Calling all TNs
Comments
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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!!0 -
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!!0 -
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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Here's what I'm hoping for all of you in the New Year:
May you eat what you want, drink what you like, and exercise as you wish without fear or guilt.
I realize that to a degree the fear one holds onto is due, in part, to our individual differences in nature and BC stage. I also believe that those who stay in these forums do so out of some need for knowledge, camaraderie and reassurance.
BUT, I also realize that it is possible to move on with one's life and move past all the uncertainty. I no longer fear every little cough, ache or pain. I no longer think twice about what I eat or drink. I no longer feel the need to exercise, exercise, exercise at a gym (you guys know I'm active by nature anyway).
So, what I'm saying is (and I hope I don't offend anyone)... I feel it is truly possible to get beyond all this BC crap, and the ones that do are the ones that no longer post in here. I know, because I've done it!
I'm here because I want to be, not because I have to be. I'm here to offer my silly distractions.
Speaking of:
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Oh yeah... I have an onc appt. Wednesday.... I have to keep reminding myself not to *forget* it!
Wow...
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Thank you Heidi.
I know eventually we can move past it, right now I still don't have a head of hair I'm 100% comfortable leaving the house with. My boob is still peeling from radiation and my scars are still very obvious.
I still need to be here and to know that I'm not alone. Still trying to find my "new" normal and reading posts like yours helps me to see the light at the end of the tunnel.
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mccrimmon- I feel like it was only yesterday that I was at your stage in tx. More proof that time flies and life moves on... a good thing! In fact, I was 2.3 cm, Grade 3, IIa and 0/2 nodes...fairly similar.
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I'll contend with moderation as well. Not a big drinker anyways, but when I am out w/ the girls I am known to have 2 or 3 drinks and this is an annual event though. I sincerely don't think having one or two drinks occasionally would increase your risks by that much????
We have a family friend that DRINKS and she is a little looney but no cancer. Who really knows???
Suze35- isn't it wonderful to have a great support system. That's what family is for. I don't know what I would do without their encouraging words. I am feeling better these days and I am really looking into giving back. I may start radomly dropping in on some group discussion with people going through the battle.
MBJ-I hope that shoulder gets better.
Those that are doing this once again you are in my prayers. Take care of yourself and continue to be your best adovcate.
I have a question our hormone ++ sisters that have gone through chemo, radiation, and anti-hormone drugs and still reoccur. How does this happen or there is no way to stop how cancer actually behaves. Sorry I sound like a newbie. I don't read up on hormone ++ as much.
Everyone ready for the holidays???? Does anyone watch HGTV?? I am totally in love Dina and Donna shows. I just love their decorating styles.
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Fighter_34 - there really is no way to know who will have a recurrence and who won't, including hormone positive ladies. My good friend has had BC three times, she was ER+ on all of them. First time she did a lumpectomy and rads, second time she did a BMX and chemo and the third time (after more than 10 years) she had a MX. She is the picture of health, exercises six times a week including yoga, and practices moderation in every way. There are no guarantees, chemo is not insurance and there is still so little known about what REALLY causes BC.
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Heidi - Your post gave me so much hope that I can and will move past this some day. I wish I were at that point now, but I'm not.....yet. I have my "routine" 6 month mammo scheduled tomorrow, and I'm a nervous wreck. When does that stop?
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Char sorry you are here, my dx was sim. to yours and after 6 TAC, and a lumpectomy I am ned. So stay positive.
heide thanks for the input and the cute pic!
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Thank you both Heidi and Luvrving. I want to do what I should to prevent relapse, but after listening to everyone on here the last few months, i realize that it's a crapshoot! I just don't want to spend so much time doing the things I SHOULD do, that I miss doing the things I WANT to do.
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Hi to everyone, i have so much trouble keeping up with everyone so please don't be offended if i don't mention all your names.
In the last two years i have had two cousins and three friends die suddenly - all under the age of 45. Heart attacks/brain haemorrhage's. Three of those never drank or smoked . I will continue to enjoy my life - because who knows.
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