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  • dancetrancer
    dancetrancer Member Posts: 2,461

    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!  

  • TonLee
    TonLee Member Posts: 1,589

    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.

  • dancetrancer
    dancetrancer Member Posts: 2,461

    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. Frown

    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. 

  • dancetrancer
    dancetrancer Member Posts: 2,461

    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.  

  • kltb04
    kltb04 Member Posts: 234

    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....

  • dancetrancer
    dancetrancer Member Posts: 2,461

    kltb - ask your onc to be sure, since everyone's medical history is different.  Guidelines I personally follow are only light exercise when my hemoglobin was between 8 and 10.  I walked at that level during chemo (if I felt up to it), but stopped if I got real short of breath.  Some days I felt much worse than others - I suspect those were days my levels were lower.

    Even if above 10 (which I just achieved, yay!), I am not going crazy with aggressive exercise - going back gradually.  I'm afraid of overtaxing my heart when hemoglobin is low, AND I'm on Herceptin.  Will get more aggressive as my count rise further and my body tells me it is ready.  I'm steadily tolerating more and more every week.  5 wks PFC as of yesterday.  

  • kltb04
    kltb04 Member Posts: 234
    Thanks dance -  I have a whole list of questions to ask her this time around.   Anemia, exercise, rads, the haunting calcium level from last time that was redone but I haven't stopped thinking about.Undecided  Just two TX left...
  • TonLee
    TonLee Member Posts: 1,589

    No worries Dance, I was just trying to clarify what I've learned...lol 

    KTLB, there is research out of Harvard on exercise during chemo, can't remember the name of the book, but you can likely google it.  Fitness during chemo is slowly becoming standard practice.

    It essentially states this:  whatever your workout PRE chemo, cut in half.  So if you walk/run for an hour most days, start with 30 minutes, then build back up.  By the time you finish chemo you don't have much to do ....Lance Armstrong was part of this study.  He trained the entire time he was in chemo.

    Walking is a great exercise and doesn't get its fair share of props. 

    I can tell you this....when I felt tired or crabby, I'd jump into a workout and then have enough energy to get me through the rest of the day....exercise always made me feel better, and SLEEP better.

    But Dance gives good advice...make sure your Onc okays it.  And good luck!

  • shore1
    shore1 Member Posts: 591

    Is there a standard time period for each every 3 week herceptin infusion? I get mine in 30 minutes. I get headaches afterwards, and while I don't have ejection fraction issues yet, im curious if stretching it to an hour might help.

  • ashla
    ashla Member Posts: 1,566

    Shore...

    My first Herceptin infusion was done in in hour and a half. After that, it's been one hour.

  • kltb04
    kltb04 Member Posts: 234

    shore - my first Herceptin was an hour and now is 30 min.

    Tonlee - thanks - so half of nothing (which is what I was doing before chemo) is...Tongue out  I just thought it would be good to start trying to do something before surgery (which will likely be mid-September). 

  • omaz
    omaz Member Posts: 4,218
    shore - I was having some problems with the infusions - not feeling well afterward and things and my onc suggested slowing the infusion to 2 hours and that really helped me out.
  • lago
    lago Member Posts: 11,653

    My herceptin was 30 minutes. At my first chemo I don't remember how fast things went. They started slowly but as they noticed I wasn't having issues they sped things up.

    Never did get another MUGA after the 1st one before chemo. 

  • Hindsfeet
    Hindsfeet Member Posts: 675

    My first infusion took about 5 hours. I got there in the morning and left late afternoon. They gave me 30 minute breaks. The first initial infusion my blood pressure went way up. I was given the full range of pre-meds. The second infusion, I didn't say anything thinking they knew what they were doing. It was all done in 30 minutes. I was surprised. Later, I felt as if I was having a heart attack. I notified my oncologist and she had a echo done which showed a 15% drop. I had one infusion then asked for a 6 week break due to reconstruction surgery. I read on Tonlee's heart attack thread how some of you asked for weekly and longer infusions. I asked for the weekly and slower low dose infusions, hoping it would stop the strong palpitations and bring up my EF. My infusions were 69 to 90 minutes each week, low dose, my EF continued to worsen.

    My chest is tight, I'm dizzy, and sometimes breathless. Last weekend, I could barely stand up. I felt like passing out. The idea of exercise or doing chores is almost impossible. I am doing laundry today, and take 10 minute beaks.

    My cardio doctor wants me to stop Herceptin. He prescribed heart meds. I'm not happy about heart meds. Right now, I just want my heart and energy back.  I have another echo the 30th of this month.

  • TonLee
    TonLee Member Posts: 1,589

    Eve,

    That stinks.  I hope you get some satisfaction at some point.  How frustrating.

    KLT, hahaha...yeah half of nothing is nothing!  Seriously tho, I know women who started working out during chemo and have kept at it afterward (sedentary before chemo).

    I'm on my second day of inactivity and about ready to die of boredom.  But DANG my boob hurts....walking jars it and makes  it throb. 

  • chachamom
    chachamom Member Posts: 410

    Tonya: I'm so glad your exchange went well!! I know it will be hard for you to reduce your exercise regimine while you recover....but I know also that you are wise enough to listen to your body along with the doctors to ensure your recovery is successful.



    Lago: FYI on my nail lifting, my PCP doesn't think I have a fungal infection (yeah!), although he took a sample and is giving me a topical cream to apply to cover those bases...and suggests a nail hardener along with the Biotin I'm already taking. The lifting is UGLY!!! But, he attributes it to the tamoxifen.....sigh

  • bcbarbie10
    bcbarbie10 Member Posts: 148

    I did some lightweight strength training 3 days ago, 1/4 intensity of what im used to, then ran 3.5 kms the following day. Yesterday i noted some pitting edema on my mastectomy site and a bit on the armpit. Today i want to do some weights again but afraid this will worsen the situation. I already put on a compression top but still thinking about it. With what you ladies gave been talking about not letting it go during chemo, i am so motivated but apprehensive. Anyway, im about ready to put on my socks and crosstrainers, so wish me luck!



    Btw, i just took two weeks off from exercise before this week as i had my port inserted. But before the port, i felt i was even ready to resume P90X!

  • fluffqueen01
    fluffqueen01 Member Posts: 1,797

    Interesting thought about 30 minute herceptin infusion versus longer affecting heart. After I finished my weekly taxol/herceptin, and then started on herceptin every three weeks, I received it over 30 minutes. I felt really awful, worse than when I had the chemo combo going...queasy, exhausted, etc. Then my third echo scanned at 50% down from 60 (started at 65%). When I told him I felt worse than before and could I lengthen my infusion (after reading about it here), he said absolutely. I could even get it weekly again or every two weeks.

    That made a huge difference in how I felt. I still was tired for a day, but everything else was much better. My EF came back up to 60 also.

    I received some literature from Genentech when finishing Herceptin that said hearts should be monitored for two years after H completion. I had my last one in March after my last herceptin. Onc is doing another in September at 6 month exam.

    I worked out during chemo. I always worked out the day of chemo and the day after as I was on a steroid high. AFter that, I went by how I felt. It was definately a lighter workout, and there was one time, when, in the middle of working out, I suddenly was terribly hot and nauseated. Husband and daughter were there, so I just went to the car, took a nausea pill, turned the ac on full force and dozed. Not sure what caused it, and it never happened again. I felt better after about an hour.

    I am EXHAUSTED! Son had his ACl repair surgery on Monday. It is a bilateral repair where they use a piece of knee tendon from one knee to repair the torn knee. He spent the night and they asked for a caregiver to stay, so I did. They were literally doing physical therapy five minutes after he got back in the room, and then two more times over the next 6 hours. So...no sleep in that dinky "fold into a bed" vinyl chair they have. And then they get you up at 6 to ship you out.

    AND...the therapy is exhausting....for me, lol. Have to lift some machine that moves his knee continuously and it is heavy, and then another machine, called the shuttle for his good leg. And then constantly hauling the ice in and out of the freezer to load the cryo machine. He is doing great, although he has no tolerance for any of this. He has to stay flat on his back, and I mean flat. Can only get up to go to the bathroom and take a two minute shower, and has to keep his head lower than his knee. Supposed to help reduce swelling. My arms are tired. This is a definate arm workout.

    Special K...how are things going with the trial?

  • omaz
    omaz Member Posts: 4,218
    bcbarbie - I developed cording and LE during rads.  The therapist had me stop free weights for a bit and then I had to start back slowly at 1 pound.  Can you get the pitting edema evaluated?
  • lago
    lago Member Posts: 11,653

    chachamom my nail lifting was  definitely from Taxotere. I know one of my nail beds on my large toes is ruined so it will never go flat. The other is just still lifted. Fingers got better on the Urea but still not all the way down yet. I think the issue is the nail texture is so much harder (not in a good way) and thicker than before. The Urea softens it a bit. I saw a dermo for this issue. If your PCP can't help you then think of going to a derm that is familiar with this. Maybe your onc can recommend.

    TonLee the issue I had with surgeries is recovery and not being able to exercise. Having LE each time I had to stop, I had to work up gradually again. It's a PITA for sure but you'll be back. Remember that cancer treatment is a time suck, or should a say a temporary life suck! At least exchange isn't as long as recovery as the BMX/MX.

    bcbarbie I too would get evaluated. My LE started after my 4th tx. If there is pitting that means it can still go down. I have some thickness in my arm (not visible noticeable to most) that seems to never go away. It's not pitting anymore.My LE  MD says it might go away but it's been over a year.

  • Deedra1
    Deedra1 Member Posts: 1
    There is a current clinical trial for herceptin only NCT00796978, primary investigator is cynthia.owusu@uhhospitals.org, 216-983-3288. However, this trial is for women over 60 only who have to fall within the trial parameters.  Other trials can be researched on clinicaltrials.gov. I highly recommend clinical trials, because it is the only way we'll ever find out if certain drugs will work. However, all the trials use different dosages and different drugs, so cross comparison is vexing to the medical folks.  I was diagnosed at age 62, and am also a 30 year survivor of breast cancer. The cancer I have now is HER2+ stage IIb, ER+ cancer in 2 lymph nodes, and I won't add all the other diagnoses information at this time.  When I had cancer 30 years ago, it was not the same type that I have now. I refused chemotherapy and radiation 30 years ago and it never recurred. (I'm a risk taker.) The cancer I have now is a different type, much more aggressive, but I still refused cytotoxic chemo after mastectomy.  I then refused chemo and joined the herceptin trial. I had almost no side effects from the herceptin, other than fatigue, runny nose, absolutely zero heart problems.  It was a breeze. I will have to stay on Arimidex (an aromatase inhibitor) for 5 years, which I think is extremely critical, is in pill form and costs about $10 per month. For women who are pre-menopausal, tamoxifen is recommended. My doctors (in several states, and who have been involved with Dr. Slamon and herceptin and are definitely as high caliber as he is) believe that I won't likely ever have to worry about this cancer again, after treatment with mastectomy, herceptin only, and Arimidex tablets. I might be a risk taker, but I have researched top doctors and obtained several opinions, as I did 30 years ago.  In all, over thirty years, I have sought 8 opinions from 8 different doctors and do not regret it. One doctor (I gently fired her) stated that she will use the currently published chart for treatment and does not keep up with clinical trials and said no one on the planet would give me herceptin alone, so be sure not to believe everything you hear, or to stick with one opinion. I am not recommending that everyone skip cytotoxic chemo and do herceptin. I am recommending more than one opinion, or several.  All cancers and people are different and respond differently to treatments, and we are in the dark ages as far as progressing toward a cure, but what we have is the best for now. I suggest several opinions, make your decision, and then don't look back. A lot will be factored into your decision - age, whether you have children to raise, your tolerance for risk, your tolerance for toxic drugs, and your fear factor. I have had 30 years of a zero side effects free life because I refused chemo, but then again, I could have ended up with three months.  Take your best shot at a decision, don't look back, and try to enjoy each day to its fullest. I will be 64 shortly, two years have passed and NED. The new targeted therapy drugs are something you should look into. T-DM-1 should be out next year; it combines herceptin with a cytotoxic chemo that targets only the cancer cells and the side effects are generally (depends on the person) not much more than a little nausea. The toxicity to healthy cells is gone in T-DM-1, a huge advance in cancer treatment. Don't give up, better drugs are on the horizon, so when someone says you should do cytotoxic chemo and herceptin, please ask for all your options and the latest drugs. Best of luck to all of you!
  • arlenea
    arlenea Member Posts: 1,150

    Deedra:  I've been reading about the new TDM1 treatment which sounds so encouraging.  Thanks for posting this.  Many times, I questioned my decision to do the chemo but since I was HER-2+, that clenched it for me.  In retrospect, a good decision since I wasn't able to finish my Herceptin due to the EF issues.

    Curious if those with the nail problems did the icing during taxotere?  I did the icing and wonder if it made a difference.  I didn't loose my nails and had no problems during treatments; however, just a few months ago (and I finished chemo June 2011) they started peeling terribly which I attributed to the Herceptin but my doctor says it is residual from the Taxotere.  Just the last week or so, they have begun returning to normal.  :)

    When I saw my onco Monday, I asked her about scuba diving and LE and she said NO problem but still to make sure I use the sleeve when flying.  I told her that I was aware that LE is a risk for your life after chemo and she said, while that is true, after around 2 years if you haven't developed it, that your chances of getting it are slim.  Hope that is true!

    Happy Friday everyone!

  • eileenohio
    eileenohio Member Posts: 268

    Deedra-  Dr Owuso is my MO.   I asked her about herceptin only before I started chemo.  I am 73 yrs old-Dr Owuso wanted me to have chemo,radiation & herceptin. My sisters and I absolutely love her therefore I went with her recommended treatment. I first saw her in February so maybe this trial is new?  I have read that Herceptin only is in the near future.. Dr O is fantastic!!!!              

  • lago
    lago Member Posts: 11,653

    I did icing on my fingers once they started to hurt but as you know no luck. All my nails (including toenails) were effected. It got worse after I stopped chemo. I actually think my toenails (excluding the big ones) look better than my fingernails. I didn't lose any fingernails but lost several toenails… after chemo ended. It takes a while for this crap to get out of our system.

  • chachamom
    chachamom Member Posts: 410

    Hi Lago: thanks for your response....my nails are actually going paper thin on the Tamoxifen.....then where the nail is lifting breaking off like a cracker. They are short. I'll ask my Onc about it when I see her.



    I have my 2nd surgical consult on the 26th for the DIEP. Fingers crossed that I can have it done in September.



    One good thing with my visit to the PHCP for my nails....I told him I was concerned about being susceptible to a recurrence of shingles (had them 3 years ago brought on by the stress of a kidney stone). He didn't hesitate to give me the vaccine, that day! YEAH!!!! I didn't think kaiser would authorize it until I turned 60, but asking got me it. One less thing to worry about!

  • lago
    lago Member Posts: 11,653

    Chachamom only one toenail peeled. Sounds like your nails will recover

  • bcbarbie10
    bcbarbie10 Member Posts: 148

    Thank you Omaz and lago for the advise. I will make an appointment to see my SO on monday. Im just scared he might tell me i couldnt use the port for my tuesday and wednesday sessions :(((

  • lago
    lago Member Posts: 11,653
    BbBarbie using your port is the best thing you can do. A tourniquet and sticks are not good for LE. That's why I'm torn about getting my port out. LE on one arm other at risk. I don't see this as an issue for getting tx.
  • omaz
    omaz Member Posts: 4,218
    bcbarbie - Is the swelling near your port?  How long have you had the port?  Do you have any redness or warmth to the area?  No fever right?
  • moonflwr912
    moonflwr912 Member Posts: 5,938

    Just read a news release about big babies and BC having a correlation. Well, three of my four were over 9 lbs, one was 10 lbs 4 ounces and no, I didn't have gestational diabetes. but then again, there is so much of this type of info out there who knows. Just thought it might be interesting to get anecdotal info, so, who had big babies? For the study, they said over 8lbs 5ounces is a big baby.