Calling all TNs
Comments
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Workmother - so glad your 2nd treatment went better! Good luck with your "haircut"
As long as you're feeling well you should absolutely take a little vacation! I always try to make the most of my good days.I see you're in Northport, I'm a Long Island girl too! Are you being treated at Sloan in Commack?
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Donna, so glad your second tx went well. Sorry your tummy isn't tip top, but that will improve. If you feel up to it, take a mini vacation. I traveled with a can of Lysol so I could sanitize "things" I might come in contact with. I was adamant about germs and had no toleration for those who came to work sick because they didn't want to use their days off.
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Hey ladies..a friend's mom is just done with chemo..now she is taking antibiotics for a couple of weeks before rads...have any of you heard of this or done this...? I think she is TN too..her daughter isn't sure..just said that her mom was low on estrogen..so anyway...have any of you heard of this????
And I'm waiting to hear Lebron's decision..I'm from Ohio and I'm so tired of the hype and media! They are saying that there is extra security around Lebron's house tonight and in Cleveland.
I'm hoping that there are some of you that don't know what I'm talking about...I keep telling my son that this isn't important at all..in the scheme of things... hell..find a cure for cancer..who gives a damn who Lebron is playing for.
(sorry for the rant..but really!)
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Laura - welcome, you will find a lot of support here, the women are wonderful
Luah - Congrats on being done, done, done!
Donna - glad to hear you have the second AC out of the way, you're in countdown mode for the AC, that's how I always looked at it anyway.
Can't remember who asked, but I did travel during chemo. We took a road trip from NOLA to Ashville, toured the Biltmore and walked around a few other places. I used Purell and washed my hands regularly and did fine. I'm sure you'll do fine too - it feels good to get away and think of something other than cancer.
Hope everyone is having a great day!
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Laura: Welcome to the group and as the others have said, you will find great support here.
Luah: Congratulations on getting through and getting done! Have you planned anything special. I know during chemo I would make little plans so I would have something to look forward to at the end of feeling awful. This year, after my exchange surgery when I am all healed we are taking a short trip to London.
workmother: I say do what you can while you are feeling great. I was so relieved when I started feeling ok after each round of chemo that all I wanted to do was to get away. Take some hand sanitizer and just be sure to get your rest and not push yourself too hard. It's really important, I think, to pamper ourselves during this trying time.
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8titan: Lebron who???? I have to admit, I have no idea what you are talking about.0
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He went to Miami Titan!!! How pissed is Cleveland?? Oh well, forget going to a Miami game with Bosh, D-Wade and Lebron. The ticket prices will be enormous paying for all that talent
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Cleveland is pissed! Some people are burning their Lebron jerseys...I think he is a skunk..not so much that he is going (because I really think he intentionally threw a couple of play off games).but that he didn't even tell his boss...the whole thing reeks
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My DS watched and called out the news. I am still in my chemo fog, kept asking, "but where's Shaq now?" My DH explained all. I go back to the days of watching Magic play college ball, which shows my age.
Had my follow-up onc visit yesterday and get a mammo today. Then nothing for 3 mos, when we do blood work again.
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I just think Lebron James is tired to carry all this team on his back and get no ring at the end...
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Kinda like cancer..huh?...you HAVE to do everything yourself (surgery, chemo,rads)...but it sure is nice to have some support along the way...
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And some folks (like Kobe) think they don't need support, but it really is good to have.
Had my mammo today. Gal taking history said, "so you're taking tamoxifen now." No--- A PA the other day (after I had filled out 3 pages of paperwork she didn't even look at), "so your nodes were affected." No----
Anyway, clear mammo, good bloodwork, will have skin check with rads team, then wait until fall.
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It does make you wonder why you have to come in to a dr. office 1/2 hour early to fill out paperwork thta they don't even read!!!
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BTW, Congratulations, retrievermom! That's wonderful news.
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It's easy to get upset with the players when they abandon "your team", especially when you thought they were a part of the city and culture. I try to think "what would I do in their place" to help the frustration when this happens.
Retriver- Isn't that just so frustrating when they don't read the paperwork. I know this isn't the nicest thing to do, but when I have had that happen I respond with "I filled it out, it's in the paperwork you're holding" or "I'm sorry, did I miss that question on the paperwork you have". Glad the news was good.
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Jenn I like part two of your response.
I had a dentist when I was expecting DS#3 who did the exrays and all then gasped "You're pregnant!" I thought he had read the chart and was handling me accordingly. I don't trust that they read my name anymore.However, I am allergic to CT contrast, and always write that down no matter what I am going to Dr. for. Well, I had to have a CT in Feb. and it took an act of congress because you have to do stuff differently if you have that allergy. But each step of the way, they read my chart and did their part. There are some good ones out there.
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well surgery is on the 6th august dubble mastectomy then rads.tummy tuck new boobs in December . luah im so happy you are done with chemo !!!! im almost their two one lefti must have over looked it the other day.
have a grate weekend girls!
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I too am tired sometimes of having to explain to my oncs that I am tn..they just don't seem to get it sometimes...b-4 chemo my onc said I would be on tamoxifin for 5 years..I told him that I was Tn and that I couldn't be on tamoxifin..he went over and looked at my chart..I think he was a little shook up but dang it...how much time did he spend reading my chart b-4 I saw him for the first time???? Even though I'm very happy with my doctors and feel that I got the most aggressive treatment possible (mostly from reading this on here). I still wonder why it is up to me to ask about things, insist on certain things..like D3..I'm at 53 (or was..think I'm higher than that now)..but I have to insist on the bloodwork to have it checked...I take alot of D3 plus have a hell of a sun tan this summer...I want to know..I tell them I want it at 80....My DH sometimes thinks I carry things too far but dang....this is my body and I want things done right...
On another note..a friend of mine has had ovarian cancer for over 10 years..right now she is very week and probably weighs about 80 pounds...I also work with her daughter and see the pain on her face...
I always found it hard during treatment to see pain on my DH and my kids faces...I couldn't stand it....I always feel that I am the one to be the caregiver..not the other way around...having cancer just pissed me off...because they love me and it scared them..I hated that..I still do...I can stand the pain and freaking out about things..I just don't want them to be scared too...Leprechaun...you are such a wonderful support of your wife....I hope you are hanging in there and taking care of yourself too!
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Jenn..I told my husband that if he were Lebron James I would be very content to stay in the Cleveland area...with that kind of $$$...it doesn't matter where you live..you can travel any where in the world you want to go....there's alot of hatred going on in Northeast Ohio right now...its kind of ugly....it is just pro sports.. I would rather watch my kids out on a court or playing field any time...
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HI Ladies, I started my chemo back again yesterday. It will be weekly Taxol. I had a really bad allergic reaction to it. So instead of taking an hour to get done ... It took 7 hours... But it is all good. I felt ok all day and even did some yard work, dinner, paid bills. My bones are starting to ache right now, so I took a tylenol. This morning I woke up and my eyes were very swallen , they are a bit better now . Did this happen to anyone who took Taxol? Please let me know. Have a great evening ladies. 0
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Hi everyone, hope everyone still having treatment is having an SE free weekend. I restart chemo on the 29th weekly T x 12. Hoping it goes well. I hear it is way less side effects than AC and mine were not to bad with AC so hoping it can only get better. I am getting spoiled with no chemo for 45 days. The last one was on June 18th (due to surgery). I am trying to enjoy feeling good while I've got it. Does anyone know if there is any statistics showing the change of recurrence in TN? I am BRAC- and only had a left MX. Just curious. I know they will keep a watchful eye but I am so paranoid about this comming back and having to do this all over again. Its on my mind constantly.
Thanks - Jen
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Hi everyone..thought I would join in here.
NOTE TO TITAN- you knew all this b-ball talk would just be too hard for me to resist..LOL..Like waving candy in front of a baby:)) i have been thinking of you the whole time.
Okay about me..38 @ dx found lump getting out of the shower. It moved and it hurt. (7cm)
I survived dose dense chemo ACX4 Taxol X 4 each followed by a shot of neulasta. I had a left mx and than 33 rads followed by 5 boosts. I am BRCA 1. I did all this while raising 2 boys 13 and 11. I am a single Mom since 98. I was declared cancer-free in Oct 09.
In Feb 2010 I had a routine pet/ct scan which found activity in my mediasonal,supraclavcular, internal mammary and axillary lypmh nodes. Some of you maybe remember all this..anyway after a failed biospy..and plenty of weekend waits..I had sx to biopsy the internal mam and on March 15 it was official. I had mets. So back to chemo for me..
As of this time I have finished 6 cycles of Gemzar/Carboplatin. Had a pet after the 3rd cycle which showed no progression..HAPPY DANCE!!! I am now waiting to begin a "maintance" program of Gemzar every 2 weeks indefiantly..I am waiting and praying for a PARP to be released for compassinate use.
JenC- The T was much easier for me than the AC..
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Monika,
My first Taxol was given over amny hours just in case of a reaction. They also dosed me with an IV of Benedryl first. I slept through most of it. I am very suseptible to things like that. The next one I asked them to cut down the benedryl, so they cut it in half. I was still zonked so I asked them the next time to cut it in half once more, and it was perfect. The next time the nurse forgot to read my chart and gave me the full dose. Even after 4-5 hours of infusion, I still had to call someone to come pick me up because I was too sleepy to drive home.
That being said, they headed off the allergic reaction ahead of time, so I didn't get the swollen eyes. Try putting cool compresses on them, and perhaps taking OTC Benedryl.
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I am meeting up with a cyber friend who has TN BC and is going thru treatment. I'm tying to get her to come here. I keep telling her how much help everyone here has been for me. I guess sites like this are not for everyone. Wish me luck tonight.
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justpayton im sorry you are dealing with this again im praying for you im praying for all of us.
monikav i had all kinds of side effects from the Taxotere my dr said i had to take it it has got better with each one my last one is wen. hopefuly the taxol well do the same for you get better each time i didnt think i was gona get through mine and i wonted to give up i get down fore about 6 days each time sick to tummy ake swollen neropithy my blood presher drops get dierea some of my toes and finger nails are starting to come loose.i know its not the same med. maybe it will help knowing that none of this is plesent and when we just think we can't we get through it take one day at a timeit helps and keep GOD near thats what has got me through the treatments.
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HA HAH Payton..you are out of the closet..well..um..you know what I mean...anyway!!! So...I guess if it takes the "King" to get you to come over to the tn thread then so be it..welcome HOME....(unlike Lebron who left his home)...so what's the talk in Indy about Mr James....there is alot of hatred going on around here...luckly my son did not have a #23 jersey so we didn't have to burn it...he did tear up a poster he had of Lebron though..I asked if he felt better about that and he said he did..oh well...it's over now...I just wish the media would get over it and go on to something else...
Meece...the benadryl made you sleepy huh? That is what the nurses told me..but they had to practically pry me off the walls after each infusion...and I couldn't sleep....I think I got alot done around the house during chemo because I was wired the whole time...I still am...! I still can't sit still very long and am hyper as hell.
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Monika - I had a lot of body pain, bones, muscle and nerve pain with Taxol. During infusion I had terrible back pain, let me rephrase that unbearable back pain - had to take pain medication. Then I was fine for 2 days, then the pain would hit, last a few days, and just when I felt good it was time for another infusion. With that said - Taxol was easier than AC for me.
Benadryl makes me so sleepy and gives me what I call a benadryl hangover the next morning.
Titan - Money does seem to drive a lot of decisions by the big players..........it's hard to have respect for them when they do things like this.
JPayton - sorry you're having to go through this again. I'll pray and cross fingers and toes that the PARP is released soon.
Paulding - wishing you good luck.
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Monika..be sure to tell them about your swollen eyes..that shouldn't have to happen to you or anyone....they need to know of anything out of the ordinary...(but who knows what that is sometimes)...do you still have to have the Neulasta shot? I did even with taxol even though my white blood cell count was perfect....that still makes me mad..that I had to have them..I attributed my bone aches to the neulasta more than the chemo...
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yay, yay, yay Retreivermom!! whoo-hoo!!
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Hi,
I was diagnosed two years ago July. I had a mastectomy and then I received four rounds of A/C (does dense) followed by a short two week break because I got shingles. Then I received 12 weekly doses of Taxol. The A/C was awful. The Taxol was not as harsh. I was in the Beatrice Study but I did not get the Avastin. I go back to my onc every three months for a routine check in and manual exam. I was BRCA tested and do not carry the gene. Last October I found out the Adriamycin did a number on my heart so I now have a cardiologist and an oncologist. Other than my heart issues, I am doing well, even though the threat of cancer still looms in the back of my mind. I have not had reconstruction. I will wait until at three years out before considering going through another surgery.
This site has been a source of strength for me. Thanks to all who post here.
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