesn't mean for sure but it appears more of us do well with hormone therapy than not.
LindaKR I too felt too much work, $$, and cold for me to do cold caps. To be honest my hair wasn't one of my biggest worries. Now if they had eyebrow caps I would have done that.
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Dim,
I had the Ooph. But if I was 38 I would not have had an Ooph first. I'd have tried the Lupron shots first. Estrogen is vital to bones, muscle and heart. Here is my thinking: If I did the shots, and had really bad effects from no estrogen, I could always stop the shots, have the estrogen return and benefit all those organs, and hope Tamox. worked. Essentially, shots can be "undone" while an Ooph can not.
Oophs have their own set of SEs. And none of them are good. Better than cancer? Yes. But I don't know if I will feel that way in 20 years.
The shots also can give you a "trial" run on what having an Ooph will be like. If the SE are unacceptable, then you can stay on Tamox and stop the shots. My Onc actually didn't recommend the Ooph. He believes in Tamoxifen. But I wasn't willing to take the chance that Tamoxifen wouldn't work for me...and there were no reliable studies at the time to determine if it worked. My gut told me my cancer was estrogen crazy. In fact, I feel controlling it was more important than chemo.
All gut, so could be wrong. But a strong enough feeling I was willing to sacrifice body parts! lol
Hope that helps.
LeeA,
If you don't want to beat yourself up all during chemo, and I have seen it here time and time again....start tracking your calories. I know it is a pain, but there are free sites out there that do this (like fitday.com).
The reason it is important to do this during chemo is twofold:
First, a pound is 3500 calories. If you track your food, no matter what the scale says, you will know if it is "real" fat/weight, or just fluid retention (not real).
When I was in chemo my weight fluctuated by 10 pounds! I'm not kidding. Crazy. But I took GREAT comfort in knowing it wasn't real weight. I looked at my food log and saw that I was not eating over my calorie limit, in fact was getting a small deficit each day...so I knew once the fluid dropped, I'd not only go back to pre-chemo weight, I'd probably end up being a few pounds lighter.
That is exactly what happened. It was like a present! lol
Second, keeping a log is important because it helps you "see" nutrition holes. Fitday gives you the nutrient content of your diet..protein, fat, etc. During chemo and rads it is ESSENTIAL to get as much protein as you can stomach...I shot for 100g a day per dietician. Why? Protein is the building block for every cell in your body. Chemo destroys cells, especially in the GI tract. How can you rebuild the cells there, and in your muscles without protein? If you can get nothing else down, get protein in there so your body can repair itself!)
There will be days when you just can't force yourself to eat 1500-2000 calories (depends on your activity level). Keeping a log lets you "catch up" on the days you are hungry WITHOUT guilt. And I "hear" the guilt in your voice here.....who needs that on top of everything else?
I was STARVING the days I took steroids. I couldn't get enough to eat. So, I made up a bunch of chicken chili, frozen bananas (for faux ice cream), and other filling clean type options (Spaghetti Squash, 40 calories a cup! A hungry girls best friend!! Eat two cups with every meal and I guarantee you won't feel hungry!) When I had those fast options on hand, I was less likely to make a pan of brownies. (Though I do love me some brownies! lol I indulge a couple times a month.)
The reason so many women gain real weight on chemo is in large part because of the steroids. And my own personal opinion, most women experience some sort of depression, even if its just a little (I know I stopped taking pleasure in things I generally love to do and didn't even realize it until I started doing them again!). And that mix, sad/depressed/dark thoughts with steroids...that's a double whammy.
Last. You don't have to gain real weight on chemo. I didn't gain an ounce. If I can do it, anyone can do it. Just apply that stubborn nature all women have somewhere in their body toward keeping track of what you eat. It gets rid of guilt, feeling bad about yourself, etc.
And it frees up your time to worry about other things. ;P
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Lago, Penguin actually does have eyebrow bands...but I hear that the cold is so painful on that area that most who try it can't continue. I did the cold caps (on my head!) for 12 weekly treatments. Thankfully I'm old enough to have a couple of retired friends who could go with me each week to change the caps. We had fun and it made the time pass quickly.
Ton lee, I did gain real weight on chemo, and am finding it hard to get rid of. So easy to gain and so hard to lose! I needed to lose before chemo, even more so now. I need someone from the food police to take up residence in my house.0 -
I WILL HAVE A PORT. CAN I PUT THE ELASTO GEL CAPS ON MYSELF DURING CHEMO?
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Patin,
You're in good company. I've read women are more likely to gain during BC tx than not.
Because our tx (during and after) eats up so much muscle...our metabolism slows waaaaay down. Unless you do something to gain that muscle back, chances are pretty good you'll never lose it with diet and cardio alone (unless the cardio is weight bearing as well).
I know that makes me popular ;P But it's not my opinion...it's fact, based in science. If it were up to ME, we'd gain a pound of muscle for every ten pounds of chocolate we eat...lol. I'd look better than Arnold during his hey day....buwhahahahaha
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Funny Lago - I did miss my eyebrows the most, and they didn't grow back too well either.
I lost 15 pounds on chemo, I was over weight, but carbs and sweets tasted horrible, actually beyond horrible for me, so lived on protein, veggies, a few fruits and yogurt! That has pretty much followed me post treatment too, except at Christmas this year. After chemo I lost another 15, and have pretty much stayed there.
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Pbrain-- we have not heard from you. How are you doing?
On the Ki67 I asked my doctor about it and she said she don't think they did that on me since I was high er+ pr+ her2+ I have no scoring other then the ER+ PR+ %
I would have liked to know...
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My KI67 just said intermediate - which my MO said meant grade 2
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I think the Ki score is similar to the grade. I never got my Ki score but I'm grade 2. It seems like many of us who are HIGHLY er/pr+ are grade 2.
LeeA, when I started to gain weight on chemo, the next time I felt up to shopping and cooking, I just loaded my kitchen with a whole lot of high protein, high nutrition foods to snack on. If you're not up for doing the counting calories thing a la TonLee. I did it for a brief while. It wasn't my cup of tea but it did help to do it even for a short while to get a sense of the flow of it. Basically, it added up to, if I went for a swim, I would burn off enough extra calories that I could still eat a lot, as long as most of my calories came from healthy stuff. I've been spending a fortune at Whole Foods since I started chemo so I could get prepared foods that were really healthy and organic etc. Once I'm done with all this treatment crap I can do a lot more of my own cooking. I felt like I rebounded a lot faster if I was eating healthy -- you'll notice the difference more than you would under normal circumstances.
Forest, I think you will need a friend there to help you with teh caps, but you'll want a friend there anyway! You can get a lot more info on the cold caps page.
Some of you didn't mind/don't mind going bald, but it would have been really traumatic for me and it is really great that when I'm done with treatment on 1/23 (last day of rads), I will more or less look normal. And that I looked normal all through treatment, which was really handy when you're going on a hike or swimming or something. I mean my eyebrows and lashes still have a ways to go but there's makeup for that. Which is a hassle but seems like a lot less of a hassle than a wig!
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