TRIPLE POSITIVE GROUP
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Forever,
Yes. lol
Chemo destroys rapid growing cells. Cancer, yes, and then there are healthy normal rapid growing cells in the digestive tract (including the mouth, which is why some of us get sores there). Chemo is killing them too.
Protein is the building block upon which all cells are made. Without it, your body can't repair (the often unseen) chemo damage to your healthy cells.
My Onc nutritionist recommended 100 grams of protein a day. I met that easily with FAGE 0% yogurt. I mixed it in soup, chili, ate it plain or with PB2, put it in smoothies on the days when NOTHING sounded good but a cold frozen smoothie soothed the mouth.
Your body is being torn down and trying to remake itself after every tx. If you don't give it the building block, you can expect to feel worse with each tx.
Did that make sense?
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TonLee, thak you for that explanation. Now a lot of things make more sense!
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Bren,
You're welcome
LeeA,
I took your advice and posted an article on things to know before starting tx. I linked it here in the OP.
If you guys would take a quick look at it and let me know if I should change anything.....I did it fast and didn't want to come across as abrupt. You guys know me, and seem to forgive that...lol. Someone reading it cold might be offended.
Thanks,
t
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LeeA- thank you! I bookmarked all the links. I am going to bring them up with my MO this week.
cypher- thanks for refreshing my memory. I couldn't recall the gabapentin. This Friday is my 4th chemo and when I will see my MO. So all of this is being brought up. The lack of sleep, hot flashes, everything.
Fluff- I will let you know what works if I find it. Mine are mostly at night. But having 3-4 during the day. They come on fast and then leave pretty fast. If I have my buff on, it comes flying off! My head sweats too. Pleasant. :-/. Also, I'm seeing you sideways. Lol! Are you using an Apple device? I had the same issues. Certain photos showed me sideways after posting but others were fine. ?? So I am leaving this pic alone for now.
TonLee- I hadn't thought of mixing the yogurt in soups or other hot foods. I will try it. I was only doing the smoothie. Thanks!
Getting ready for physical therapy this morning and then finish tying up things for my Dads birthday and Christmas since my treatment is this Friday. Trying not to think about it. Last tx, I was nauseous before they even started. :-/ Thank you again for the hot flash and sleeping advice. :-)0 -
TonLee- I think it is great! This is what I wish I had read after my test results. When I was searching around, I definitely would have printed this out. It's direct and and firm, and for me, that's what I needed. Thank you for writing this and posting it.
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Not to expose my ignorance, but.... is triple positive:
1. ER/PR receptor +
2. Her 2 +
3. and what?
And what is the significance of having all three? (I am positive for the first two, and want to understand this.)
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Thanks Tori
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Triple positive means:
ER +
PR +
Her2+
Any one of those can be negative or positive.
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TonLee,
I posted on yr new forum....touche!
I've been trying those yoga poses and it's very hard without an instructor. Think I've figured out a few.
I work out at lea st 5 days a week since I finished rads in early June yet I am so stiff , lack flexibilty and have so much trouble with my balance. I didn't realize how bad it was until I felt well enough and happy enough to try dance aound the house to my favorite music after rads....when I started my AI. Latin dancing is just not the same when your hips don't swing!
I wish I had started yoga sooner and hope it is the answer .0 -
fluff - just wanted to say I can relate to you on the intensity of the hotflashes. It's certainly awful. I am sad to hear yours are still continuing at 18 months post...I had heard that most people adjust to Tamoxifen after about 6 months. I get about 20 flashes a day; they wake me up 5 to 6 times a night. It's exhausting. During the day when I am teaching and working 1:1 with students, it is SO embarrasing to have to wipe the sweat off of my face while talking to them. I also have lots of gyn issues with the Tamox - the typical dryness we all have, but also urinary urgency, burning and itching at times, and issues with libido and loss of the big O. I got quite depressed (either a direct side effect or as a result of trying to live with these side effects) and gave up on Tamoxifen. All of my side effects moderated considerably - my flashes became "warm" and my gyn issues improved markedly. However, I really want to do everything I can to protect myself, so I've decided to try it again, but starting at a lower dose. Unfortunately, even at a lower dose almost all of these symptoms have come back in just one week's time! Another weird thing is that I have never gotten rid of my oral thrush I developed during chemo last spring...but it was improving a lot while off Tamoxifen...once I started it, BAM it came back pretty strong. I'm suspecting the alteration in my estrogen levels is affecting that in some weird way, too - it has to be more than just coincidence!
I've thought about Effexor but (1) I REALLY don't want to take another medication and see what it does to me (2) Effexor also can cause sexual dysfunction, and the only thing it would help with is the hot flashes. Even though the hot flashes are misery, the urinary issues and itching really are much more difficult to live with!!!
Anyways, I am seeing both my gyn and oncologist this week to discuss all these symptoms with them, make sure I don't have an infection, etc. I'm going to ask my MO his opinion on the safety of the e-ring or some type of local estrogen cream/etc in my case. I know it is controversial, as they don't know how much really gets into the bloodstream. Anyone have any experience with it/input/opinions?
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Wow so much to catch up with---Everyone geeeze we'd have no boards if we didn't complain and look at all the info u learn about a lot of SE---which I blamed everything on chemo so I didn't give it much thouht then--and now I blame everything on my meds so it's OK.
I think Pbrain mentioned about complaining-- Remeber there are no rules here==u tell or ask how u feel.
And I do remember reading if u get cancer and don't have chemo--u can still get chemo brain--It's still a mixed up wonder why it happens.
And the scans aren't some of them nuclear--whsst ever is injected in u.which sounds so outerspacey to me.
And I truly feel bad for all that u gals are going thru it must be so scary and puzzling to all of u.I wish u calmness in this road of bumps.
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I think my platelets are getting low. Bleeding from gums, nose, vaginal and rectal bleeding, petechiae on my chest...my MO is having me come in to check platelet levels and possible transfusion. I was/am feeling better today too! Day 7 and I finally hit my upswing, had a great night sleep last night and haven't had to take any anti-nausea stuff today. Hopefully the bleeding from all orifices stops!
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steiner - platelets have a very short life in the body, some days they are high, next day they can be low. Like all types of blood cells they take a hit from chemo, but they can repair themselves more quickly. If yours remain low a platelet transfusion is easy - takes about 20 minutes, and contains so few red blood cells you do not need to be cross-matched. They will type your blood anyway, and you should have in-type if they have it, and you should have single donor/irradiated platelets if you need to be transfused.
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lost my pinky toe nail over the weekend gosh 7 months after chemo this really sucks
on to Good news I have a job interview with the hospital tomorrow gosh I am so nervous it's been years for interviews... Crossing my fingers I really need a job.
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I too craved protein during treatment - tuna, salmon, beef and also, fresh greens (like swiss chard & kale). I could have lived on just those with yogurt during all of treatment. I still have protein cravings, but not as much.
I started the apple cider vinegar today - I'll let you know if it helps, I'm currently taking Effexor for hot flashes, like someone mentioned, it seemed to help at first, but not so much now, my PCP has increased it a couple of times, each time I increased, it helped for a short time, then... back to the beginning, so I really hope the apple cider vinegar (Bragg's) helps. I had a friend that lost a lot of weight by just adding some to a glass of water a day, didn't really change anything else - so maybe it's the miracle cure we've all been waiting for
I'd be cautious about using black cohosh/remifemin without more info, not sure how it works - cypher do you have more info on that?
Fluffy - your picture is fine on my screen.
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ang My nails still haven't fully recovered and it's 2 years post final chemo. My finger nails are better than my toe nails, which still look like crap, and some still tend to lift a little. But then I never did totally lose any nails, just had to cut them back to about 1/3 of the nail bed.
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Ang- Good luck with your job interview. Got my fingers crossed for you. Hugs Eileen
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pbrain the palms of my hands were bright red during taxotere, it was the weirdest thing. I also had some peeling of skin
forever i found drinking protein drinks really helped when i couldn't force myself to eat (ensure). They would at least fill my tummy when food was just not appealing
HOT FLASHES ok...so I stopped tamox for 2 wks for surgery...went back on and magically my hot flashes have all but disappeared. Now obviously i am happy about that but shit...is this stuff not working????? does it take time to build up in your system again? I have been back on for about 7 wks. It's freaking me out
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rozem---could it just mean u'r tolerating it better and that it's working. U know I don't know but it makes sense to me.
Ang GOOD LUCK-U should know more about hospitals than most.
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Dance, think about trying Paxil. I've only had a few hot flashes ever, and I'm 2 years post-menopausal. It isn't as "targeted" a drug as Effexor, so it is easier to stop taking (less side effects).
Thanks everyone for the info on the peeling and redness. I was worrying about diabetes because I'm so dang thirsty!!!
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BIG QUESTION for all you triple +++ ladies out there... i have a sclerotic lesion that showed on my nm bone scan at diagnosis and a year later is still there... they may follow with biopsy, i was stage 1 when diagnosed, and have not been told otherwise... my first onc said that was "probably" arthritis but im 28.... have any of you have had any of this sclerotic lesions and were they mets or not? i would appreciate
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LindaKR- 2years man that stinks
Eileen, Camillegal, Thank you so much.
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Awnoo,
I don't have bone mets. And someone here may chime in...but if you are looking for a variety of answers, you may want to go to the stage 4 board and read about bone mets.....
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I can't keep up!
Ang - good luck on your job interview!
MsTori, PBrain, Steiner - you're getting closer. Hang in.
Awnoo - I had a sclerotic lesion show up in a bone scan & I was told it was most likely a slight injury I didn't even know I had. It was gone at a later scan. I also had two bone scans 9 months apart that both showed "focal activity" in my front and back left ribs. I'm told its related to the trauma to the area from surgery and expansions, and nothing to worry about (ha! easy for them to tell me not to worry!) That's the problem with scans - while good for peace of mind in one way, they can drive us crazy with worry over stuff that really isn't a problem. Yours could very well be arthristis or any other number of things other than mets.
Regarding the perjeta - I know the trial has been for metastatic BC. If it is eventually approved for Stage I, like herceptin was originally for advanced BC only and then became approved for early stage, will it be available for women who have already finished chemo? Or will it only be effective when given with chemo? Has anyone read anything about that?
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Awnoo I'm sorry I won't be much help, but I would imagine if it was something to really be concerned about u'r Drs. would have been right on it. I know u'r so young but all this treatment does a number on u'r body and u could very well have started with arthritis anyway --but talk to u Drs. about it cuz u'r concerned and see what else they say. Tell them u are worried about this.
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pbrain - thanks for the tip...but unfortunately you cannot take Paxil with Tamoxifen. It reduces Tamoxifen's effectiveness.
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TonLee - Excellent post and great thread! I just read it and responded on the thread.
We've had two other home health nurses here since the first night and both of them have been excellent caregivers.
ang - Sorry to hear about the little toenail! Also, sending positive thoughts/wishes on the job interview!
Linda - I'll be curious to hear how the Bragg's works. I was taking it for a while during the summer and might start taking it again post-chemo (as long as it doesn't conflict with Herceptin).
Steiner - I read your post earlier today and I've been thinking about it all day! I hope you get everything squared away!
kayb - Thanks for sharing the story about your doctor's IBC patient! These are the accounts that help keep the dark cloud away, at least for me!
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My update - still on the intravenous Vancomycin. No fever. Some pain but I guess that's to be expected considering Friday's procedure was 2.5 hours under general anesthesia. Lots of drain output (but at least down to one drain). Yesterday's output was over 80ml...
I hope everyone has a good week!
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Lee - glad to hear that it's going somewhat better this week.
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TonLee, you linked it in the OP? I don’t understand!
Cami, good to see you! I was wondering where you’d been. Hope you’re doing ok.
Ang, good luck tomorrow!
Linda – remifemin was recommended to me re hot flashes, but I can’t take it b/c I’m on a clinical trial. In any case I haven’t really had bad ones
Shore, I’m on a clinical trial where they are adding pertuzamab to the mix for early stage her2+ women. I assume that if it is shown to significantly reduce recurrence rates, it will become standard treatment. I think the question is – are they doing any trials on early stage women where they add it to the mix post chemo? I’m guessing no, so if it’s not in the works now…. If anyone who reads this wants to know more about the trial, PM me.
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Thanks cypher! And it's so cool you're in a clinical trial!
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