Starting Chemo in November 2017
Comments
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Hi Blair. I don't know if exercise prevents recurrence but for overall health it's the best thing around. For me it elevates my mood and just makes me feel better so I happily do it. I'm glad you are tolerating Letrozole well. I know some women have a hard time with it.
I have head gear to donate as well. Recurrence or no I just don't want the reminders around. My hair isn't attractive but I'm grateful to be able to go our without something on my head and pass for normal, especially in summer.
I agree, so much more research is needed. Research has come far but so much farther to go. Cut, poison, burn of today's treatment is tough as we all know too well.
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Exercise is evidence based to show reduction in risk of recurrence/cancer death, & one of the more recent meta analyses published in the Canadian Medical Association Journal said
" Physical activity can reduce breast cancer mortality by about 40% and has the most powerful effect of any lifestyle factor on breast cancer outcomes."
Box 2 has a summary of key findings. Some of the things are lacking strong enough evidence yet but exercise definitely has a lot evidence behind it. http://www.cmaj.ca/content/cmaj/189/7/E268.full.pd...
Furthermore, there was another study which showed that runners did significantly better than walkers in terms of survival. The takeaway from that one is that the more you can manage to add vigorous huffing and puffing exercise the better - don't just rely on moderate activity.
Significantly greater reduction in breast cancer mortality from post-diagnosis running than walking
https://onlinelibrary.wiley.com/doi/full/10.1002/i...
IMO it doesn't need to be running but it has to be vigorous (for example elliptical machine would be lower impact or someone just mentioned on another thread, adding nordic ski poles to walking might bump it up into more vigorous exercise)
We also need resistance training - weights, squats etc, esp if you're on any hormone therapy as those deplete the bones. Building strong muscle which attaches to the big bones is how you keep bones strong.
(I'm a lurker on this thread - I'm in the Feb group and was reading you guys to see what was ahead of me.
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Moth you make some great points. Vigorous and not just moderate exercise sounds key. Did the studies indicate how many minutes per day were needed to be effective? Breaking a sweat might be a good criteria.
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thank you for the tips,guys. I’ve never been athletic/active, but I need to change that.
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The CMAJ study said at least 150 minutes of activity per week.
But the runners vs walkers study talked more about METS which are "metabolic equivalents""When analyzed by categories of running energy expenditure, breast cancer mortality was 87.4% lower for the 1.8–3.6 MET-hours/day category (95% CI: 41.3–98.2% lower, p 5 0.008)
and 95.4% lower for the 3.6 MET-hours/day category (95% CI: 71.9–100% lower, p 5 0.0004) compared to the <1.07 MET-hours/day category"
Dr Susan Love's website (author of the Breast Book) has a great article on her website explaining METS and how to meet the goals. She says 15-20 METS/week but you see above that the greatest benefit was from 3.6 MET/day which is 25.2/week. However, depending on fitness level, that might be something to work up to.
https://www.drsusanloveresearch.org/pdfs/Great_Rea...
But if anyone is confused by all the math & just wants a plan, I'd really recommend paying for a session with a kinesiologist or an exercise physiologist (not just a training person at a gym but someone really qualified), bring them the articles, explain what you're doing now, get a baseline of your fitness level, and get them to design an exercise program that gets you into the target METS/week. It seems to me that it would be money well spent to make sure that you're getting maximum benefit. The potential rewards seem huge.
And let's remember that *most* breast cancer patients actually die of heart disease - and a good exercise plan will help delay that as well!0 -
Kivans, Moth - thanks for the input. I too have heart disease on top of this breast disease, but my problem is this and age. Also I have to be careful of my back still. I’m quite messed up. At 68 (closer to 69 now), I have slowed down. It’s harder to get myself huffing and puffing. Maybe I should say, that’s easy, but I can’t keep huffing and puffing as well as I did in my 50s. My body is tired too from all the stress. I plan to exercise like I had. I’m hoping that heart disease wins over a recurrence in my case. I know that sounds horrible to say, but I don’t want to die of cancer. Having a heart attack seems a much easier way to die. However, there are many other ways I could die.
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Hi, all. I've never been able to get into running or going to the gym, and have always hated getting sweaty.
But I take transit to/from work and am a brisk walker. So I get in about 2-3 miles daily (depending on where I go for lunch.) And have also been faithfully doing my PT exercises each night, which include light weights and resistance bands.
My motivation is both to offset joint pain/bone loss from the Arimidex, and to maintain my ~13 pound weight loss. I've always been a healthy weight, but the scale had crept up a bit over the last few years. I am now actually pretty slim and liking the way I look and feel at this size, so want to stay this way!
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Our vanity sure motivates us to exercise, lol. I exercise because of vanity and also how good it makes me feel.
One caveat though with regard to the study. Like all studies it shows a positive significant statistical relationship, not casualty. It could be that healthy people are more likely to exercise vigorously in the first place making those with high health to begin with less likely to recur. That said I enjoy exercise and being active. I'll continue to do it and yeah I think it does put the odds for future health more in one's favor. For me, finding activities that I enjoy and don't feel entirely like exercise helps: bike riding, walking with friends, dancing. Even making friends at the gym helps. Here's to move it or lose it.
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Gotta add that I've been an exercise freak for decades and was extremely fit when I was diagnosed. I still believe in the benefits of exercise and so I carry on with it.
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i was a non exerciser in my teens and such, but in my 20s a pal invited me to ski, i was hooked! Added camping and hiking and of course later i was hooked on cycling.
Then i found the gym....it is hard now but i still do as much in the gym as i can
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hi everyone? How are you doing?
How are you all managing the hair growth? I started going uncovered a little over a month ago, but now the hair is getting to the length where it’s unruly and growing in awkward directions, and I’m not sure how to tame it. It’s probably 1.5 inches now. Any recommendations
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Star - my hair is getting a bit unruly too. It’s still very curly and that causes it to stick out funny and I’m thinking like you - what do you do with it? I wish I had gotten a bigger shaver that has longer attachments. I’m shaving the bottom lower back a half inch to allow my top hairs to grow out, but I can’t tell if the new hairs are growing straighter or not. I plan to chop off this chia pet stuff eventually. I’m not wearing my wigs as much because it’s hot in FL right now.
I’m attending swim classes 3 times a week. Figure that’s better for my back which still bothers me off and on, but is getting better. I’m buried in huge medical bills that aren’t making me feel very well, but not in debt yet. Medicare hardly pays anything. The charges are so outrageous. I learned yesterday that the hospital surgery bill from last October is still being battled with United Healthcare at a cool $4,100 on my part. I’m practically at my limit on this mess. She said they would have to swallow it - I think and hope. It’s a shame this stuff costs so much.
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Hi Star and Blair. My hair is also unruly but I haven't found the key to taming it. Mine is very dry, especially the part that hung in with the chemo. I keep trimming the old growth out as the new comes in. If you picture Einstein with a bad mullet that's me. I try not to stress over it and just rock what I got. I guess I'm just grateful not to have to wear any head gear, specially with this summer heat. I hope my new hair is healthier and less dry.
Blair I'm so happy to hear your back is getting better! It's great that you are swimming, how perfect for the hot weather. I like to swim.
I hear you on the medical bills.I didn't realize medicare stuck you with so much of the cost. I'm sorry to hear that's the case. I applied for financial help at the two hospitals where I racked up the most bills but they said no because I have equity in my house and own a car. It is so ridiculous what it all costs. My radiologist met with me for 20 mins per week and charged $1,500 each time. So ridiculous. I'm on a payment program with the hospitals. It's discouraging. I cut my expenses where I can and do my best. I think it's a mental challenge to put it into another category of my brain and not let it get to me.
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sorry for all with Bill insures. I have a supplimental plan that so far has been a life saver and paid basically whatever medicare did not. I am actually much better off that when i was working as my company had a stinkoo health plan.
Been fighting with my computer for the last week but think i got it resolved now
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I have Obama/Trump care so not so great even with a "Gold" plan. Expensive premiums, low deductible, but big out of pocket expense, which is really just another deductible. Supplemental plan is the way to go with medicare if you can swing it. Glad you have it Proud.
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Hi, all. Nice to get updates from some of you.
I too am a member of the "unruly hair" club. I cold capped and saved about 50% of the sides and back. But had significant thinning on top and now have about 2-3 inches of frizz sticking up - not a good look. I've had the longer part trimmed to a jaw-length bob but am still wearing a wig until I can get the short bits to blend in better. I'm thinking another month or two, at which point I'll get a real cut and color.
I've had a couple of "bubbles" of what feels like gel/fluid under the skin and over my implants ever since my breast surgery back in October. My surgeon and I both thought it was just the Alloderm which hadn't integrated due to delayed healing as a result of my chemo. But I've been done with chemo now since mid-March and things haven't really improved. So I am going in for an ultrasound on Friday and will see what they find. My physical therapist says as long as there isn't swelling she can try some more aggressive techniques that may help.
Monday is my Herceptin/Perjeta infusion day, followed by my every 3 month echocardiogram. So although the appointments are shorter now, I still feel like there are a lot of them.... Final Herceptin is in November; I look forward to that!
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Hi Magari, Kivans and Proud,
Unfortunately having heart disease and now breast cancer negated my enrollment for a supplemental plan that has a monthly premium. The uunderwriters are strict - at least in FL. (Medicare plans vary by state and counties) I tried to change last year and they told me I couldn't qualify because of my diseases. Doesn’t seem right to me, but I can’t control it. If I could have qualified, I would have capped at $2,600 out of pocket. At least my drugs are covered 100% so far
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blair, sorry you were not able to get a supplimental plan, all this dumb insurance is a total nightmare
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Blair I think it's such b.s. that you were denied a supplemental plan. I've never heard of that happening before, but yes, the plans differ a lot from state to state. There are many good people in health care but what a mess our country has made of health insurance. It is a disgrace.
Magari it sounds like you are hanging in there with your treatment. I hope Herceptin/Perjeta is easier than the CT chemotherapy. I also hope your ultra sound gives you answers and a way forward to feeling better soon. Let us know how it goes.
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My hair is only about 1/4-1/2 inch long, but it is coming in nice and thick, which makes it look longer than it is. On my second break from herceptin/perjeta due to reversible heart damage. Radiation is done - and it was a big nothing. Had a nasty blister under my breast, but the prescription burn cream worked within a week. The breaks in herceptin/perjeta treatments pushes my ending date out to February or March, but that's not a problem. All the hard stuff is done.
Still not able to smell anything. The Ear, Nose & Throat doc put me on a nose spray that "might" help get my sense of smell back. Insurance doesn't cover it, of course, because it isn't manufactured commercially. I have to get it at a compounding pharmacy where they make it special for me. $65 each month. If it doesn't work after 3 months, it isn't going to work. If it does, then I have to use it indefinitely. My oncologist isn't convinced that this was caused by chemo, as I lost my sense of smell 3 months after chemo was over.Neurologist insists it was the chemo. ENT said there is no way of knowing. Brain MRI & EEG were normal. No polyps or obstructions. At this point, it doesn't matter what caused it. I am cautiously optimistic that the spray will help.
I'm lucky I work for a big health care system and have good insurance. I'm sorry some of you are struggling with the costs. It is sooooo expensive to be sick. No one should have to deal with all the stress of paying for health care when battling a serious, and life-threatening illness.
Yay for hair!
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Meowmmy you look radiant! The hair is coming in great and looks very attractive. It doesn't look like you are getting chemo curls. My hair is growing like crazy and has a wild look to it. But I'm not complaining. I agree, yay for hair.
I'm glad the hard stuff is done for you. May you continue to heal and get your sense of smell back. You are right the cause doesn't matter. Overall it looks like you are thriving and that's terrific.
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my, i agree, your hair is adorable. Funny my hair came in straight but now it is back to my old wavey thing, hey it is hair!
Fighting a uti so last night not fun. Got the meds at the urgent care joint so it should be better.......SOON,
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Meow...Your hair looks great. I still look like my grandpa!
Iris...You are so prone to those darn UTI's. Hope the meds help.Hope
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hope, yes I asked urologist once why, she said some folks just do! Big help she was. Trying new trick given by friend, drinking juice glass of cran juice every morn. I like cran juice so not an issue, uti seems to have gone tonight
Since doc lowered my dose 6 pills daily from 8, skin is much much better, course anxious to see my tests the end of month
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Iris...Hope the cranberry juice helps. I think you can buy cranberry capsules, too. I've only had one UTI in my lifetime and I hope I never have another!
Are you getting scans the end of the month? Fingers crossed!!
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hope, i see my mo next week and then we will do pet scan in sept. Eager for that as she has me on 6 pills a day which is down from the 8 pills.
It has been pouring rain here in the east for the last several days, it is sunny today but since i know i have arthritis in my stupid feet, well my feet hurt like big time. I do not think i every did cran pills....then again, i should look in cupboard. Strange things in the backs of my cupboard!
How is your pt going?
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PT is going fine. I have appointments scheduled through the second week in September. I have a feeling I will be having scans soon, too. I never look forward to them, though!
Hope
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well i called my onc to let her know i had major pain in my right back area, like across from my boob. So onc has upped my pet scan to this Monday so she will have the reports by the time i see her on wed. I was able to sleep only after taking some old pain meds, spent the day in my recliner.. Got my pal to go with me, hoping it is a pulled muscle or some thing, dang tumor markers have been improving every month so not sure what to expect
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nonahope - glad pt is going well. best wishes on your upcoming scans!
iris - sorry you've been in pain. praying for good news after your scan.
I'm doing well. Beginning to feel almost normal. My eyebrows have started to thin out again. They grew back 6 weeks after chemo, but I think the shedding process has started again and they're all on the same growth cycle alas. I guess this is just something I'll need to get used to.
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Iris...I'm glad you didn't wait to call your doc. My doctor doesn't do Pet scans. He says tumor markers are not reliable. So, I have nuclear bone scans and CT/with contrast when I have my scans. When I had my horrific back pain, similar to yours, my MBC was discovered on a CT/with contrast. There were mets in my rib area in that location. Further workup of nuclear scan showed the mets elsewhere in my bones and a couple of very tiny nodules in my lungs (too small to biopsy). So, they did a bone biopsy which finalized all the scans as positive for MBC to my bones. I'm hoping yours is just a pulled muscle. My pain was excruciating -- I hope yours is not. Keep us posted.
Star...are you on some kind of medicine that might be causing the shedding?
Hope
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