Calling all TNs
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MBJ- my ortho wouldn't give me cortisone. He said I was an "infection risk". My port had to be removed due to cellulitis and I have had a couple of staph infections in my life. I still have a little pain, but only when the PT pushes my arm to the extreme. We both figured this was as good as it was going to get, so we agreed to stop PT. It doesn't hurt anymore in normal daily situations! Curious, is it your MX side? My MX was on the right, but my left side developed the frozen shoulder.
Kathy- CRAP!! I will be thinking good thoughts that it is nothing!!
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Kathy: Did your doc say anything about your other liver panel results: AST, bilirubin, GGT maybe (which can differentiate liver from bone)? Or doing a liver U/S? Just wondering because ALP levels can fluctuate for all kinds of reasons. I know it's hard but try not to get ahead of things....and yes, do think positive!
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Laugh - nothing about anything but ALP. Everything else was normal. I'm going do my best to not get ahead of things. I really did well with that when I was diagnosed and going through treatments, but for some reason I'm having a harder time this time.
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Oops -- autocorrect changed Luah to laugh! Kind of ironic . . .
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KSteve, I know its scary but one step at a time, one moment at a time...
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Ksteve..your alp is only 16 points over.....that's not too much but it's good they are checking on it...
FWIW..I take a bunch of supplements..5000 IU D3, multi vit. for women over 50..yeah..that's me..aspirin,.folic acid, milk thistle, flaxseed, biotin, CO QO 10, calcium w/zinc/magnesium... my d3 level is 59..working on getting that higher...my triglycerides used to very high, now they are very low..not sure what did it but I'm glad.I've got the dh taking flaxseed because his cholesterol isn't very good.
ah well..b-4 bc my blood work was very good...guess that didn't help..but I like taking this stuff...I have energy and lots of it...
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KSteve, All of this is still new to me, haven't yet had my first onc visit post chemo. Just googled the ALP test, it says there are many reasons that could cause higher numbers including medications as simple as Advil or even a fatty meal if your blood type is O or B. It sounds to me like your doc is just being cautious. Sending positive thoughts your way.
I'm off to the vitamin store today to see what they have to offer.
Titan-Milk Thistle and asprin? Daily? Regular asprin like excedrin?
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When I get overly tired now, I feel like I'm about to get sick, and my arms and legs and back start aching and I get chills. Its like coming down with a flu, but if I rest, the next day I feel fine again. I'm wondering if this is a lingering SE from treatment. I finished all treatment almost a year ago, Dec. 30, 2010. Most of the time I feel well and energetic, but if I don't get enough sleep for a couple of days (and I need 9 hours sleep) then I get these strange chills and aches. Anyone else ever feel like that?
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Mitymuffin - That happened to me the other night for the first time. Had a really long day at work, after a sleepless night. Then after I got off my eliptical I was so sore, stiff and achey I could barely move, then the chills started. Thought for sure I was coming down with something but I woke up feeling fine.
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that has happened to me too!
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tifJ: Still don't know if the cortisone will work -- Today I just feel sore at the injection site. I am so glad you can do normal activities again! I haven't been able to do anything for weeks.
Titan: You sound like me with all of the supplements. My Vit D levels didn't come up until I started taking it with food. My bloodwork was good prior to all of this, too.
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ksteve - I'm so sorry you have this added stress, but as the other women have said, your levels aren't really that high, and could be the result of so many other things - chemo does so much to our bodies, it is often hard to know what is what. Hang in there, take the Ativan if you have it - I'm sending positive thoughts your way!!
Survivor2Be - Having 3 kids sure does up the ante, doesn't it? They keep me going to be honest - I'm realistic, but so very selfish - I want every single moment I can squeeze out with them. I'm lucky, my mother lives with us (she moved in when I was first diagnosed), and she takes care of all the "day-to-day" stuff - homework, afterschool activities, breakfast/lunch/dinner, bedtimes. She is amazing, and I don't think I could do this without her, as my husband travels for a living (he's in London right now!). It leaves me free to rest during the day and spend my time just being with them in the evenings. So far, they are doing so well - their teachers are amazed at how smoothly things are going. Okay, I'm bragging on my mom here - sorry! She is just so helpful, I love to talk her up :-).
I don't do TOO much in the way of supplements - I make sure to take my Vitamin D3 (5000/day), calcium, a complex Vitamin B, a good multi-vitamin, fiber supplements. I also drink a LOT of green tea (3x/day), eat "cancer fighting" foods, and try to follow "The Anticancer Diet" as well as I can. Low fat, low carbs, good oils... Saying that, I also don't stress if I indulge - I am a foodie, and don't want to give up my enjoyment of great food and wine for this damn disease. I haven't been able to exercise much as the steroids have really sapped my muscle strength, but once I've recovered I will go back to walking/biking because it felt good to do it.
I have considered getting the test for what chemos will work, but to be honest, I kind of am burying my head in the sand on that one. I know my cancer is pretty chemo-resistant, and I'm afraid I'll come back with nothing. Definitely floating down the river DeNile, drink in hand...
My thoughts are with you as you get ready to start WBR - keep fighting like a girl, cause we sure do kick ass!!
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MBJ- Yes, it does get better, but it sure takes awhile!!
Mity- My last chemo was the Dec. 30th last year too! I don't get the chills, but the fatigue still hits me hard sometimes. I don't sleep well since I weaned off the Ativan, but I really don't want to take anything (I'm sick of pills!). Maybe I need to add some of the supplements mentioned!
Survivor- Best wishes on the WBR! I hope it obliterates the FC!!
Susan- I think floating down D'Nile sounds pretty sweet- especially with a drink in your hand! I know we have to be realistic about this damn disease, but sometimes we deserve to forget or least put it in the back of our minds for awhile!!
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Hi everyone, got a chance to catch up on all the posts.
McCrimmon'- my hip problems didn't start till 6 weeks after i finished chemo. I figure I can now have a new career as a carpenter's measuring tool......I make a perfect 90 degree angle as I stand hunched over when I get up from sitting!!!! I am also, just now losing my fingernails. My onc has no idea why I'm such a late bloomer, as i did the Taxol first.
Suze - count me in for dinner if you guys meet up, but I'm starting rads so my freedom is clipped, lol.
LuvRvm- Thank you for the study postings!! I need them for my PCP. I saw my onc this week,'and she offered me the Metformin clinical trial. I told her I'd think about it. What I failed to tell her is that I already called my PCP, and have talked him into putting me on Metformin ( he wants me to bring in the test result info for him to look at). My fasting glucose isn't "technically" high enough, but luckilly my ass is fat enough!!!
KS - crossing my fingers for nothing to worry about. As others said, many everyday things can raise ALP. Sounds like your doctor is very proactive, which is wonderful.
MBJ - I didn't much believe in cortisone shots till I got them for a shoulder problem,'then a back problem. They don't always work, but when they do, it's like a miracle!!! Hope it works for you!
Heidi, I'll NEVER pee outdoors in the winter.
Ksmatthews-- I sometimes wonder if asking questions are even useful. I met with my BS and I met with my new rad onc this week. I found out after surgery that I had DCIS and IDC. I asked them if these were two seperate cancers or the ductal had become the invasive? I got two completely polar opposite answers from them!! -
KSteve: Good your doc is being cautious, but given that all else is normal and your ALP is only slightly elevated, it might be good to ask what, if any, more benign tests could be done before a PET. PETs come with a lot of radiation and it always surprises me how quickly docs will go to them - you want to be sure it's well warranted, that no other scans could be just as effective, and that the results will be actionable. Wishing you well.
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Mcrimmon...yeah..milk thistle..supposedly good for liver function..need that...and just regular aspirin...supposed to take a baby aspirin but I take the whole deal.aspirin is supposedly good for alot of stuff...helps as a preventative in colon cancer...I dunno if it really works but it works for me...I did up my D3 to 5000 iu's but I'm going to cut back..a bit..I just swallow the whole bit at once and it is getting a little hard on my system...oh yeah..I drink the green tea also,
kathryn..my path report had something like 25% DCIS, 75% IDC...and some residual fibrodema..which kinda freaked me out..how long had that fibrodema been around and did the cancer grow from something that is supposed to be benign..help me out here ladies.
Suze..I think I love your Mom...you can brag as much as you want...I think it helps to keep our support system as busy as possible...they need to be needed..
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Survivor2be...thinking of you...such a lot to deal with..hugs and warm thoughts.
Yes Suze 35 group thing would be good!
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I want to know what everyones opinion about drinking/smoking? I was told to never do both again, because if I did the cancer would def. come back. I only have a couple of drinks a year, and I do occasionally like to smoke a cigarette. Am I going to harm myself by this?
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I don't smoke and my dad died from lung cancer after smoking unfiltered cigarettes his whole life, so I am a strong opponent, regardless... As for drinking, I probably have a couple a week, usually glasses of wine. I have no intention of stopping completely. I intend to live my life as normally as possible without worrying whether or not a glass of wine causes a recurrence. There are other benefits of an occasional drink that, in my mind, balance out the risks. There are several threads discussing the pros and cons of drinking. It is a matter of much controversy and everyone needs to determine her own risk tolerance.
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Suze: how awesome you have your mom! I also have my mother in law, Whois like my second mom! It is so helpful to have that support. I'm glad you have it! I find it so frustrating to deal with 3 dramatic girls who never stop talking!!! But, they are just like their mother!!! Keep up the fight!! The molecular test took a long time, and while I didn't have a lot of options, there were some new drugs on there. Also, I figure it's good for research so they can find out more about dumb triple negative!!!
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I agree with Michelle. I am just overall anti-smoking, but in all honesty I don't think the occasional cigarette will be a problem. I would be concerned if you were a former smoker, that it would lead to a more regular habit. As for alcohol - I enjoy wine when my taste buds aren't messed up from the chemo - and I really have no intention of giving that up. I also enjoy specialty drinks on occasion - martinis, margaritas, etc.
Honestly, everything in moderation. My QOL is VERY important to me, and that includes enjoying things that may not always be considered "healthy" every once in a while.
Survivor2Be - that is very cool that you are so close with your MIL. Mine is, well, a little strange, although we do have a good relationship. But I truly don't know what I'd do without my own mother. I know it helps her cope to be with me, doing something. Three girls, oh my! My oldest son is just starting to get to the dramatic, hormone-y stage. I can only imagine him as a pre-teen GIRL, lol!
That is interesting about the new drugs that were available - do you mind sharing what they were? I have personally "failed" on Taxol, Carboplatin, Xeloda, and Abraxane (which is the same as Taxol, so no surprise). I did have a response to AC, and based on how I'm feeling, I'm pretty sure the Halaven is working. I still have Cisplatin (slightly different from Carbo), Navelbine, Ixempra, and Gemzar to try, and if they ever start producing Doxil again, I can use that. I also have some AC left if I want, but only about 10 low-dose treatments.
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I believe everything in moderation. I like my glass of wine and the occasional cigarette. What ever keeps us sane.
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I quit smoking exactly 2 months before my first mammo. What a kick in the face for me. I will never smoke another cigarette again. We're not big drinkers either but would always have a couple if we went out. Now I just have one when go out. I've also started regular exercse and eating better.
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I think everything in moderation too, and I too dont wan't to have to live my whole life worrrying about if what I am doing will cause a reoccurance. I have smoked off and on for that last 6 years, but I may smoke a pack over a weeks time and then not touch another one for months. Thanks for all the input though.
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I'm in agreement with those who've said "everything in moderation" when it comes to alcohol. I have switched to red wine from white because of its health benefits but I have no intention of giving it up completely. Nothing I have seen about the link between alcohol and BC is conclusive as far as I'm concerned.
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I haven't seen any studies yet that have linked alcohol specifically to triple negs......my onc said don't drink..I asked him why since alcohol has been linked more to er-pr postives and to the lobular cancers...he really didn't know what to say about that.
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Here I am on the computer and heard the news come on and said good morning to all of you that are up, I looked at the clock and it is 4;30am! I have been doing this almost daily. I will go to sleep and wake up at 1pm, I need to break this cycle. It is going to be hard because they just laid off a bunch of people at my husbands work and now he has to go back to nights starting today, He goes in at 7 pm. I am still healing from surgery and can't do much yet, but need to get back to a normal schedule. Funny thing is that when hubby worked nights before we both got into really good shape because we would go running together when he got off work in the morning, as I started work at about noon. It worked perfect for us to run together. My mind feels ready to go do things but my body is still saying no, as I am still draining too much. I hope to get my drains out before xmas!
For some reason I don't like drinking anymore. Doesn't taste or sound good to me. I did not have one drop during chemo, and hardly any for the last few years. I used to love going out for a beer, and I miss that! I have never smoked (well, I have tried it, just never stuck with it) but both my parents smoked when I was growing up so I think the damage has been done!
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Suze
I'm out of town celebrating my husbands graduation (now he can work so I can rest!!) hahaha! So, when I get back I'll look at my report and let you know!! -
RE alcohol: As both the oncologists I've seen said "no alcohol" I'm certainly interested in any research or information others may find. This article gives an overview (but it is dated 2009) and includes alcohol's possible role in metastasis http://www.jocmr.org/index.php/JOCMR/article/viewArticle/138/76
I've tried to limit myself to one glass of wine a week, but I miss having a glass of wine in the evenings, or when I go out to dinner.
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I just got back from BS and got my pathology results. I'm joining the triple negative club. Not the club I wanted to join. Crap. I gotta have chemo. Crap. My tumor was 1.2 cm, no node involvement (yipee!), Grade 3. Crap. Crap. Crap. I'm angry and I'm really scared.
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