Calling all TNs
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Babs great story!
Kelly so sorry for your friend, I cant imagine how she feels.
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Kelly: I am so sorry-you and your friend must feel completely overwhelmed by this news. Hugs.
SunnyCoconut: I would love to meet up with you! I also just found out that a friend of mine flies there regularly, so I won't be completely without friends. We are just 10 minutes from everything and there really isn't any traffic there, especially compared with Los Angeles.
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babs---love the story of survival.
Kelly--sorry bout your friend --all of us have the fear for sure. Going to get first pet scan friday and have a lump in my throat just thinking about it. I too had a good friend die 7 yrs ago from BC. It is always in our minds but I just try to supress it as I cannot control it. I can either let it affect my quality of life right now--when I feel healthy everyday or not. I choose NOT! Stay strong for your fight and do not give up. This is a forum full of strong women like you and me and we will do this together!
Maggie
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hi all, had my port put in today,getting ready for chemo.
can someone tell me what the tip is for the neulesta shot clariton/zantec? how much, how many days, can i use generic or does it have to be the real deal? thanks!
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I don't think that we will ever get over the fear of our breast cancer returning....yeah..it will get lesser in your mind as time goes on but it never really goes away.
Coming on here, for me...goes both ways..one is that I NEED to hear about all of you...all of You are a part of me now and I can't let it go...I care about every one one of you and know that you care about me too..I want to hear from you all...we all are going through this crap..if it is just finding out the diagnosis, going through treatments, or trying to find our way on how to live after treatment..different feelings but basically all the same.
The "normal" way is gone..guess we have to face it... and that is hard to do...
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Titan - 11 years ago, an acquaintance (who was a 9 year survivor then) told me that for her, the worry about recurrence was like turning down the volume of a radio. In other words, at first it was all she thought about but as the years passed, the worry subsided into the background. I was a newbie then, and as you may know, I was in remission for almost 11 years. So now I'm a newbie again and look forward to that volume lowering into the background again. I remember feeling that I had the word "CANCER" written across my forehead, but that eventually went away. I am really looking forward to being done with chemo and then radiation and then finally reconstruction - about 2013 spring, I think. You all are helping me a lot. Best and no SE's!
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Thanks flautlee..you got it about the radio/volume....the radio is background music to me now..low..but still there...
Hoping for your radio to just be background music to you very soon....
Funny stuff about the "cancer" on your forehead...now..at the store or just being out with friends at events and at work..no one even brings it up anymore...if someone asks me how I'm doing I have to take a minute to realize that they may be asking about my BC...and I'm not even 30 months out yet... (Sept 20 to be exact ha ha)...
Good friends and otherwise do forget....I think that may be a good thing....when someone asks how I'm doing I just want it to be a social thing...
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belle, I took a Claritin the day before and about an hour before the Neulasta shot. I've heard others say they just took it that morning before their shot. I didn't take Zantac, but I was already on Prilosec. I just used generic Claritin. My first shot, I felt like I had the mother of all flus or got hit by a Mack truck for about 3 days. I got the Claritin hint when I was here bitching about being achy. There was a huge difference for me with the rest of the shots. But there are some ladies here that it didn't work on, so it's not a guarantee, but taking a Claritin is easy, can't hurt and might help. Good luck!
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belle, I've been taking a clariten the day off and for 2 days after each nuelasta since my first treatment. I've also been taking Aleve twice a day on those days as well. Honestly, I really have had no bone pain at all. I feel run down and maybe a bit achey, but I'm also in my bad days of chemo. I can't tell you if it worked for me becuase I haven't gone without it but I have no problems with the shot. When I asked my oncologist nurse about this she said they believe it works becuase the shot itself causes imflammation when it's forcing your body to make WBC's. The Claritin and the Aleve acts as anti-imflammatories,
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Anyone here follow a ubber low-fat diet? I talked with the dietician on Tues at my LAST Chemo and she said that's what the studies support as the bed for TNBC. Well, that and losing my pregnancy weight.
~Stephanie
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I'm trying to stay low fat, my last chemo is on the 22nd so I'll really start after the last round along with lots and lots of cardio.
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Stephanie: Right after treatment, I followed a very low-fat diet - 20% calories from fat. There are studies that show the benefits of that on TN recurrence. Now after a year, I still eat low-fat but have eased up a bit; for one thing, there are a lot of good fats out there - nuts, oily fish etc. that should also be part of a healthy diet. Also, many low-fat choices (like yogurt) bump up flavor with sugar - and too much of that isn't good either.
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MBJ-good move!!! I am all about stress-free these days. I am changing jobs because of this. This is new life mantra now besides taking care of self and letting go. Sorry for rambling as you can see it's my passion NOW!!! Good luck girlie...
Seizures scare me!!! My brother had seizures when we were younger. He had a big fall when we were younger that triggered seizures in his teenage years. Oh by how I would cry. I was so SCARED of loosing my big brother. I would run and hide. He cried and cried when I told him I had Breast Cancer he was on the next thing smoking when I had my BMX. I woke up to him and my husbands smile. My mom is tooooooo dramatic they had her in the waiting room driving people crazy.
Paint- I felt so bad by the end of TX, but it was something about that last TX I felt no pain on that day I could have done a FLIP!!!
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Babs37- YES, that really lifted my spirits!!!! It's so draggy on the east coast RAIN and more RAIN.
Earthquakes, Tornados, and now Flooding geeessh what's next 10 feet of snow!
MBJ-now you will get SNOW!!!! Dogs love jumping around in the snow.
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Kelly41..it is not about the right words it is about realizing and being there for her to talk to. Sometimes nothing can be said and we can only pray this ugly beast leaves us. your friends story is so sad and that is what one feels. I am so sorry.
MAgs20487 Love your strength and words.
Lynniea hope all is going well with rads. I start October 3rd.
Babs 37 ..wonderful uplifting story to hear.
Belleeast...hope you are feeling OK. I was scared my first chemo but it was easier than I imagined, not the SE's but the actual time in the chair.
Titan..yes we all need each other and
Flautalee...it is hard for me to turn that radio down as yet but I hope someday I will.
Belle..I think the claritan with aleve helped me a bit but I am not sure...glad it worked for Riley and others....my first chemo the bone pain was horrendous but it improved the second and third.
Sandyjoesgirl....I know that 15% fat in a diet has been shown in a study to reduce the reoccurence of breast cancer but int hat study they aimed for 15% but found htat their patients ate an average of 23% fat daily and had significantly owered risk...definitely something to think about. I also read that there was a study that said one should never heat food in the microwave in palstic containers and one should not drink out of plastic disposable water bottles becasue the release some cancer causing substance. On this site there is an articlea bout the low fat diet.
I have my last chemo tomorrow and after all my SE's are over and treated I will ask for my records to be sent to MGH as I am changing to the onc there for follow ups...really glad I am making this move...doing the same with radiation therapy but wonder what peoples thoughts are...
there is a great local new stand alone center close ot my work and I liked the radiation onc I met on Tuesday or MGH...a 30-35 minute trek. Need a little guidance on whether the radiation is likely to be the same all over, or if I should jumpin and switch all to MGH. I know we get one good shot but wonder is the radiation all that different or fairly similar everywhere. Well...I also have to meet the rad onc from MGH next week..really felt competent about the one at the stand alone center....more dilemna's for me.
Frances how are you doing?
Rainy here today but must get to work...client asked if I was wearing a wig and I just said I ahd a great hairdresser... some people need not know.
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Stepped down my Ativan dose two days ago and am dealing with withdrawal symptoms - arghh! I went from 0.5 to 0.25. I think I'm going to need a bridge drug.
Stephanie - I do my best to keep my fat under 20%, but do allow myself some leeway. As Luah noted, there are good fats out there, so I don't mind going up a bit if I use olive oil, eat walnuts, that sort of thing. I also try and exercise 3 hours per week. The WINS study showed that under 20% reduced recurrence rates for TN by up to 42%. My doctor is a big proponent of diet/exercise.
Babs - I love the great stories. Thanks!
Really spaced out - I'll have to come back when my Ativan kicks in, lol.
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Belle: I didn't have any side effects from the Neulasta shot but it is best to have it in your belly or wherever you have the most fat cushion. It helps absorb it and it's easier on your body.
fighter: Thank you! I am really looking forward to a slower paced life. Strange how your priorities change with BC. I used to thrive on the crazy pace here.
painting: Congratulations on your last chemo!!!! It's time for a celebration. I was soooo happy to have me taste buds back and to get back to a more normal life. Hugs!
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Just got back from my regular onc check-up. All's well and I'm excited to be coming up to my 2-year anniversary!
I'll have my annual mammo next month, but not sure I'll get my annual MRI request approved due to new guidelines in Ontario. I think I've heard some of you talk about new onc practices in the US now referring TNs for MRIs... do I have that right? Do you have to meet certain criteria? (my original tumour wasn't clearly evident on the diagnostic mammo, which is how I pushed for an MRI last year post treatment.)
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Luah - there is a new "high risk" screening program in Ontario that incudes MRI and Mammograms for women over 40 but my GP says I don't qualify. Actually it's because I'm the index case. From what I gather, my daughter and possibly my sister (if she was under 50) would qualify. Go figure! Anyway, my medical onc wasn't even aware of the program. I think it's mainly for those who are deemed high risk but haven't actually been diagnosed. My mammogram is next Wednesday.
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Me again....one more thing: my medical onc didn't say anything about fat/diet but he really, really stressed exercise. I walk at least 45 minutes 4-5 times per week. I hope that's enough
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thanks everyone for the replies, i picked up clariton,aleve, stool softener,benedryl,etc. today!
today,took off bandages from port incisions,all i can say is gross,hope it heals quickly! i go to M O on wed, going early so i can pick out a wig and hats at the "just for you salon".
i think my treatments will be dose dense A/C-4 treatments every 2 wks, then 4-Tsomething every 2 wks,after treatment will be tested for BRCA if positive M O will discuss my options then.
how do i feel- scared,still can't believe this is happening but i'm just taking it one step at a time,i guess it's all any of us can do.
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Sugar, my breast surgeon and oncologist at Sloan Kettering both stressed exercise also, and all they said about diet was "no alcohol".0
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Mitymuffin - re: diet...my med onc also said no alcohol or coffee and to follow the Canada Food Guide but never anything about very low fat.
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I'm not giving up alcohol...I run, I eat right, I get lots of sleep,..I can't give up everything.
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I have been advised NO red meat and non organic chicken ( because of the hormones injected) and no sugar but sugar is hidden in many of our daily foods.
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I just think it is so funny how we are all across the world and the states and all our dr's tell us different things. At my chemo hut they had Little Debbie cakes and candy, and other sweets too! So I dont understand how if we arent supposed to have sugar why they would offer it.
I personally feel like we cant change our whole lives or let Cancer change our whole lives. Im gonna eat what I wanna eat and I am gonna drink what I wanna drink.
Does any of you woman smoke? I had quit a year before be dx but sometimes I want a cigarette and guess what I smoke it lol!
Just do what you feel like is best for you. Dont let cancer control you.
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I hardly ever drink alcohol (maybe one or two drinks a year)...so no alcohol is no big deal for me. I also used to only have one cup of instant coffee a day so giving that up was very simple, too. I now drink a pot of white tea every day and really like the taste. My favourite is Peach Blossom White Tea by Rishi. Carbs are my weakness ;(
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I am like you with the alcohol, maybe only 1 or 2 mixed drinks a year. Coffee I like in the winter time, and I have to have my caffeine.
My dr's have never mentioned not to have any of these.
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I'm more a 1 or 2 drinks several times a week gal.
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And I probably drink 3 cups of caffeinated tea every day.
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