TRIPLE POSITIVE GROUP
Comments
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Linda (and Lee),
I am also on prilosec, which I started after my first treatment. It really helped to keep my stomach calm. Lee, if you have a sour stomach, you should consider going on it for the course of your treatment. Costco sells their own version OTC of it very reasonably.
I was wondering when I can go off. (I'm almost 3 weeks PFC now.) I'll try stopping it later this week. Thanks!0 -
cgesq - maybe Prilosec would be the answer - although this is primarly below the naval discomfort but there's some upper gas...
I have a box of generic Prilosec in the medicine drawer. I think it expired in 2011. I wonder if it's still okay... Or perhaps I'll make that much dreaded run to Costco that I haven't made since diagnosis! Our Costco list is probably as long as my forearm by now (DH is keeping track of it).
Thanks for that advice.
I had some popcorn last night and I think I'm paying the price today.
And I agree with Camillegal who mentioned that our bodies' little problems seem to be amplified on chemo. If I eat too much hot sauce (pre-chemo - i.e. in "real life") I often get this stomach discomfort so I guess it's not too surprising that it's rearing its (sort of) ugly head right now. Yesterday was pretty good and really, it's not that bad. And it's typically relieved quite a bit by going to the bathroom (sorry if that's TMI!).
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Lee,
I was actually looking for a reason to go to Costco. I keep my health insurance card in the same section of my wallet as my Costco card, and I couldn't stand that my health insurance card was getting more of a workout than my Costco card. lol!!!!!
On the prilosec front, my MO said there was no downside to being on it for the entire duration of my chemo treatment. It definately helped keep my stomach on an even keel.0 -
Lee, I've been eating popcorn like crazy lately. It's been my go-to snack, but thankfully hasn't given me any problems. I've also been eating foods as normal (meaning uncooked items). I hadn't given thought to that, but see why people would limit them.
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cgesq - my MO prescribed the Prilosec so that I ran out of prescription about 3 weeks PFC, he said to go off of it and see how I felt, if I needed more call, so I did and no problems!!!!!
Denielle - my oncologist office has a program where they give discounted rates, and get subsidies from the drug companies to help women stay in treatment. I know one lady who had to pay nothing, she didn't have insurance, did have to receive her treatments at the main cancer center (they have outreach facilities), be she was able to get her infusions free. Talk to the social worker at your cancer center, see what they can do for you.
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I didn't think to get Prilosec as an Rx so my insurance would cover it. That stuff is pricey but it works!
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Lago...thank you for the weather forecast. It started pouring bucked in Indianapolis about 6p.m. Lol
Denielle....check out the herceptin site. They have a foundation that helps with covering herceptin costs as well as copay costs. I found it right before I finished herceptin unfortunately , but made copies for my oncologist to give to people.0 -
Linda and cgesq -
We went to CVS and got the generic Prilosec tonight. I'm going to start taking it in the morning. Thanks again for the tip, ladies!
If it works I'll get more at Costco.
My husband hates going to Costco almost as much as going to Ikea!
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LeeA just an FYI Prilosuc never ever works for me even before diagnosis. If this doesn't work ask your onc for something else. I was on Protonics, then Nexium. I eventually had to take Carafate too. Granted most folks do fine with Prilosuc.
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Quick question....Is there a best time of day to take tamoxifen so as to have the least side effects? I prefer to take my pills either right when I get up, or right before bed. I've heard not to take it before bed (so as to avoid hot flashes at night) but I wasn't sure if it could be take first thing in the morning on an empty stomach.
I started tamoxifen earlier this week, and the first day, got some hot flashes but nothing too terrible (and not since then) and have had some minor leg pains throughout the week. I'm hoping that the side effects don't get stronger.
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cqesq my NP recommended I take my Anastrozole in the morning. I think the reason is so I wouldn't be up at night with hot flashes. I'm not sure if things work the same way with Tamoxifen. Did your onc or NP have any recommendations?
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Lago.
Nope, no suggestions on timing. I figured I would ask the real experts--those who have taken it!!
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I've been on tamoxifen for about a month so not sure how much knowledge i can offer. First 2 weeks I took in the morning but them my MO said she usually suggest at night so I switched. I really can't tell much of a difference, I get major hot flashes either way.
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cgesq, I take Tamoxifen between 4-5 pm every day. It's just an easy time for me to remember, and I feel like I take so many other things first thing in the morning. I have a reminder set on my phone. 2/12/13 will be one year that I've been taking it. The hot flashes have slowed down in frequency and intensity, although I still get several during the day and in the middle of the night. I aso had the leg cramps after a few months of it, but those went away too. My MO said time of the day doesn't matter.
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LeeA, you're taking probiotics, right? Those are essential. Post chemo MO said I should take pepcid for that weird hollowness in my GI area, also I was getting really gassy (tmi? is there any such thing on this thread?) probably from the herceptin. I somehow didn't notice it while I was on chemo but I guess they stuck some antinausea stuff in my IV and I guess the chemo overrode anything from the herceptin. That was pfc so not sure if htat's helpful info....
cgesq, I don't start for a few more weeks but MO said I could take it whatever time of day, could switch around to find what works best for me. Ladies, what am I in for in that regard? Unbelieveably, I'm looking forward to starting the tamox b/c it will mean I'm done with rads. LORD I cannot WAIT to be done with radiation!!!!!!
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I have been taking Tamoxifen 6 months. My instructions say to take with or without a food. I did not want to take it on an empty stomach so I take it in the morning with breakfast. I do not have any hot flashes but I still have that nasty vaginal discharge.
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On the supplement discussion, I have to just say that physicians are not nutritionists and in general they don't understand nutrition. In my medical school (which is the largest private medical institution in the US) we only had a total of 2 weeks worth of lectures on nutrition and that is the standard.
I just don't think of James Watson when I think nutrition ;-) Sorry, had to hop on my soap box. My masters degree is in nutrition and when I was studying, it was a "girls field".
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My onc is female. Not all physcians are male
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My primary care MD,gyn,surgeon and MO are all female.
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CG,
I tried Tamox in the morning, but it made me tired. So I switched to night. When I mentioned joint pain to my Onc, he said to split it up, one in morning, one in evening, and see if that helps.
It did!
And I've noticed my hot flashes aren't as severe now....yesterday I forgot the morning dose, so took it at night with my regular night one...and WHOA...hot flash city all night long...lol
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Anyone know if your supposed to do alot of water drinking with just herceptin like you had to with chemo? It would be kind of to late for me as I only have 3 more to go but I was just curious and kept forgetting to ask my doctor.
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TonLee... Thanks for planting a seed about splitting the Tamoxifen. I am going to ask my MO if that might help with my vaginal discharge. It is not debilitating just very annoying.
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TonLee-- can I do weights to my arms when on the treadmill? after lymph node? I know your really in to the fitness side of things.
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Ang,
I have to give you the obligatory, I am not a Dr, LE specialist, nor do I play one on tv spiel here.
But, you had two SN removed and a lumpectomy. Yes you can do weights, though if you want to work your arms during cardio consider using the cross trainer/elliptical....My cross trainer keeps my arms pretty solid even if I don't do a lot of weights. And it means I can HANG ON! Which means I fall less...lol
I had 4 nodes removed and lift weights just like I did pre-chemo.
Hope that helps
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Thanks TonLee I start tomorrow god am I going to be sore lol.
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ang7894 I am not an LE specialist either but Tonlee will probably support me on this. For those of us that do have LE, exercise is actually a good thing for LE. Weights should be done gradually. I am up to using 7 & 10lb weights. The only reason I don't go higher is my LE arm just can't get stregth beyond that. The 10lb is still a huge challenge. Granted I wasn't above 10lb before surgery
I'm not a body builder like Tonlee.I actually started with 2lb, then 3lb, 3 & 5, 5 & 7, now 7 & 10.
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Lago, I did the same as you. I wanted to be super careful that I did not trigger lymphedema. Started out with no weight at all for certain moves - man my radiation/snb side was weak! Then went to 2#, etc...finally just now up to 10# which is still really challenging. Getting stronger feels great!
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Dancetrancer, I think you hit the important thing, start at one or two pounds and build up very slowly. I also have Lymphedema and am in a study doing weight bearing exercises. They have found that exercise is good, but it is very important to start small and increase slowly. The study coordinator compared it to someone who suffered a heart attack. They'll never get back the part of the heart that died, but they can exercise and improve their heart and even get to the point of running marathons.
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And what I was told about the weights - if you don't exercise with them for even as little as a week, when you restart you need to start a little lighter, and move back up to where you were, don't start right back in at the same weight and pace, with your LE side.
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Jenn,
Thanks for posting that Mayo clinic study about the enzyme that metabolizes tamoxifen. I'm just starting tamoxifen now and I would hate to take it if I won't be able to metabolize it. I asked my MO order that test when they draw blood this week, so that I will know if I should take tamoxifen or go on another drug (or even have an ooph!)
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