Calling all TNs
Comments
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Jenjen I had surgery first as well then chemo and rads.
Curlylocks - woo hoooo, fantastic news. I ate a lot of melon during chemo because it not only freshened my mouth but I was able to taste it and it was so light. So glad things are going well for you and no sign of cancer yay. I wasn't much of a water drinker but I quickly learn't how to be even though it was hard to get down sometimes but it's funny because now I have to have at least a couple of glasses a day. Just try and eat whatever you feel like, anything is better than nothing because then you get a queasy tummy. You will go back to your normal diet after treatment.
Titan you enjoy yourself at the casino and put a bet on for me. But do you think Kathy should be encouraged!! besides she's busy playing with birds.
Came home from work today and the man was here to hang my new drapes. They look so nice and seem to let in a lot more light.
Have a good day ladies. Sending hugs to those having treatment.
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Michele, I am absolutely DELIGHTED for you!!! No mets!!! I was told by my MO at Vanderbilt to take two Claritins (yes...two) of the 24 hour variety, one at night and one in the morning starting the day before I got each Neulasta shot and continuing for a week. I had zero bone pain for all four shots while doing AC. I hope you get through the shots okay too.
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Curly I love, love, love hearing good news! Thank you for your post on your scan. Stay well.
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Tresjure - thanks for stopping by and let us know you're well.
Titan - I already warned "old woman" that she owes me a casino day! It's one of the places I can go and forget about everything but the fun.
I'm also seconding the Claritan treatment. Mine was Claritan, Zantac and Tylenol, starting the day before and for 4 days after. Zero bone pain!
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Curlylocks, fluids are very important. I too didn't like drinking water -- for me it was because I switched from Diet Coke and Coffee upon diagnosis, so now I only had water to drink (but have since added organic green tea - yummy!).
To help get fluids down during chemo, my Onc recommended Pediolyte Pops. These are frozen flavored pops, and have electrolytes in them. I think WalMart has them, but I bought mine at Walgreens.
A trick to get the water down, is eat something that makes you thirsty, like half a teaspoon of peanut butter or a salty pretzel or a bite of a granola bar. Then the water might go down easier. But for when you are on the couch, and not feeling really well, have a Pedioltye Pop!
Here is a photo of what they look like so you know if you go shopping for them! http://www.amazon.com/Pedialyte-Electrolyte-Maintenance-Solution-Assorted/dp/B000ARTNNI
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thats good news curly! kathy: do keep posting about your birds... 2 of them have become my constant companions, every morning, ever since my chemo journey began in Nov.
and thanks for updating us about fighter. and thanks for all the info you keep sharing ladies!
6 more days left for last taxol. Husband in Miami for work and its quite a challenge handling myself and managing my 5 year old daughter. She borrowed some money from me and filled up her small pink purse... said "I am going shopping"! My mom asked her if she wanted to buy a lovely dress for her birthday in May... she replied "No, I am not buying anything for me. I am going to buy some chemo medicines for my mom"
felt happy as well as sad..at the same time.
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Just checking in ladies all is well!!! I can feel my lump shrinking!! YES! I really had to adjust to being back in treatment. Not so bad this combo is doing the job with mild side effects. Maybe hair thinning, however either way it goes I can take it.
Local spread is what is going on I believe I said new primary. At either rate, we just love that little KITTY that sparked everything and got my attention.
Thanks for all your thoughts and concerns!!!
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BanR: talked to my MO on Monday about when to start chemo after surgery to receive the best outcome. He does not seem to think that within 21 days is necessarily better than within 30 days... He says ideally you should receive chemo within 12 weeks after surgery. My MO also says, for TNBC, of course you want to move everything as quick as possible, so for those had a delayed chemo treatment, sometimes they have other health concerns that made the delay, so that might contribute to the poorer outcome as well. Does that make sense to you? Anyway, I am convinced that my chemo started at a good schedule, and am not gonna let it bother me a bit. :-)
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Fighter: good to hear that your lump is shrinking!
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BanR that is priceless. She was only thinking of you bless her little heart but when exactly were you going to get the borrowed money back. lol Only six more to go and soon it will be over.
Kath hope you get your day at the casino soon. Tell mum to keep well then you can go.
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cocker: its priceless indeed! as for my money...i got it back the moment she slept!!
I have one more to go. It is scheduled for 19th feb. jianchi: thanks a ton. yes, even i am getting the chemo thing out of my mind.
we all are Her negative. I was Her borderline as per IHC. However FISH said its Her negative. I was just thinking what it means exactly. Does it mean that my tumor had few cells which were over expressing Her? What happens to those cells then? Since FISH was negative I didnt get treated for Her during chemo.
My Mo clarified, that my cells were expressing Her but not expressing it enough. Didn't understand him completely. What happens to that borderline expression of Her then. It remains untreated!
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BanR: my boy just turned 6 this month. Wish your daughter a great birthday in May! Also, all the best to your last chemo, mine will be just right after you :-). I am waiting for my genetic report, and hopefully I can see my second opinion of BS ASAP.
All the best to everybody!
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Putting my 2 cents in about chemo and when one should get it to get the best results. I was reading some of the posts yesterday and thought I would throw another rench on the subject. In case you didn't read my post 26 YEAR SURVIVOR, I never had chemo and back in 1986 if your nodes were clear no chemo was given. Wonder how many of those ladies were TN??? Again in 2003, with my second diagnosis in the other breast, I was stage 2 and refused the chemo. Well still here alive and kicking, so what that tells me is someday they will be able to test us and they will find that some do not need chemo, remember I told you this. Oh and btw I was grade 3 and I am brac 1 positive, so I am actually 27 almost 28, i think, survivor. It makes me so sad when I hear so much bad news about triple negative breast cancer, I am proof it is not all that bad. Sure back in 1986 you might say "how did you know it was TN, well my doctor told me I was not a candidate for tamoxifin because I was not hormone sensitive and it would not work for me, imagine way back then they must of known something. My daughter diagnosed 6 mo's after my second diagnosis, ya that was really something, nearly killed me, well back in 2004 they still didn't know to much about TN and she just had 4 treatments of chemo and a double mastectomy with tran flap. No other treatments, she had "not a very good speller" adrimicin, citoxin??? Well she is just doing fabulous and here is where I "Praise the Lord, Amen". I know I might be making light of a bad subject but I so wish more women would come back to give the ones who are overwhelmed by this diagnosis a bit of hope, because there is so much hope and please remember most women survive....that is a fact.
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Thank you so much Ms. Noni for reaching out to me!! And I am keeping the FAITH.....
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BanR: I am seeing my second opinion BS 3 weeks after my chemo. Before that, they ordered me a mammogram, an ultrasound, and a MRI. My MRI was clear after my lumpectomy, and before my chemo. I wonder how many of you who had surgery first, then chemo received another set of mammogram, ultrasound and MRI?
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nonijones: your story is very inspiring! Thank you for spending the time, and leaving some hope here!!!
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Noni thank you for that post. It was uplifting!
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Noni, Congrats and I've read your posts a long time ago and have posted to people about your amazing story! You are one of our role models for sure!
Fighter, Yipee - so awesome to see you post here. I have thought of you every day and so happy to see that your treatment is working!
Jianchi, my surveillance includes an ultrasound and MRI - each year and we flip flop each one at 6-month intervals, so that every 6 months I am getting some type of screening by one of those options. So since my bmx on 1/2012 I have had MRIs and ultrasounds each year. I don't have a mammo due to my BMX and because mammo did not show my tumor (even though it was palpable and I had very tiny breasts). I went on this protocol after reading some posts throughout the bc website, and my bs approved the protocol for me. His standard protocol would have been ultrasound 1x a year, because he doesn't place me in a high risk bracket.
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Inspiredbydolce, what section of the store do you find those pedialyte pops? I've never noticed them.
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Meg- you can find the Pedialyte Pops in the pharmacy area where regular children's medicines are.
Fighter- thanks for the update- glad to hear those nasty lumps are shrinking!! Keep up the good fight!
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Hey Fighter...good to hear from you! sucks you have to do this again but glad that things are working out for you....!
Hey noni...thanks for coming back here now and then....love you for that!
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I just finished reading all the posts since I was here last. I hope my chemo brain remembers what I read so I can make a few comments! Forgive me if I get something wrong or forget someone...
Congrats to curlylocks and fighter for their great news!
To the long term survivors - thanks for dropping in to encourage all of us. You inspire hope and we hope you visit often.
I had surgery, chemo and then radiation.
Cocker - you have such a way with words. I laugh out loud at some of the things you say! I'm so glad you're here to lighten things up a little. We all need laughter - thank you!
Kathy - I love the bird story! I think cocker is right about why you have a feathered friend! I hope you'll soon be gambling and, if you win more money than you know what to do with, pm me and I'll be happy to help you spend it!
When I was first diagnosed, I wanted to read all the stats I could find. Now? Not so much. I say, it is what it is, and survival is a crapshoot. Also, I'm not convinced a lack of Vitamin D is linked to cancer. I took 50,000 iu weekly for probably 10 years and I still got cancer.
Titan - if you win more money than you know what to do with, PM me and I'll help you out :-)
I am scheduled for an ultrasound of my kidney in hopes of finding the cause of the hydronephrosis. I'm hoping to get good results! My GynOnc will check CA-125 level in a week or so, and if the level is higher than the previous test, he's recommending laparoscopic surgery for a look see and abdominal/pelvic washing to test for cancer cells.
Cancer...the gift that just keeps on giving...
For those in treatment, stay strong and keep fighting! For everyone else, be vigilant and enjoy life! We can and will do this.
Hugs to all, Lisa
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thank you Inspired. I am just very worried about what the imagines will show. Anyway, I guess I will listen to the docs.
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Fighter - you just keep on fighting girl. We are all in your pocket. Big hugs
Noni - now yours are the stats I like reading about or hearing about. Gives me such a lot of hope. Keep going girl and your daughter.
Jianchi - I never had any further scans after surgery, then chemo then rads. We only get them if we have symptoms for more than two weeks but I do see my BS every three months and I'm not ready to give him up yet, anyway he's gorgeous looking and so gentle.
Titan - well did you win anything. After Journey, send me the left overs!!
Journey I've got a feeling that, that Kathy, is on her way to the casino right now. Wouldn't put it past her and how dare she call our mum an 'old woman'. (I lost my mum at 16 yrs so I have decided to share hers lol). Journey I hate those tests they cause me nothing but anxiety so I'd rather not have them but good on you for being strong, unlike me lol
Now ladies, (close your eyes AL Husband). I have another boil in a "you know where place". This is the second one since I had chemo. Never had them before that. It's so hard to walk I have to keep making out I have a bad back at work lol. Anyone got any ideas why I am getting them now and (no smart remarks from Kathy please). On top of that I have an ulcer on my tongue (Isn't that a sign of too much swearing lol). Probably about the bleeding boil.
Have a good day ladies. Friday for me tomorrow and am I waiting for it or what.
Hugs and love to you all.
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Jianchi, I know how you feel about the worrying. Last year I had an ultrasound, and a few weeks later thought I felt a pain, so I went and had another ultrasound done! It's natural to worry, especially early into this process. Over time, you will worry less about things. Your images will show you healthy!
I found the Pedialytes maybe in the baby aisle section? You can ask the Pharmacist to point to what aisle they are in, if you can't find them. They were on the bottom shelf.
I think $9.99 for the box.
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Oh Journey! I will be praying and hoping everything turns out great for you. Hang in there ... sending you a hug. ((hug)0
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Thanks noni for posting! I agree with you. I know someone who got diagnosed 10 years before. The doc didn't use the word triple negative, but he said that her tumor wouldn't respond to tamoxifin.
Jianchi: my onco said no mammograms immediately. But then post my rads he will plan my follow up schedule. I wonder how mammograms will feel now..all the stretching and pressing on a breast which has dried stitch scars on the lump area and axilla.
cocker: i love your sense of humor! you mentioned that you lost your mom when you were 16.. must have been difficult for you and her too..
journey: please keep us posted. I will pray for you.
warm wishes to everybody here..
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BanR my mum died of ovarian cancer. It was at a time when young girls needed their mum the most but it wasn't to be. Back then we were more cossetted I think, not told much about family illnesses. We weren't allowed out at night and my brothers would have to take me anywhere I wanted to go. Needless to say I adored my brothers. I think the girls of today are so much more confident and grown up than when I was at that age. I did go through the BRACA test but it came up inconclusive whatever that means. But cancer or not I wish she was here today to see my Alan and my daughters and my grandchildren. We adopted my eldest girl Cindy who came to me when she was 5 days old and I loved her on sight. Then when she was 9 months old I fell pregnant out of the blue and so my Mandy was born but I couldn't have anymore and have been more than content. We are very very close and I adore both of them but it would have been nice to have shared the times with my mum. So I envy ladies who still have their mums to love and I hate it when they call them a nuisance or don't have time for them. (not that my Kathy does cause she adores her mum). So I'm hoping she will share her cyber mum with me.
As for a sense of humour I have always loved to laugh it gets you through so many things and got me through cancer. I would laugh to see a pudding roll down the street. I love a good joke even the riskae (is that the right spelling ) ones. I am always drawn to someone with a sense of humour and I love to make people laugh if I can. I think living with cancer doesn't always have to be doom and gloom unless you are suffering or going through treatment then its different. Not to put anyone down on this site because everyone is different and everyone suffers in their own way but I really believe that for me personally there are people far worse off than me. I am well at the moment and that is a joy in itself and hopefully it will stay that way but I'm aware of and really feel for the people that are not well.
Well I'm going to take me boil to bed, probably not be able to sit down for a week, so have a good day ladies (nighttime here).
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Cocker: Thanks for sharing a small part of your life with us..about your mom and growing up without her. I hate children losing their moms and when I got diagnosed with cancer, I didnt fear my death even one bit but I feared my daughter losing me, growing up without her mom..even the thought of it scares me. Will fight, and keep on doing so... just to ensure that my daughter has her mom with her for as long as possible! And I agree, just adding a little humor to our problems, makes them a little more manageable!! Passing on warm wishes to you and your family.
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jianchi: what your doc says about chemo timing makes perfect sense. I am familiar with a study done showing that women given chemo within 1-12 weeks of surgery had better outcomes versus another group 12-24 weeks. While it's easy to get caught up worrying, a few weeks delay is not going to alter the course of things. (For the record, I waited 3 weeks for a diagnosis; 4 weeks to surgery #1, 3 weeks to surgery #2, 2 1/2 weeks to chemo start. While I sweated the lapsed time at the time, today I am fine... as are most other women diagnosed with TN.) The important thing is to be well-healed (so you are not overtaken by infection), rested and feeling well when chemo starts. Fighting weight, so to speak. Speaking of whom....
fighter: so glad to hear that things are going well for you.
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