TRIPLE POSITIVE GROUP
Comments
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TonLee - glad it went well for you. Try to take it easy
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Way to go TonLee....another step forward on the road to surivorship. Let's all just keep on keepin on forward!
Question ....I think I should be finally getting my hormone meds in the near future. I know most of you started right after surgery in most cases. I'm post everything except Herceptin and have been post rads for a month.
I got my first bone density test and have osteopenia in two areas but my hips are normal. is osteopenia alone a contraindication for AI's? I've been reading alot about osteopenia and it's really normal at my age and does not need treatment...just monitoring. From what I understand my normal hips are actually abnormal. I'm 63!0 -
I was diagnosed with slight osteopenia after surgery but before any other treatment. My onc put me on calcium (already working out). Went through chemo, chemopause and 5 months of ESD (anastrozole). I only lost .1% density (yes there is a decimal point there). My mom had osteoporosis, I'm small framed, Caucasian, used to smoke, used to drink lots of diet soda etc. As you can see my bones seem to be holding up. I go for another bone density in a few months. I'm currently 51.
Also it does appear that us small boned gals may be tested as having osteopenia when we really don't. The equipment might not be able to get a correct reading on smaller bones.
Be sure they continue to test but osteopenia is not osteoporosis. My onc and PCP doesn't treat osteopenia.
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Lago you still taking? Anyone else taking Anastrozole? Just got it filled but have not taken yet. Don't want more SE.
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Morning:
I just got my results from my DEXA which still shows osteopenia and NO change in the stats since diagnosed years ago. The oncs all seem to want me on Boniva. I'm checking with my primary care doctor who actually ordered the test and would like me off the Boniva.
I asked about the dlzziness and nausea and onc said it wasn't from the Arimidex and if it was, it would have shown itself in the beginning (as you said Lago) and she asked if I started taking anything new (again you mentioned that Lago) which I have not. She said I probably just picked up a little bug. She said if it continues to come see her.
Now for more good news, my EF is back at 65%!!!! Hooray, it is returning to normal (started at 73). Still not returning to Herceptin but onco is good with the 10 treatments I had.
So now to schedule my deporting!
I continue to see the onc every 3 months for follow-ups for a year and then every 6 months. Now, I'll alternate between her and the PA. Mammo/ultrasound now only once a year!
Arlene
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MsBelle: My only SEs from the Arimidex are the stiff joints when you sit but it goes away quickly when you get up and move around. My knuckles hurt slightly too. Definitely doable after all we've been through.
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Msbelle Yes I started taking them March 1st 2010. 16.5 months. First 3 months I had no SE. Now I would say I get a little stiff when not moving but not too bad. I mean I do work out. I do have trigger finger in my middle left finger but only when I first wake up. Gone in about 5 minutes. I might get some warm flashes when eating spicy foods but I'm not sure they are pretty subtle. I did get warm flashes during chemo but I could tell they were flashes. These not so sure if I'm just hot form the food.
I was more scared of the AI than chemo. OMG 5 years! You read so many women here having issues. But remember many of us don't or have minor ones that are so doable. I eventually figured I won't know if I don't try. I can always quit.
OK I just finished my strength training (at home with weights) now off to the gym for some aerobic. To hot to power walk outside.
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Arlene AWESOME news!! I am SO HAPPY FOR YOU!!
On a side note: Women who are POST menopause can use Tamoxifen in place of an AI. That's what I'm doing. Tamoxifen builds bones.....so my onc said we'll switch back and forth, one year bone building, the next an AI that eats up the bones. He hopes to mitigate any bone loss.
If I do this for 5 years it will give me 2 Tamox and 3 AI...which the literature supports as being optimal for my case.
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Go Lago, get your groove on! lol
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How are you TonLee? How'd the surgery go? Feeling good we hope.
Thanks for the information on the Al/Tamoxifen. I'll check with my doctor.
I'm hoping they will take me off of the Boniva? That's the one I hate.
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Arlene I feel fine....just a little sore.
When I started back on Tamoxifen, my onc said women who are borderline bone density, or lower, really benefit from 2 years of a bone building drug like Tamox.
And since I had the same symptoms with the AI (only 100 times worse) I went back on Tamox.
I know nothing outside of Sally Fields about Boniva...lol....seems to me if you can get the same benefit from Tamox (and I don't know,that is a question for your onc) then that is one less pill and SEs you have to deal with.
Please keep us posted. I find the different answers from different Oncs to be very enlightening.
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TonLee: So glad you are doing well. It is interesting how doctors see things so differently!
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TonLee - glad everything went well! BTW "I Didn't Throw Up and I'm Still a Little High" sounds like the perfect title for a surgery chapter in lago's book
. Not throwing up is quite the accomplishment - before my dx, I had only had one surgery (for wisdom teeth) and I puked all over the place after I woke up so I always tell the anesthesiologist about my nausea issues before surgery. 0 -
Does anyone know if there are things we can do to build our EF? My baseline was 60% which I know is in the normal range, but seems so low. I have low blood pressure and I am not in great shape. I need to lose 20 pounds and have not been exercising. I've started walking now that AC is done. It was brutal on me.
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I would like to know that too vballmom - I think mine was in the mid 60s before I started TX. That seemed low to me too.
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Hello all! EF is just a measurement of how effeciently your heart is emptying, (usually) the left ventricle with a contraction. Systolically.
Normal is usually 55-70, although some measure as low as 50 being normal. Overall, cardiac function may be improved with cardio- workouts. Obviously the better shape you are in (healthy heart) the better your EF. Obviously, you should always clear any exercise plan with your physician first. Diet also plays a big role, i.e. heart healthy foods. Hypertension, heart attacks, diabetes and drugs can lower EF through heart muscle damage. So all the stuff that is preached to us- diet, exercise, non-sedentary lifestyle, etc- will help your heart health.
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Moni,
While I agree cardio and healthy eating are essential for longevity...they in no way improve EF. If they did, I would NEVER have had a problem with it. I am probably in the top 5% on this board who is fit. I'm extremly fit, and yet have a low EF.
When damage is done from chemo at the muscular cell level, only time can heal it. My cardiologist said many women (no matter how fit, like me, and how well they eat, and the supplements I take) ever get it back...it's damaged muscle.
The good news is, most women get it back regardless of how active they are, or what they eat.
But the rest of us just have to learn to live with it. My EF is 49, down from 75. I still workout 6 days a week hard, but that's not helping my heart heal. If it was, I'd be healed already.
Diet and exercise are important factors in many areas, but as far as repairing damage caused from chemo toxicity, not so much.
This is all via my cardiologist and onc, as well as what I've researched. There is no way to determine WHO might have heart problems from the meds. And I've tried hawthorne, CoQ10, and other supplements. As well as ace inhibitors and doing it all for over a year, and still no improvement.
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Well, I started this journey with an EF of 59% and a pacemaker, because my heart rate would drop as low as 30!. My last MUGA I was down to 57 . Still have Herception til February. We shall see. I obviously have been used to that level of heart rate so I don't know what a heart that wasnormal and EF of 75% would be like. It is what it is and I have to deal with it. Of course, if you add it to anemia, I guess it explains my energy level as being , um, low! LOL
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Well, I started this journey with an EF of 59% and a pacemaker, because my heart rate would drop as low as 30!. My last MUGA I was down to 57 . Still have Herception til February. We shall see. I obviously have been used to that level of heart rate so I don't know what a heart that wasnormal and EF of 75% would be like. It is what it is and I have to deal with it. Of course, if you add it to anemia, I guess it explains my energy level as being , um, low! LOL
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Me too TonLee: Before this 'journey", I ran 35-50 miles a week and quite a few half marathons each year. When I started, my EF was 73.6 which dumb me thought was low - what did I know. My onc said 73 was really high and most started in the 50's. When I moved back to Florida and had another MUGA at a new facility and they thought I was just starting Chemo and my EF was down to 50 and the radiologist indicated that this must have been a baseline before treatment and that the 50 was fine. Guess I'm one of the lucky ones that it is recovering. I do eat right and try to do all the things right for the body and trying my darndest to get back to running but that isn't so easy.....I am working out and doing walk/jogs but nothing like before.
We are all so different and, as we all know, get such different stories from our doctors.
Best to everyone! Arlene
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I only just started Herceptin so I don't know if and how it will affect me( I also had A/C and I know the A can affect your heart too). At what point did you all have further tests to see what your EF was? After Herceptin? During? Oh and I looked mine up and it was 61 so lower than I thought.
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Hi kltb04:
Most of us had our EF's checked (many of us with a MUGA) prior to starting Herceptin and then my onc suggested them every 3 months...it is still very rare to have heart problems from Herceptin so the odds are in your favor.
The good thing is that the majority of the time, it does return to normal.
Arlene
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Hi TonLee hope you are continuing to heal well and back to your work out soon!
Yep, I did say that the EF would decrease with 'hypertension, diabetes, heart attacks and drugs' (and you can include pregnancy and obesity in there) all causing cellular damage, thereby decreasing the EF. And yes, it may or may not recover. That you started so high, obviously your heart was very healthy. And unfortunately, one cannot just over night fix prior heart function. I, along with a lot of people, wish! But having your heart work more efficiently is possible for most people. but it may take some time.
A MUGA also only measures the heart EF at rest during the systolic phase. It is possible to measure CF during the diastolic phase and during exertion to get a more accurate picture of complete cardiac function.
According to the Gententech web site, cardiac damage (both temp. and permanent) are not that unusual. Fortunately, most recover. My onc only did a re-screening 8 mo after Herceptin and because I had complaints. At that time I was at 55 down from 65. But I could definitely feel it!
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Everyone said that Herceptin was going to be basically a cake walk. No one should tell you this. They don't know if you will be one to end up with a heart problem, and depend on heart meds. Right now, I'm suffering from shortness of breath. It is difficult to do my daily chores. I can't even think about walking around the block. I have to contantly take breaks to catch my breath.
After taking Herceptin, you suspect something is really off tell your oncologist even if it seems minor. I complained, because after the first 2 treatments, I had unusual palpitations, and chest pain. My now cardio doctor said he treats a lot of cancer patients taking herceptin. He just took me off it today. No more Herceptin unless it is necessary for survival. My EF dropped from 65 to 44. I'm fortunate to have caught my EF dropping early, and hopefully my heart will recover. I had about 4 echos since starting Herceptin. I'm scheduled for another one the 30th and another one the end of August. I started Herceptin in February, with a 6 week break after the 2 or 3rd infusion, followed by low dose infusions until the end of June or early July. I skipped a few so I'm not sure how many I had. My cardio doctor said he wants me on heart meds. I think I'll wait and see if my heart recovers. After Herceptin, fosamax and the recent anti virus drug side effects, I am all the more leary of drugs.
Some people can handle drugs easier than others. Just be alert, and trust your instinct.
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Hi ladies,
I have had 17x Herceptin with chemo and rads in 2010. I'm in a study and having controlled LVEF twice a year my state was a little lower in 2010, now 65-69! Don't be too afraid, but take care!Best
Usha
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OK, so cardiac damage can not be necessarily repaired by exercise and healthy eating, but what about for someone like me that does not have damage? Can I strenghten my heart while on Taxol and Herceptin by exercising?
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Hi, wballmom,
of course, you should, you must do everything to keep your heart ok!
Best Usha
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Vball, YES! Try to do as much as possible while on chemo, because when it is over you'll be miles ahead of people who "take it easy."
My Card. told me exercise is what kept my heart strong. I exercised through out chemo...just like normal...no matter how crappy I felt. Once we discovered the low EF I wondered out loud to the Doc. if all the exercise I did during chemo might have caused it.
He said it "may" have caused the heart to enlarge a bit because I was forcing damaged muscle to work...and like all muscles they get bigger the harder you work them. But, with the heart, that's not a good thing.
He also told me that exercising might have saved my life....meaning my heart was strong when this all began. If I wouldn't have been fit, perhaps the Herceptin would have really damaged it.
It's all conjecture of course. He doesn't know for sure, and either do I.
I can tell you this though. Working out during chemo burns serious calories!! lol
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One more thing. I think my damage came from getting my Herceptin infusion in 25 minutes flat. I don't think the heart can take that level of toxicity that fast.
Just my opinion tho.
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TonLee - that's fast. Was that an every 3 weeks dose?0
