TRIPLE POSITIVE GROUP
Comments
-
Rozem good info---I recently got an ultra sound on my heart and they found (I don't reember) but it wasn't there before and at this point it's nothing to worry about (that's why I don't reember) but I did ask about a muga and my card wanted the other and of course they really don't know if it's from herceptin or just happening--so that makes me think what if---how will they know randomly if there is a problem--My mugas always stayed the same never waivered 70 that I remember cuz it didn't sound good to me then-I mean 100 sounded good 70 sounded like I was just passing but I was told that was fine so I stayed on it for a full year. As u know I don't read anything just what I read on here so I just go along with what they say. March 8th I get an MRI on my lower back they think there might be more cancer ther, but I don't think so so I'll do what they want and the down my throat and up the ass test is postponed because of this stuff so again I just do what they say. LOL
0 -
ashla, we had italian sausage and pasta the other night and I could barely eat the sausage. I actually only had a couple bites of it and was done. My taste for certain foods has changed, and now of course I look at all foods with a skeptical eye. Like, "will this give me cancer??" I'm trying to avoid artifical ingredients and I know sausages are usually made with preservatives and nitrates so I think that is why I didn't want it.
0 -
camillegal "and the down my throat and up the ass test is postponed" Endoscopy (also called throat cam)? Colonoscopy? Hope the MRI finds something other than cancer.
steiner18 I've eaten pretty healthy most of my life. I never ate a lot of stuff like sausage, hot dogs, red meat etc. Sure I ate some but nothing compared to most people. I'm not the sit down and have a steak or roast beef kind of person. I stopped doing fast food back in the mid 80's not that I ate that much to begin with. So it wasn't that stuff that gave me cancer.
0 -
LeeA, you shouldn’t try to lose weight while on chemo!
Ang, yes I have had breast pain in the “good” breast – not often and rather random, but I had it quite recently and I JUST had the scans that said I’m in the clear, so my guess is it’s nothing to worry about. Obviously if it continues you should check it out just in case.
Rozem, the trial I’m on calls for muggas even after I’m done with the h/p (pertuzamab/placebo) but I said to MO that I didn’t want them and he agreed that there was no point. You either have herceptin damage or you don’t, and if you do, there’s nothing really to do but just wait. Is my understanding.
Gratitude, there’s obviously no rhyme or reason to who gets this, but if you eat a diet that has a lot of industrial agriculture products (and who doesn’t), you’re likely to have an excess of omega 6 v. omega 3. At least that’s my understanding based on the Anticancer-A Way of Life book. Obviously not everyone gets cancer, but I’m conscious of that issue in what I eat. I’m also taking supplements.
Walking, I was on a wed. schedule like Lee and Sat. was my worst day.
TonLee, I wouldn’t mind eating vegan, or at least a lot more vegan, but it seems like it’s hard to get enough protein in all the time without having any soy products, which we are told to avoid. Your thoughts?
Camillegal, my thoughts are with you -- if you're instinct says it's not ... you know, then it probably isn't. Keep us posted please!
0 -
LeeA- I find broccoli rabe occasionally at Safeway up here in Oregon, but it's much easier to find at Farmers Markets, or organic food stores. It's sooooo good, wish I could get it more often.
My onc also said high Vitamin D was fine during chemo, I took 5000 mg daily. My D was 12 just before diagnosis. My PCP had mine checked, she does it as part of regular blood tests now, she's pretty up on things.
0 -
Cypher,
The latest research shows women...who never had heart issues while on Herceptin...having it all of the sudden 5 years out,,,and it doesn't seem to plateau...the study recommends being monitored 5 years out...we linked it somewhere on this thread...I don't have time to dig it up right now.
Ok. Protein. You all probably know I am a big protein proponent for muscle tissue. So you asked about protein on a Vegan diet. I just ordered this:
http://www.mynaturalmarket.com/Sunwarrior-Protein-Raw-Vegan-Vanilla-Gluten-Free.html
Since you can only absorb about 15-20 grams of protein at each sitting...you don't have to purchase vegan protein powder. Beans are a great source, nuts, and my favorite air popped popcorn! Doesn't look like much at first, simply 1 gram per cup...but I eat like 10-15 cups! lol So it's a good one;)
Bren,
I will let you know what I think about the book. We're in the middle of a remodel, so I don't know when I will have time to read it...just bits and pieces.
I'm mostly interested in the vegan lifestyle because it is healthy and something I've never done before. It looks challenging and I like that. Don't know if it is doable for me though. I'll read the book. Perhaps all I need is motivation to try it
LeeA,
I hate to beat a dead horse. But weight gain during chemo happens to everyone..mostly because of the steroids. That is why I recommend logging your calories. That way you know no matter what the scale says, if that weight is REAL. My scale was up 5-8 pounds at times, maybe more, I honestly can't remember. But I knew it wasn't real. And I was right. Within a few weeks, without doing anything ... I lost it.
Juicing. Ya know, that is an awful lot of calories without fiber. To determine the calories for juicing, simply multiply the fiber in the food by 4. Subtract that # from the total calories.
For example a med apple (3" across) is about 95 calories with 4 grams fiber. So 4 gms fiber x 4 is 16 calories. So the juice of the apple is 79 calories.
So while I will juice for my kids. I probably won't indulge too often. And all that stuff about getting a power shot of "micro nutrients" from juicing....well, I don't buy it. (But I will test it and may change my mind!) Sure I might get those nutrients, sure. But I don't know that it is necessary for good health. Most people on the planet don't have a juicer, and ancient man certainly didn't sit down and consume $30 a day in produce, every single day.
I think some of this stuff is great. But some of it I take with a grain of salt. lol
That's it for now...back to work!
0 -
Hi all:
I had an oof in Dec 2012 and have been on Tamoxifen about 2 1/2 years. I am meeting with my oncologist tomorrow to discuss making the move from Tamox to an AI since, I hear, studies show good outcomes for those who switch after a couple of years on Tamox and have had their ovaries removed.
Are there specific questions I should ask or things I should be concerned about with making a switch?Anything I should know about AI vs Tamox? Thanks!
I was ER/PR + (ER 100%) and HER2 + with a lateral mastectomy, chemo, rads etc.
Thanks
0 -
gemini - answered your question on the other thread - the one about hormone therapy for Her2+ - was not sure if you saw it.
0 -
This looks seriously yummy!
0 -
Looks good, Pbrain. I just bookmarked it.
0 -
Speaking of food....So my Dr. recommended Femara for me following 2 1/2 years of Tamoxifen therapy.
I've put on weight since my last visit in November (when I was seriously down.) I've gotten a little lazier, even though I've been on a primarily Mark Hyman diet. My Dr. warned me my that metabolic rate might continue to decrease on Femara, so I really need to watch my weight. My diet currently looks like this on Dr. Hyman's diet:
Morning Power Smoothie: Berries, Almond or Coconut Milk, Optional: Almond Butter, Coconut Oil, Chia Seeds.
Lunch: 1/2 cup brown rice, 1/2 veggie broth, 2 cups veggies
Dinner: Same
I've been eating added fat, in the form of almond butter, almond milk, hemp milk or coconut milk, coconut oil, olive oil. So I'm going to try to cut these out.
Thanks all!
0 -
Gem,
Fitness and sports nutrition is an area I've studied extensively throughout life. Combined with the BC stuff...trial and error, I feel I have a certain degree of knowledge. So take it or leave it, but here it goes......
Just looking at your menu...your metabolism has likely slowed, not from age, or Tamox (though they do contribute) but for lack of protein and calories. I don't know how tall you are, but generally speaking, anything less than 1200 calories a day slows the metabolism to starvation mode if done for more than a couple days. (Unless of course you are under 5 foot tall!)
1/2 cup brown rice is only 118 calories.
Healthy women start losing 2.5 pounds of muscle a year at age 35. (Women in BC tx lose much more than that.) Even if you are doing weight bearing exercises (this includes weight lifting, push ups, walking, running, etc) you're not consuming enough protein to maintain muscle mass, let alone build new muscle. So you're still losing muscle.
Again, you can google protein intake calculators and input your data for how many grams you should get a day. Fat, up to 35% of your total caloric intake is considered "healthy." But with so few calories, you're probably getting too many calories from fat. (Meaning, some of these calories would be better consumed as protein.)
You are starting Femara? Femara is really really hard on the bones. I recommend a base line DEXA bone density scan to determine where you are..and so it can be monitored over the years. The only thing that can help save your bones at this point, besides increasing calcium/mag consumption, is weight bearing exercise. But again, if you aren't consuming enough protein (the building block for cells in the body, essential for muscles)...your muscles won't repair and your bones will suffer for it.
EAT woman! lol
0 -
Tonlee...the Breville I have came from Macys. Retails for 219. Currently on sale for $149. Mine has worked great. There is a new style of the same unit out that I like a lot. Also, there's Cuisinart one is the same price and is stainless steel housing. I work at Macy's home store part time, when I am not selling real estate. The Cuisinart one came in after I bought my Breville. I kind of like the way it looks better. Here is an amazon link.
www.amazon.com/cuisinart-cje-1000-1000-watt-5-speed-extractor/dp/B0030EH7S6
So...I am having my physical therapy for my "shoulder" pain, which they determined is really neck. He said it looks like arthritis from the basic xray. Wanted me to go to 8 PT sessions and take a steroid pack, which he thought would clear everything up.
Not only hasnt it changed, but I had a PT session yesterday and it hurt like crazy last night. I think it is worse. I am almost hoping he orders an mri just to convince me it isn't mets. It is a dull ache when I take a deep breath, and then sometimes, it will be a really sharp stab. I actually dug out an old muscle relaxer from my TE days last night to see if it helped. It did help some.
0 -
fluff, I have noticed for the first time that I am having more pain on days when I swim. Actually not the days, but I wake up in the morning sometimes with hip pain or that numbness/tingling. I JUST had a bone scan and a CT scan of my abdomen a few weeks ago and got the all clear, so it's probably not mets for me. It might not be a good exercise regimen for you, but it doesn't sound worrisome to me. No harm in getting an MRI though.
Gemini, yes, EAT! That is very few calories and very very little protein. It's not good for you.
TonLee, I rarely like the flavored protein powders. I'll check that out thoguh. Looks like a good one for smoothies etc. Re the 5 years out thing, the thing with the mugas/ejection fraction is, even if I were to develop a problem later, it doesn't look like they can do anything about it so is there a purpose for the test, in the absence of symptoms?
0 -
Cypher--in the studies for herceptin on the heart--does it say exactly whst the problem would be dire ctly from the herceptin--is it actually the muscle itself?
0 -
Hey ladies!
Just got my MRI results yesterday! Not what I was expecting, they found two more tumors in my left breast with the original lump and another in my right breast! Needless to say I had a very depressing day! My Dr and I think bmx is my best option. I should be getting a surgery date today. Praying for next week, I can't take much more of this waiting!
Angie0 -
Angie sucks they found more but better now then when the go in there. I know in my "good" breast the MRI found several suspicious areas. One ended up to be a small amount of LCIS. I did the BMX and glad I did. Once they do surgery there isn't a lot of waiting around but I know what you mean. I know I did lots of errands and house cleaning before surgery. Once you have surgery especially nodes removed on both sides you won't be scrubbing floors, washing windows or pushing a vacuum for a while. For several weeks I opened the fridge door with my foot.
0 -
Cypher,
The reason they recommend you get a MUGA even with no symptoms is because EF issues, which can lead to heart failure, are often asymptomatic. And many of the symptoms women have...are attributed to other things...like fatigue.
I didn't have "Real" symptoms until the damage was already done and EF was falling below normal.
Thanks Fluff!
0 -
Thanks for your input Lago! I am doing several things around the house and have also been stocking up on stuff, food,etc. I'll update as soon as I get my date of surgery!
Angie0 -
Angie be sure to put things in your bathroom no higher than your head. You will not be able to lift your elbows above your shoulders.
0 -
Angie 'm so sorry u have to go thru this--but u sound like u'r doing the best thing for u. And I know this isn't comforting but it's not painful at all to hae this done. But like Lago said u'r reach will be different for now. And take u'r time ealing.
0 -
Lago: for how long can you not lift your elbows above your shoulders? My surgery is scheduled for Mar 21 and I'm trying to get my house ready.
Also: I finished chemo 3 1/2 weeks ago. My surgery is, like I said, Mar 21. Then radiation. When typically would tamoxifen be prescribed? My MO and I were supposed to talk about this today but I got snowed in and couldn't get to my appointment. Now I won't see him again until after my surgery.
Also also: my last 4 rounds of chemo were FEC and herceptin. Twice since starting that in December I had my period. I don't find that normal...did anyone else get their period back during chemo?? I'm 38 so not young but not menopausal either.
0 -
Foreverchanged72612 some women do get their periods back or they don't stop. The younger you are the more likely. 38 is young. My PS did not want me lifting my arms above my shoulders till my drains were out. In my case that was 1 week but many women go longer. It still took a while for me to get my range back but others got theirs back much quicker. I did have to go to PT. I almost have it all back but I never got to 100% on my left. Most of the women I know did get it all back.
I didn't have radiation but I know at my treatment center they don't start hormone therapy till after rads. Some places might start it at the same time… you really need to talk to your MO and have plenty of time to do that.
0 -
Foreverchged--Everone is different so u'll just have to see--like Lago said wen u have u'r drains in movement is pretty limited , mine were in for almost 3 months so it was just a longer time and I too don't have 100% back even now on one side more than another. But being younger u will probably heal quicker so I don't know if there is a normal it just does what it wants ro each of us. My sister has a little better reach than I do but not completely and my cousin has about the same reach I do. So it's kind of personal I guess. Don't worry about it it will come back.
0 -
Forever, the first month was the hardest for me. After some PT I got all my range of motion back and most of my strength. There are still some things I cannot do very well, like pushups, but I think it may have more to do with the implants being under the muscle than the BMX. Come to think of it, I never was good at pushups even before BC!
It does take time, be patient, you will get there!
0 -
Quick Update: The Vegan protein powder I linked above come today. I'm not a big fan of flavored protein. I like it plain, but this is vanilla because I didn't pay close enough attention when I ordered. Even so, I mixed it with water to get the "real" taste...and OMg, it's NOT bad....not like vanilla whey protein which tastes like the after taste of puke imo.
15gms protein, RAW, no gluten or sugar, blah blah. 70-80 calories! WOOT...that's better than fage!
So. No more whey for me. A 2 lb bag is about $40...about 47 servings.
AWESOME SAUCE!
0 -
Hooray! Tomorrow marks 2 years since my breast surgery!
0 -
TonLee: That sounds 'great'. I think! I'm working with a Fitness Trainer now at my gym and she's kicking my butt....I was really naueaus yesterday and she said I probably needed more carbs because lack of carbs causes your sugar to drop. Guess I'll need to increase my carbs when doing these workouts.
0 -
Bren my PS told me no push ups or any exercises that specifically target the pecs now that I have implants. It would feel strange anyway.
Tonlee I was just told by a friend of mine that if you do strength training your muscles retain more water. I do notice a lot more weight. Is some of that from water?
ArleneA so tomorrow is your 2 year NED date? Yay!
0 -
Hi everyone, glad to have found this group. Look forward to reading prior entries. I had DCIS in 2008 (ER+/PR+/HER2-) treated with lumpectomy/re-excision, radiation and Tamoxifen. Mammogram last summer was clear, manual exam by oncologist in September was clear, then end of January discovered 2 large lumps in opposite breast. Mammogram and ultrasound were "worrisome" and indicated lymph involvement (1-3). Lumps and lymph node under arm biopsied and all returned positive. Now diagnosed with Stage IIIa triple positive. Insurance wouldn't approve PET scan (gotta love them - not) but contrast GI and bone scans showed no metastis (possible 5-6 node involvement). Due to tumor size/aggression and lymph involvement chemo was preferred as 1st step of treatment followed by surgery (I requested double mastectomy and they will additionally do axillary node dissection), radiation, and reconstruction if I choose. I started TCH treatment last week. Hit me a lot harder than I expected but I do know lots of cancer survivors, even Stage 4 for many years, so I am trying not to let prognosis or treatment effects get me down. I am a single mom with both kids away at college. It's a little intimidating to go through this "alone" but I did last time as well and my friends, survivor group I got to know after prior diagnosis, and church (as well as old friends) are making sure I don't feel alone - I am so blessed. God bless all of you fighting this battle, as well
0
