TRIPLE POSITIVE GROUP
Comments
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Hello all,
My Taxol/Herceptin treatments finished a couple of weeks ago and the FEC/Herceptin ones started one week after. Ugh. After not having any se's on Taxol this round is hard. Extreme fatigue, metallic taste in mouth and my ears are constantly ringing. I'm trying to drink water but I have to admit I'm not keeping track. I've always been one to putter so I find it baffling when an entire day goes by and I haven't gotten out of bed! I went for a walk yesterday for a half hour and it felt like I had been on an epic journey. Tomorrow will be one week post treatment. Should I be trying harder to get out of bed? Will drinking more water help the ringing in my ears?
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I'm feeling a lot of joint stiffness/achiness. Could that be from the herceptin? I've been on it since late july but chemo apparently has an antiinflammatory effect which might have overridden other symptoms. Please excuse me if I'm repeating myself, soemtimes I don't remember what i posted where! I'd like to try that curcumin stuff LeeA recommends but I have a feeling that is not permitted on the trial i'm on.
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Forever...hope you feel better. I only had taxol, but I would always have a day or two when I was wiped out. There were a few days when I didn't get out of bed either, other than to make some soup. Herceptin made me very tired for a day or so also. If you can try to get up and at least walk around a little, but most important is to listen to your body. If you need to rest, than do so. The docs don't want you to overdo it and make yourself sick.
Cypher...during chemo, I was on a low dose of Cymbalta (I had sent myself into a panic disorder early on). I believe it helped a lot with avoiding joint stiffness as I had very little. However, I had to change when I started tamoxifen due to interactions. I was still on herceptin and I did start to have, and continue to have some stiffness. Once I am up and walking around, it goes away for the most part, except a spot under my scapula. Not sure whether it was related to herceptin, but I do think it is a se of tamoxifen for many. I am going to get back on circumin, or turmeric, as I am done. Check with your doc first though.
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cypher - I had some additional achiness and headaches on herceptin only - during chemo you're receiving steroids which can keep the achiness at bay.
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FOREVER:
With FEC, I had one bad week..could not do anything for the entire week..then all of the sudden I would feel normal. For just about 2 weeks. So I bet you will start feeling better soon. I never had ringing in my ears, but had every other known side effect so I know how bad it sucks. You can do it! Just focus on the good weeks. I'm sorry!
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Forever, make sure you aren't taking anything with aspirin, as that can cause ringing ears too. My heart goes out to you with the FEC. I'm on taxol and herceptin for 12 weeks and it is very do-able. I really admire the women who do AC or TCH or FEC because I'm a chemo wussie.
Hopefully your normal sense of taste will come back soon. Mine did about 2.5 weeks after my first (and only) TCH treatment. Hang in there, drink water, and sleep!
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Q for everyone. I'm now 1 treatment post TCH which I didn't tolerate well. I have had 2 treatments of taxol with herceptin (weekly) with 10 more to go. I have sores on the heel of my left foot. Not terrible, no bleeding, but sore and raw. Anybody have that bizarre side effect? And if so, any thoughts on what to do? I'm starting to wonder if I'm becoming diabetic through all of this. I'm always super thirsty and I now have foot sores...arghhhh!
On a lighter note, I adopted a feral tomcat about 2.5 years ago named Smudge. He is sound asleep right now in his kitty condo and he is snoring louder than a human. He cracks me up!!
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I recall lago saying she experienced neuropathy in her left foot. Probably no connection but thought I'd throw it out there...
Cute name - Smudge!
Our dog used to snore so loud that she would awaken my husband and sometimes me as well. He would have to get up and shake her bed to get her to stop.
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Pbrain, can motrin cause that ear ringing? Interesting, I had never heard that.
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pbrain - could it potentially be hand-foot syndrome? That link doesn't list taxol as a culprit, but this one does:
http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/paclitaxel
This drug can cause a condition known as hand-foot syndrome, in which a person may experience pain, numbness, tingling, reddening, or swelling in the hands or feet. Peeling, blistering, or sores on the skin in these areas are also possible. Let your doctor know right away if you notice any of these symptoms.
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Hmmm, thanks Dancetrancer. I also have peeling skin on the pads of my fingers. And just today, I felt pain in my right heel and the skin seems to be peeling.
Weird. I'll tell my NP when I go for my treatment next week. To me it isn't the end of the world, just annoying. But I'm happy to know it isn't diabetes....at least at this point....
Lee, Smudge is a hoot. He's an all-white cat that I adopted as a kitten. He had a grey smudge on his head and the shelter ladies told me they thought he'd recently come from an Ash Wednesday mass. ;-)
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Perhaps this has already been posted - apologies if I'm duplicating an effort:
Roche breast cancer drug extends overall survival
Swiss pharma group Roche's drug Perjeta significantly extended the lives of women with an aggressive and incurable form of breast cancer compared to a placebo, according to new data from a late-stage study presented on Saturday.
The detailed data presented at the San Antonio Breast Cancer Symposium found that the risk of death was reduced by 34 percent in women treated with a combination treatment of the drugs Perjeta andHerceptin plus chemotherapy compared to women treated with Herceptin, chemotherapy and a placebo, Roche said.
Roche is hoping that the Perjeta combination will become the standard treatment for women with a form of cancer known as HER2-positive, which makes up about a quarter of all breast cancers and has no cure.
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LOL - of course, it's under the FINANCE heading at Yahoo News.
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LeeA, so maybe I should buy stock in Roche?
I'm guessing that's why it's on the "Finance" section of yahoo news. Great news for us Her2+ women though, especially those further in the fight! 0 -
Getting ready to go to bed. But 6 words- HOT FLASHES are driving me crazy! Meh!
Cypher, I looked back through my emails, I got the sleep deprivation fix meds written down, but didn't couldn't find one except black cohosh I believe that you mentioned? I've heard Effexor, but that it is hard to get off of later? And SE not that great.
I think someone at one time mentioned gabapentin? Not sure. Will look back through my notes, but would appreciate any suggestions...........:-(
Thanks for any help. I'm going to go try and sleep.0 -
Lee: I went to GNC today looking for the Curcumin and they have Tumeric which is what Curcumin is made from...is that what you take or do you order yours online...I don't want to waste my money if it isn't the correct one.
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Thank you all for weighing in on my hip pain. I love this community that is always so willing to help!
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Hi Arlene -
There's only one brand I've had any success with and it's the Doctor's Best brand - C3 with bioperine.
I had tried the Vitamin Shoppe brand and had no success - other than constipation!
Bioperine (aka black pepper) is apparently synergistic (?) with curcumin.
I just did a quick search of curcumin with bioperine on Amazon and several products come up in the results:
http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias=aps&field-keywords=curcumin+bioperine
This is the one we order:
The only time I've ever found it in a store was at a local chain called Sprouts (I think they're local to California) - anyway, it was TWICE the price of what it is on Amazon.
I have half a bottle of plain Turmeric left (Vitamin Shoppe brand) that I will probably end up tossing because it didn't do anything.
If anything, I would recommend going with a curcumin product that has the bioperine in the mix. I've also seen mention of people taking it with extra virgin olive oil.
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MsTori, years ago - when I started going through menopause - someone recommended a B vitamin but I can't remember which one it was. She said she never had another hot flash once she started taking this particular form of B.
I was pretty fortunate in that I didn't have that many hot flashes. I would have weird periods of feeling trapped/fight or flight but not what I would call true hot flashes.
I'll see if I can find anything online about which B vitamin is so helpful plus I'll email one of my online friends who may recall which B is so good for hot flashes.
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Steiner, yes, Roche might be the hot stock tip of the day...
How are you feeling? I know #1 was this past Tuesday, right?
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Thanks Lee. I'll order it online. Maybe it will help the rib pain too!
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I hope so...
Make sure you read the reviews. I don't want to influence you to purchase something that you end up being disappointed in.
FWIW - from the end of July through the first part of October I was taking 2-4 capsules per day but that's because I wanted to try to stave off any circulating cancer cells. The lack of hip pain was just a pleasant side effect.
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Lee....can't wait to find out what b vitamin that is. I take a b combo vitamin with d and haven't noticed any difference. I will try just about anything, mine are that bad.
Ms Tori...of all the side effects, I can say the hot flashes are the worst for me. I have them all day, at least twice an hour, and they are drenching. My head sweats as well as my whole body and my face practically has sweat running down it.. It is embarrassing. I was thrown into menopause with chemo, and now I have been on tamoxifen for 18 months.
I have tried everything...the blood pressure drug, no help, Pristiq, no help (or not much) and cost me $40 a month. Weaned off that and then summer started and it was awful, so I tried Effexor. Cheaper. Worked great for a couple months. Then. Back they came. Funny thing though, mine are much worse in the daytime.
And the other thing I noticed...after my surgeries, when I was taking pain meds, I hardly had a hot flash for a week. Not sure if there is any correlation, or it had something to do with the actual surgery, but I realized it after my third expander surgery.
I wish you much luck and if you find something please pm me! Lol.0 -
And if anyone knows why my picture is sideways, let me know...in the settings section it looks completely normal and upright.
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Fluffqueen, I'm seeing you upright.
Perhaps you need to clear your cache or refresh the page?
Re: the vitamin B - I'm really thinking it was vitamin B-5.
That's the one that came to mind as I was dredging up the old memory of being at a trade show and feeling overly warm and talking with a client who said B (something) had helped her so much.
Here's a link to an article about hot flash vitamins on Livestrong (they list B-5 as one of the vitamins):
http://www.livestrong.com/article/72894-vitamins-hot-flashes/
One thing to keep in mind is that some of the B vitamins can actually cause flushing so it's very important not to use one of those!
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I just searched "hot flashes" remedies and this came up.
A Cure for Hot Flashes – Apple Cider Vinegar http://www.ruthsrealfood.com/2011/11/cure-for-hot-flashes-apple-cider.html
I'm assuming the best form of ACV would be Bragg's brand because it contains the mothers (?). I've bought it at Sprouts but I know Whole Foods carries it as well. I'm going to bookmark the page because who knows what will happen when I get started on the AIs at some point down the road (i.e. in a year). I may have skated through hot flashes when I went through menopause but I may not be so lucky in the future
Link to Bragg's website:
http://bragg.com/products/bragg-organic-apple-cider-vinegar.html
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Pbrain - PPE (hand foot) can progress quite rapidly and be very nasty, limiting your activities considerably. I would probably mention it to your team before your next appointment so they can give you advice on how to deal with it!
Jenn0 -
Thank you for the encouragement! Today I got up out of bed and wasn't too bad. My in-laws came over and made supper and I think I understand the protein thing now - it was like my body involuntarily lurched towards the steak at supper and I inhaled it. I am by no means a vegetarian but even for me, I ate a lot. Body telling me to get more protein??
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LeeA, that’s the trial I’m on – to include that in the mix with herceptin for early stage bc to see if it further decreases the rate of recurrence. But .. it says there is no cure for our type of cancer? Eesh. That’s news to me! That study more or less came out in June, and the FDA speed-approved perjeta for stage IV women. I guess this is the full study, but stock prices of Roche doubtless already reflect the drug.
MsTori, black cohosh/remifemin is OTC. You need a prescription for gabapentin. It’s not technically for sleep but ... To tell the truth, I’m not exactly sure what it’s technically for! Effexor – not a clue, that wasn’t from me.
Fluffy, you’re not sideways on my screen!
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cypher, I read that line over and over again.
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New breast cancer drug is a life saver
excerpt:
Perjeta, produced by Roche, was found to be so effective that patients participating in the clinical trials but not receiving the drug were given it.
Dr Beresford said: “The results were so clear to all involved it seemed unethical not to allow the other patients access to the drug.”
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