All Topics → Forum: HER2/neu Positive Breast Cancer → Topic: TRIPLE POSITIVE GROUP
Posted on: Jan 31, 2011 07:30 AM, edited Dec 10, 2012 08:55 AM by TonLee
TonLee wrote:
This is primarily for people who find themselves with THREE +'s by their diagnosis.
If you are new to breast cancer, please click on the link below and read. It is "What I Wish I Knew At the Beginning of Treatment."
community.breastcancer.org/for...
Posts 7921 - 7950 (17,647 total)
Jul 18, 2012 10:20 AM ArleneA wrote:
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.
Jul 18, 2012 10:23 AM lago wrote:
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.
Jul 18, 2012 11:08 AM TonLee wrote:
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.
Jul 18, 2012 11:08 AM TonLee wrote:
Go Lago, get your groove on! lol
Jul 18, 2012 11:17 AM ArleneA wrote:
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.
Jul 18, 2012 11:21 AM TonLee wrote:
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.
Jul 18, 2012 12:15 PM ArleneA wrote:
TonLee: So glad you are doing well. It is interesting how doctors see things so differently!
Jul 18, 2012 02:53 PM kltb04 wrote:
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.Jul 18, 2012 02:56 PM vballmom wrote:
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.
Jul 18, 2012 03:02 PM kltb04 wrote:
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.
Jul 18, 2012 03:58 PM moni731 wrote:
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.
Jul 18, 2012 08:30 PM TonLee wrote:
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.
Jul 18, 2012 09:25 PM Moonflwr912 wrote:
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
Jul 18, 2012 09:28 PM Moonflwr912 wrote:
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
Jul 18, 2012 09:41 PM ArleneA wrote:
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
Jul 18, 2012 10:03 PM kltb04 wrote:
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.
Jul 18, 2012 10:21 PM ArleneA wrote:
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
Jul 18, 2012 11:16 PM moni731 wrote:
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!
Jul 19, 2012 02:14 AM Hindsfeet wrote:
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.
Jul 19, 2012 07:18 AM slousha wrote:
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
Jul 19, 2012 07:25 AM vballmom wrote:
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?
Jul 19, 2012 07:33 AM slousha wrote:
Hi, wballmom,
of course, you should, you must do everything to keep your heart ok!
Best Usha
Jul 19, 2012 10:06 AM TonLee wrote:
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
Jul 19, 2012 10:07 AM TonLee wrote:
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.
Jul 19, 2012 10:35 AM, edited Jul 19, 2012 10:35 AM by Omaz
TonLee - that's fast. Was that an every 3 weeks dose?Jul 19, 2012 11:26 AM dancetrancer wrote:
vballmom, yes, you can strengthen your heart with exercise. The way it works with exercise/athletes is that over time, the heart muscle gets stronger, and can pump out more blood with each contraction compared to someone who doesn't exercise. This is why athletes have a lower resting heart rate. Their heart does not have to beat as fast to pump the same amount of blood to the body.
Now, if you have low hemoglobin, you proceed with caution so that you don't tax the heart too hard - b/c it will already be beating faster to get more oxygen to the rest of the body. You walk a fine line between overdoing it and helping it, IMO. I'm going to wear a heart rate monitor when I am restarting more aggressive exercise to be sure I don't put too much strain on my heart. Regular aerobic training recommendations are 60 to 85% of your max heart rate (look for forumulas on line - I use the Karvonan method which is felt to be the "gold standard"). I'm going to stick with no more than 50 to 70% for a while (120 to 142 bpm for me, based on my age and resting heart rate). Also, you have to be sure to slowly warm up the heart and cool it down, too - that places less stress on it as well. My doc said stay at around 40 to 50% of target heart rate when starting out, so I'll be really trying to restrain myself to do that...50 to 70% will be hard enough - heart rate jumps up quickly since my hemoglobin is still low (but now up to 10.2...woo-hoo!)
BTW, if you monitor your resting heart rate (take it laying in bed as soon as you awaken for a full minute, before getting up), you should see it get slower as your overall aerobic fitness improves.
TonLee - your advice is why I am doing the weekly infusions over an hour each time. Probably overkill, but for now, it makes me feel better. My EF when I started was 65%. 3 month post chemo echo was 60%. Doc says that's great...of course it's still normal...but I'm keeping my eye on it!
Jul 19, 2012 11:55 AM TonLee wrote:
Dance,
I don't disagree that exercise can strenthen the heart. But for those of us who were already athletic with a resting heart rate of 50-55, and damage at the celluar level...exercise doesn't do much..does that make sense? In fact, my cardiologist said the harder I "push" the bigger my heart will become to compensate for not being able to pump out the blood fast enough. An enlarged heart is not a good thing. So I guess this might fall into the catefory of exceptions.
Omaz.
Yes it was the every 3 week infusion that went 25 minutes. Honestly it was more like 23. I timed it every time. The chemo nurses didn't like me much (old school shut up and do as your told), so pushed me in and out. I am certain that has at least a little to do with the heart damage. My cousin gets herceptin over 90 minutes. And while there was a little drop in EF, she's steady now.
Oh well. Live and learn.
Jul 19, 2012 12:20 PM dancetrancer wrote:
TonLee, I don't disagree with you at all. I was responding to vballmom's question about those who don't have heart damage. If you have heart damage, you definitely should be talking to a cardiac specialist and shouldn't be pushing really hard. Cardiac rehab can definitely be beneficial, but it is done under a doctor's guidance, as it should be. Once you have heart failure, the story changes, unfortunately. The heart hypertrophies to compensate for the damage, and not in a good way. 
Even for those without cardiac damage, if you've been through chemo, haven't exercised regularly, are older, etc., you should always have a talk with your doctor about what level of exercise is safe for you. We are all different and have different levels of fitness, heart history, etc. I just wanted to share the general principles of how exercise can improve heart health in the average person. Each person will have to ask their doc what is safe for them.
Jul 19, 2012 12:28 PM dancetrancer wrote:
P.S. Also tonlee, your story about pushing too hard possibly being an issue for your heart also has helped me be careful not to overdo it and "push through". I thank you so much for sharing your experience here.
Jul 19, 2012 01:56 PM kltb04 wrote:
What about the anemia/exercise - my counts are anywhere between 9.5 and 10 most times and my MO doesn't seem to be that concerned (bear in mind I am in active treatment)...I am REALLY inactive right now because I am so tired all the time. Would minimal exercise (like walking) be ok? I guess I should just ask her next week when I go in for TX....