TRIPLE POSITIVE GROUP
Comments
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Thank you Special K. As always very helpful.When I asked how they knew chmo was working, I was told by the onco nurse that they found no negative markers in my blood and that was good. Then she said but I neverhad any in my blood before treatment either!
My friend who is 12 years out from early stage triple pos bc told me that after 4 years on taxol she had a thickening of her uterine lining and asked her onc if she could stop taxol. The onc switched her to a different med...begins with an A I think that you have to take forever. She said she tolerates it very well.0 -
Did ypu ladies have the Oncotype DX or Mammaprint tests? I had the Mammaprint but the BS just told me it confirmed the pathology. Did any of you go further into the details of either test? Some days I don't even know if I want to know or if I'm ready to hear.
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Ashland, I think you're confusing taxol with tamoxifen.
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You're right Kay...better for a confused already, chemo brained person to wait until after her morning coffee to post! Thx!
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Judy just to clarify getting a mastectomy does not automatically mean you won't get rads. It depends on location, nodal status, size and a few other things. Usually women with tumors my size get rads even though I had no nodes invaded. I was in a gray area so my rad onc gave me a pass. My BS thought for sure I would get rads due to size. (Typically tumors over 5cm do). BTW I was small busted before and my tumor was only .75cm from the posterior region but the margin was considered clear.
I'm willing to bet if I wasn't doing Anestrozole for 5 years or if I didn't do chemo/herceptin I would be getting rads.
Layla I was a 34 A/B (not very full) before. I'm now a 34D (sometimes a C but usually a D). Yes you can go bigger. I am a little bigger than I expected but everyone says it's proportional on me. Odd since I'm on 5'6", 130lbs with a small frame wearing a 6 on the bottom and a 6-4 on top.
Ashla my onc star ted me on an AI (Anastrozole) instead of Tamoxifen assuming my cycles would not come back. She tested my esterol levels to be sure. I am not on AI for ever though. So far the plan is just 5 years. March makes one year for me.No oncotype or Mammaprint.
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Mom,
I also had 4 positive lymphs. Are you going to get radiation? It is recommended now for 1 or more positive nodes.
I understand you have a TE. So do I, and I took radiation. Don't let anyone freak you out about losing it.....my plastic surgeon said the very latest studies show less than 30% of women have problems with TE and radiation because rads had become so much better.
Anyway, I finished rads over the summer and am currently getting fills for my exchange this summer. (Though I recommend you get fully expanded before radiation..I had some healing issues so wasn't able to do that) If you have any questions, please feel free to PM me.
And remember this about staging. It's kinda bogus imo. There are three ways for cancer to travel:
1. Blood
2. Tissue
3. Lymph system
There is no test for blood, and our technology (PET, CT, etc) can only pick up cancer above a certain size. I don't put much credence in the whole staging thing. Especially since I am in tx with Stage 1 women (or so we thought) who now have mets and STILL have clear nodes (according to scans).
Most of my medical team agrees that cancer is cancer. Once it is there, especially Her2, they just "can't" know for certain if it has traveled. Which is why we get chemo.
And you also have to remember when looking at prognosis that most of those were done BEFORE Herceptin.
Try not to get bogged down in the whole staging thing. I know it's hard, but it is also not a very accurate system. Why let something less than stellar steal your peace?
Much love to you.
T
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Thx lago...you and I are just about the same size and weight but I always big boobs...34 D... which I've always been bothered by...now more than ever!
What do they radiate if you get mastectomy? The underlying muscles? My tumor is on the left side ...one oclock position close to the surface...which is one of the reasons I have for considering bmx.0 -
Asha I was given a pass on rads but in a gray area. I'm sure they radiate the area where the tumor was removed and maybe the incision to be sure no strays were missed. My tumor was on the left side between the 11 & 2 o'clock position but closer to the chest wall (hiding under all that dense breast tissue). I didn't have a choice. Big tumor, small breast is not a candidate for lumpectomy. I knew I wasn't going to have that choice when my radiologist told me how big my tumor was at my biopsy. I was OMG that sounds like 1/3 of my breast! Yeah I was a little shocked.0
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Any of you ladies have a new dietary regime during chemo or after? I've tried not to do anything too drastic because there seems to be lots of conflicting info. I ate red meat only occasionally prior to dx but I loved cheese. Gave the cheese up almost completely. That was a major source of calcium for me since I never drank milk. Going really light on carbs because there are multiple links tying high carb diets to bc . Started taking flax with my daily yoghurt....which I always liked but eat faithfully now to help stomach issues during chemo. I add strawberries and blueberries to the yoghurt. I drink cranberry juice daily to help my urinary function. I eat walnuts everyday...just a few. I was drinking a cup of green tea everyday but someone said her onc said it may interfere with chemo. A px in my chemo office said her dr to her not to eat yams because of something about estrogen.
Any recommendations?0 -
Ashla my theory is if you eat healthy with proper proportions and ex exercise you will doing the correct thing. Meat of course in moderation. I'm sure eating meat/poultry that hasn't been injected with hormones and antibiotics would be best but that doesn't fit with my current budget.
I gave up diet soda because it's bad for you bones. I have about 6 cans a year now compared to 1-2 a day. I also recommend prunes or plums for you bones. There had been a lot of press on a study that said they are good for bones. I try but I find they bloat me.
All berries are good and full of antioxidants. Do stay away from pink grapefruit while doing Herceptin.
I never ate too much crap. Couldn't tell you the last time I had a potato chip or a Dorito. I do like those dark chocolate covered raisins they sell at the grocery store next door. Everyone had a weekness. I also make the best cookies… Just tend to make them for other people so they are not in my house.
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Good advice TonLee.
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Lago...i am definitely onsidering increasing my exercise regime when my chemo is over and the weather improves and there seems to be alot of evidence that yoga helps with the psychological issues of depression and anxiety many of us face.
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Exercise is such a choir. I will admit I don't love doing it (although power walking through the park is nice). I do love the way I feel when I'm done so it is worth it. Get yourself some great music to listen to when you are doing aerobic work outs. I am walking in the winter cold. I just dress properly. I will admit though after chemo 5 I stopped working out. Started again about 5 weeks PFC. My thighs were so stiff from chemo then week 5 PFC it started to greatly improve. Also had taxotears which made it very hard to walk in the cold/windy days of Chicago.
Seem so long ago. I'm almost 1 year PFC!
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I ran into the issue of no Adriamycin chemo with Herceptin due to combination of possible cardiac side effects. Not tolerating Taxotere makes it a challenge. My MO thinks Herceptin is the most critical treatment for me, and I will be on Tamoxifen with it after rads. After a week off it's back to the MO today......
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Hi guys,
Happy New Year! TonLee, love the new avatar. I need to figure out how to do one.
Ashla, as far as diet....I changed a good bit. I eliminated meat and most dairy. I LOVE cheese. I eat a little greek yogurt. I have 3 young kids, so it has been challenging to do menus, but I usually cook for them...then have something different for myself. What I have found is that they adopted my regimen a bit. If I serve meat, they gripe because they now wind up with stomach aches ...and sodas, chips etc cause acne in my pre-teen and he now realizes that. I want them to make their own choices, but I frankly am tickled that hopefully, they are learning to be healthy on their own. The easiest thing I do is juice green vegetables at least once a day. If its too bitter, I buy that odwalla superfod green juice and pour just a tad in since it's loaded w sugar. And sugar...I stay away from. Not easy at all with that one!
I also exercise about 5 days a week, rather intensely...but I love it. I feel bad when I don't.
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Oh My, something new again. I felt frustrated after searching on this board. I felt a hard lump two days ago in the size of person's finger on my left lower side of abdomen. Had no pain in the place. Went to see my family doc yesterday and was scheduled for an ultrasound in Jan 11. she said it might a lumph node, which is definetely not what I want. I just finished herceptin in Dec 29 and now this. I will do some massage on it to see if it will shrink, or massage right now is a bad idea. Am also making an appointment to have a complete hyster soon. I read some post saying the mat could happen in abdomen and I hope this is not the case for me.
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Oh meglove, I hope it turns out to be nothing! 6 days seems like a long time to wait for an ultrasound - can they see you sooner? <<hugs>>0
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lago - sorry, should have clarified that better. I know sometimes rads are still called for even with MX if tumor is large or near chest wall. In my case, it was Lumpectomy w/rads or MX.
meglove - sorry, I hope it turns out to be nothing. I wouldn't massage it until after the ultrasound.
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Meglove: Thoughts and prayers out to you. Wow, that's a long time to wait for the US. We are here for you!
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meglove - there are so many things it could be - like a fatty deposit or something? Here's hoping for the best for you.
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I changed my diet pretty significantly, but I as a big junk food eater. I have tried to cut out as much white sugar and flour as possible. Cheated over the holidays, but am pretty much back on it now. I do eat fruit and make green smoothies using fruit, so I suppose I am still getting sugar, but at least it is natural. I also use organic whenever possible. I have not given up dairy, but I don't eat that much of it...organic fat free milk, some greek yogurt. Not much cheese, unless it is on a cheeseburger. No more fast food. I have completely stopped that, and I love it.
Concerning exercise...I like actual exercise...hate aerobic tuf, but I do it. I force myself to do about a mile on the elliptical with some biking afterwards or a couple of 15 minute miles on the treadmill. I watch the people in the spinning class and think it just looks awful. lol
Lago-I can't have grapefruit while taking tamoxifen either. Onc says it can make it less effective.
Ashla-I chose bmx because I couldn't stand the constant worrying if it would be in the other side. I had dense breasts also. Mine as also close to the chest wall, so even if I had done a lumpectomy, it would have required a lot of work. Honestly, I can't say the worry part has gone away. Now I just worry about it coming back as mets, and thinking if it does come back, I would rather it be breast related.
The mastectomy was not bad. TE's were not bad either, although I did end up with an infection, had to have them removed and start over, added about 4 months to the process. I was large breasted (full D) and wanted to be smaller. My implants are great. I would say I look like a full B, but the bras that work best are C's. Just hit the VS semi-annual sale today. So fun to be able to by the cute ones even if I can't wear them yet.0 -
Hi all, I went to a 2nd Oncologist because my Onc. refused to scan me, and I was vry umcomfortable with that. The new Onc. used to work for Mem. Sloane, and does not believe in their philosophy of "waiting for symptoms" to scan. SO HAPPY to say, my bone and pet scan just came back NED!!!!
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Congrats Missy! what a relief. Sorry I might have missed your previous post but wondering what made you think you need these scans.0
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Congrats Missy!
I can't get a scan either....very frustrating!
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My onc says as soon as I'm finished with Herceptin, she is ordering a PET and if they won't approve it, then CT scans like before chemo.
Congrats Missy.
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I had no scans either. Just chest CTs for rads set-up.
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Thank you TonLee and Meglove - I honestly just wanted the peace of mind, and I am almost a year PFC, so my Dr. and I, thought it might be a good time to "check on things". I had never had any scans, so this was a big sigh of relief day!0
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It is so weird - I guess it is all doc style points - I had a pre-chemo PET and a post-chemo PET. One does get scanxiety, but it is so great when the report is good. TonLee, pejkug it suprises me that with positive nodes they would not scan you, what's up with that?0
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My onc said that I was early stage and should do well. We shouldn't go chasing cancer.
On one hand, I agree...but...0 -
I was glad my MO likes to scan - it seems that information is good and helps inform treatment choices. We have all seen early stage ladies with no nodes go from early stage to stage IV, especially triple pos ones, so not scanning seems kind of like an ostrich mentality. I think it does a lot for our outlook and mental health to know if anything is lurking. On the other hand, if it is small and hiding it won't show up on a scan anyway, so... back to the style points!
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