Calling all TNs
Comments
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Inmate! Lovely to hear from you! Hope you heal and feel better soon. Hope everyone has a good week.
Now THIS is kitty multitasking!
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Lovelyface - could you check the spelling on "oncocytic" on you report. There is no oncocytic in any medical dictionary I checked. There is "oncocyte" and "oncolytic" and they are completely different. If the transcriber made a typo, you may not be able to get an answer.
Lisadi - your in my thoughts and prayers today.
LuvRV- glad you had a blast. Hoping Xeloda kicks a** for you. Have a question for you. Just read in the DF booklet, that they are having people getting L side rads, take a deep breath and hold it because "it narrows the heart". Did they have you do this?
Fighter - Geez....I gained 15 unneeded lbs on chemo, and even though I'm walking all the time, I'm slowly gaining more on Metformin. I guess I shouldn't be surprised. Went on the Slimfast diet for 6 weeks and gained 2 lbs!
Tifj - I'm only having yearly mammo's from the get go, and it scares the bejeezus outta me.
Cocker - when it comes to my reputation.....just think of the Mona Lisa. (heheheheheheh)
Bernie - thank you!
Hope - you're right about getting out of the house quicker. I'm starting to look at my wigs
longingly.
Tazzy - COLD and rainy here, feels like Fall. Good job with the pic.
Melissa - great post. See, you're already graduating from being a newbie.
njprn - it's a frustrating journey often. I know my facility needs a good dose of Nurse Navigators.
Stay shiny - I loved the "crystal ball". I think next time I'm faced with a decision without being given adequate info, I'll pull a Magic 8 Ball outta my purse, just to screw with them.
Inmate!!!!! - glad you're back. Learned never to ask the preg question the hard way. Please don't stay away for fear of being a "downer". As a newbie, some of the best info I got, was from some of the hard posts. It made me take my head out of the sand. In fact , what you've been thru woke me up the most. *smooch*
And ladies, feel free to ignore the following, it's just my rant of the day. Venting may keep me from maiming some Cable employee tomorrow.
Dearest Comcast Cable
Please let me tell you about your customer service.
First we need new digital adapters at my Mom's house to receive cable we're already paying for and unless we install them ourselves, you will charge to install them! (non-electronic person).
We find out you won't send them because the account is still in my deceased Father's name. (I swear to God, after telling them he was dead, they told me they had to speak to the authorized account holder. Gee, I hope you guys have some really good long distance!!!)
Ok, well let's change the account over to my Mother's name then.
To do that you have to have your "mother bring a death certificate over to her local cable office and change the account over to her name"
So to change the account I have to drag an 86 yo woman in a wheel chair, and drive 20 miles to simply change over the name on an account????
"Yes"
Comcast Cable - your term "customer service" is an oxymoron.
Sincerely,
Bite Me!!!!0 -
reoosted with permission of Dunesleeper:
An hour ago dunesleeper wrote:
Here is something for you all to pass around to the various groups you belong to:Please join us on Monday, June 25th or Tuesday, June 26th for an important free webinar: Take Back Our Genes: Ending the Patent on Breast Cancer Genes to learn about how one company's control of the "breast cancer genes" creates barriers to research and testing that could endanger your health and compromise the healthcare of hundreds of thousands of women.
In 2009, Breast Cancer Action signed on as a plaintiff in the lawsuit challenging Myriad Genetics' patents on our genes. The lawsuit, filed by the American Civil Liberties Union (ACLU) and the Public Patent Foundation, challenges the legality of the patents that grant Myriad Genetics control over the BRCA1 and BRCA2 (the "breast cancer") genes.
Myriad's monopoly prevents anyone else from so much as examining the genes, and creates barriers to scientific research and medical care relating to breast and ovarian cancer. It also limits women's ability to get second opinions when they receive ambiguous test results, which happens disproportionately to women from ethnic minorities, including African-Americans, Hispanics and Asian-Americans.
Breast Cancer Action is the only national breast cancer organization named as a plaintiff in the lawsuit. We are able to take this stand because we have no conflicts of interest: we don't take money from companies that profit from or contribute to cancer, and because our work demands that patients must always come before profits.
The webinar will be presented by BCAction's executive director Karuna Jaggar, Sandra Park, Staff Attorney for the Women's Rights Project at the ACLU and Runi Limary, breast cancer survivor and plaintiff. Topics we'll cover include:
Why BCAction opposes gene patenting and why the issue is important for women
The impact of gene patenting on underserved communities
The current status of the ACLU's lawsuit challenging the legality of patents on human genes
Real stories of women's experiences with gene patenting
How you can get involvedJoin us on Monday June 25th 3pm PDT/6pm EDT or Tuesday June 26th 10am PDT/1pm EDT for this free one-hour webinar to hear the real story about the effects of gene patents on women's health and to join us in opposing corporate control over our bodies, our genes, and our health.
Register for Monday June 25th 3pm Pacific Daylight Time/6pm Eastern Daylight Time: www3.gotomeeting.com/register/...
Register for Tuesday June 26th 10am Pacific Daylight Time/1pm Eastern Daylight Time: www3.gotomeeting.com/register/...
For your convenience, we are offering the webinar at two different times. Click on the links above to register for the time and day that works for you.
Sincerely,
Sahru Keiser
BCAction Program Associate of Education and Mobilization0 -
Michelle- I hope your cold clears up soon! The new job is going well, although I am off for summer break now! I will start again in Aug. Thanks for asking! My thoughts will be with you during this next round of treatment- I am praying Xeloda kicks ass!!
Kathrynn- I am thinking about asking either my MO or gyno if they will recommend 6 month mammos for a little longer. On the other hand- am I exposing myself to more testing than necessary?
Inmate- I am so happy to see you posting! It really sucks that this chemo is so hard on you and I hope and pray you begin to feel better soon after the last one and that it has taken care of the FC!!
I ask that you all please keep my cousin in your thoughts next week. She will be having a uni-mx on the 14th. She is stage 1 no nodes triple positive. I will be going to Nebraska to help take care of her and her family for awhile. She came and helped me after my mx. Why oh why can't this disease be stopped?
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I really need to check on, a few times a day!
Welcome newbies!
Melissa - hair loss hits you like you can't imagine. I've done it twice and it slayed me both times. I think because it's the first outward sign that you are sick.
Inmate - glad you could feel our love.
Annie - it's a soft market - I'm sure it will not sell, by the time you visit!
I wore my boobs today - I never do, but the dress needed them. I felt like a freaking drag queen!
I away from the kids - having some wine, looking at the ocean. Life is good!0 -
Kathyrnn - nope, no breath-holding with my version of radiation. I believe Dr. Harris adapts the radiation protocol to each specific person's situation. For me, I had to undergo surgery to have my TEs removed and then he used electron beam technology (I think I have that right) to keep the rads shallow and pointed away from my heart and lungs. I got the "normal" proton rads for my supraclavical area.
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A friend who works at The Canadian Breast Cancer Foundation (CBCF) sent me this news release today. Looks promising.Breaking News: CBCF Funds Game-Changing Discovery in Triple-Negative Breast Cancer0
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Just in case you are wondering if that little rat is trying to get his paws again, she is. Her feet are going ten to the dozen trying to nip his paws and his tail. So I can see her ending up like this one day cause my big boy has an expression on his face just like this.
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Sugar: Thanks for that, sounds really promising, I'll have to dig up the report from the journal, I know UBC is doing amazing research into TN.
Inmate: Wow, your post was the best thing that happened to me today. So good to hear you're hanging in with the halaven.
Njrpn: Yes, definitely get an expert RO opinion. They may alleviate your concerns. My tumour was very deep, but the RO actually showed me the plan for the rad beams on the computer, and how it would miss my heart. He's an acclaimed RO and researcher, but I bet that any leading cancer centre can deal with the issue effectively. As for access to off-protocol drugs, I recall raising AC followed by 12 weekly taxol with my onc, who told me it hadn't been done in her practice...lol... she had to take it up the line, but in the end there was no problem with me getting it. 'Course, here we don't have to fight with insurance carriers...
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Inmate, I wish I could have seen that woman's face. You have been on my mind and I hope you feel better soon.
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Inmate...so glad to "see" you again..you are not a downer...that is what we are here for...vent, rant, complain...whatever you want to call it we understand better than anyone else ever could. You are a strong and beautiful woman with a zest for LIFE and that is what we all love about you. If you did not come on we worry about you and wonder what is up. We will take the good the bad and the ugly. If we did not want to hear it we would not be here!! We all came here for support to get thru this crap and we shall stick together.
I gave in today and ate fast food for the first time in many many months. That BK double cheeseburger was pretty tasty not gonna lie. At home now washing it down with and OLD Vine Zin....yummm!
Trying to decide which recon is right for me and think I am going to go with the diep with a lymph node transfer as well. the Lymphedema in my left arm and hand is ridiculous and does not want to go away after 3 1/2 weeks of wrapping so I am willing to try it.
night to all and LUVRVING...welcome back and so glad you had so much fun...the cold part sucks though! thinking of you often and wishing you well on the new meds
Maggie
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Ok..I just checked on this board like 5 mins ago and I thought it was up to date..dang..i wish we could go back a few pages when we are posting so we don't have to remember everything..chemo brains or not..it is hard ...I want to include everyone!
Lisa..hope everything went well today!
Caroline...big decision for you....you will make the right choice....just research and do what is best for you...I wish I could help more but ultimately the decision is yours..and yours alone...I had a lumpectomy and I do know..that if any of my girls act up again..they are GONE.
Inmate..glad to hear from you and please don't be afraid to post dang it...it is what it is...we all have bc....and we all know now that it really isn't just a "bump" in the road for some of us...we all need to realize that....it is called facing reality..that poor girl that made the comment on your pregnancy..well..she probably won't be making comments like that again...
Thanks Luah for your info....it's always good to hear good stuff.
I have a friend that is recently diagnosed and even though she is estrogen positive..things now are so diffferent...she is totally amazed about how each and everyone's cancer is totally different...we are all tn but even so treatments are different based on so many different things
Cocker..you will not leave here,.no way, no how...I'm starting to call the dh..old fellar...I think he kinda likes it...
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Sciatica---
Ruth, so sorry your in pain. Mine just started acting up, so I thought I'd come search for it here. I find that I easily injure myself, and when I do, it takes a month to recover.
A couple months ago I tripped over something in my garage and landed on my shoulder. I had acute pain for a month before it disappeared. I had this same pain before, but this time it took longer to heal. I also saw my PCP and all was well.
This time - and this is silly - I stretched a funny way changing my shoes at the airport, and I now have unbelievable sciatic pain. And I do mean unbelievable. I won't go to the Dr til after my daughter's 21st birthday tomorrow (God forbid it is something terrible, I don't want her birthday to be a reminder of something bad) and have been taking leftover mastectomy meds to manage the pain. I have never experienced pain like this. It definitely isn't in my bones, and I had been more active than usual the past two weekends. It is so terrible that every ache or pain makes me think it is cancer somewhere else.
We can all be thankful that the poisonous chemo 'cured' us, but there is definitely danger lurking ahead. I was never sick a day in my life before BC, and this is a lot to get used to.
Ruth, the pain I'm experiencing isn't something I could tolerate for another week, much less forever. I hope you have found some comfort.
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Good Morning Ladies.
No.5 is now done with no problems yet!
Dormac - Only one more to go and lucky with side effects. Woo hoo.
Caroline71 - Our BernieEllen comes from Ireland. She will have lots of advice for you with a great sense of humour. Why does your chemo take 7 hours, do they infuse really slowly. On the double mastectomy given my chance over again I would have had both breast off. I now have to consider it and it would have saved time in the long run but its a bgt decision for you to make. Thinking of you.
LuvRVing - Glad you had a great trip but sorry you came home with a cold, that the bloody airplane aircons for you. Looking forward to seeing Paris through your eyes. Good luck with the Xeloda.
Fighter34 - I too was more worried about losing my hair than the big girl because I felt it would convey to the world what I had. I'm still a bit self conscious when I go out and notice anyone looking at me.
Tifj - I know how you feel about the yearly mammo because a year is a long time and anything can happen but they must be pretty confident that all will be ok with you to wait a year. Sending you lots of love on your trepidation. Will send heaps of prayers and love to your cousin that all goes well.
Melissa - Welcome to our happy thread. I had AC x 4 and now going through Taxol x 12 (God it feels great to help someone for a change instead of the other way round). Hope is right Taxol is easier than than AC thank goodness and you will get through this. I had a port because my veins hide. The port is a little sore at first but not for long and I'm glad I have it. Hope is right it is doable. I'm a great testiment to that as I worried myself sick. You will fly through it.
With regards to hair. I wish I had seen the hats with the halo on them before I brought my wig. They seem lighter and more like my original hair colour which is light golden than the dark wig I have as that was the nearest colour that the wig lady had but it doesn't feel like me and I hate wearing it. (Wig lady what an awful name I have given her. Just cannot remember her name lol)
Tazzy -Gorgeous dog and you have the added pleasure of giving it back when you want to or if it beats the cat up. I'm glad I put a smile on your face. I genuinly (can't even spell now) believe laughing gets me through even when I feel at my worst and it does hide a lot of my worrries.
Fighter34 - I want some liposuction too. Right around my middle, a little face lift to get rid of wrinkles and may be even a bum lift with anything else they want to throw in lol.
Stayshiny - I have a family history of breast and ovarian cancer. Still waiting to see if I have the gene. My onco says if I have it then I have a 60 to 80% chance of getting BC in the remaining girl or ovarian cancer. Woopdidoo. Scary thought and something to look forward to.
BernieEllen - really great joke. Thanks.
Inmate - at long last. God I was getting worried. Welcome back. I really hate your AWOL's, you nearly put years on me. You will never be a downer for us. We are here for the good or the bad and its something we will all have to go through at some stage. Only one more treatment, yay. Bloody great. My admiration for you knows no bounds.
Riley702 - just love the saying "hello to the neighbours" bit. So bloody funny.
Kathrynn - Oh shit, narrowing around the heart. My rads is on the left side. Mind you, probably narrowed by now anyway with all the 'much needed!!!' fags. Yea Mona. You can just tell by her face she has something to hide lol.
Karen - you just keep that soft market going. Mind you though if its giving you stress may be its time for it to go. You don't need anymore stress and we can always cuddle more lambs or play with the wii. Hope you can post a pic of you looking like a drag queen that would be so funny. Wine and ocean. Sounds so great that even I could take up drinking. Lucky girl. (Notice I'm getting better. Normally I would have put lucky sod here lol).
Titan - the old fellar doesn't stand much chance really. It's either that or I call him the poor sod.
Sugar77 - reading your article was the best thing that happened to me today along with Inmate signing in. Absolutely great news. I just couldn't see though if there is a trial going to happen or how long before we see this miracle cure. That is just wonderful news.
Now dare I start another subject with less side effects.
Just wondering if there was a tried and true psychic (don't know of one) who could really predict the future would you now want to know yours.
Have a good day ladies. You will be so tired after reading this lot but I just can't seem to stop talking. Always had that trouble WTF. Annie
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Oh God look how long it is. Please just skim through it you don't wanna chat to me. Annie
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Hey all, and hey Inmate, glad to hear your update and that you're almost done!!!
I got measured for rads today. Funny, I was last in that building 3 1/2 years ago and nothing has changed - they even still have the same crappy art on the walls
if all goes well I should be starting treatment next week! Lets get this show on the road!Tomorrow I travel to NC to consult a TN specialist and see if she thinks there is any more I can do to keep this FC away. Will re-post anything of interest!
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Wow, Sugar, that sounds fantastic! I want to hear this all over the news soon.
Dawn, I had sciatica about 15 yrs ago. I know, you turn just the teensiest bit wrong and BAM excrutiating pain. It was horrible. Mine "progressed" to ruptured disk and the surgery fixed it good. Such a relief. At the time, I was freaked out because I'd never had surgery and didn't want the first one to be on my spine. Turned out to be practice for the FBC. Ha! I can do anything now.
Cocker - Wow! Great minds like the same LOLcats! See?
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Minxie - good to see you, been fretting because we hadn't heard from you.
Mags **applause**
Cocker - I must have explained that badly. One of the techniques they mentioned for L rads, was to have the patient take a deep breath and hold it while they received the rad dose. The deep breath compresses and narrows the heart, causing less chance of the rads affecting it.0 -
Evening everyone! I just joined the group a week or so ago and am having a tough time keeping up!!!
Would like to say I enjoy seeing what everyone has to say on all subjects, it makes me feel as if I am not just here to talk to others with cancer but to friends who have a variety of likes/dislikes. Keep it up.
Melissa-- I had the same treatment you will be starting and did not have a port- am paying for it now as I get blood drawn very 4-6months and had to have a CT and MRI with contrast last weeky. It was very difficult to get these done with my weak veins. I truly hope you do better!!! On top of all the treatments I also had to get fluids regularly during the first 2 months because I was so sick. I don't want to change your mind about no port but do be open to it if you have difficulties. Thankfully I had a wonderful chemo nurse who spent extra time with me each week until we got the best vein we could. Stay strong--- no matter what you do you'll make it through.
Hope everyone has a restful night and good thoughts to all of you.
Kelly
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Having a sleepless night tonight. Good excuse to get caught up on this thread. Glad to hear that you are home, Luv. And good to hear from you MIA girls. Sugar, you made my night by posting that new research on TN. Theres gotta be something out there to help us, I pray this is it.
Chat with you all later in the day.
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NavyMom-Me too. I went to the BS about a month ago and she basically did nothing but feel me up and said I will see you in another six months. What a waste of a co-pay. She's really good but there is nothing more we need to discuss. I am really considering after my next appt with her to only see her in the future if I need her.
Also ladies I am all done, exchange, nipples, and tattooing complete. I look great I almost cried once I saw myself. I just knew I would look like a freak and I don't I look GREAT! A Double-MX is a hard decision to make. I always wondered what will I look like. I just wish I could have seen more completed pictures it would have taken some of the fear away in the beginning. Also I really wish I would have created a photo side of this process to share with newbies who are faced with tough decision. Women are often so overwhelmed with having BC that they overlook asking some of these tough questions of how I will look etc...
Thanks for listening I just felt I needed to say this.
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Fighter 34 - like NavyMom I can't sleep tonight either. Finished all my typing so thought I would reply to your post.
I am so pleased that you think you may only need to see your BS when you need her.
Its terrific news that you are now the "new you" and looking and feeling so great. Must be wonderful to have everything looking so good. I feel awful when I look in the mirror. Great big scar, one girl left, brown face but pearly white head. Its enough to scare the cat lol. My BS said reconstruction wasn't an option for me so I guess that would be because of the aggressive nature or otherwise he thought I was too old lol. So its wonderful that you are really happy with your new look. Now is the time to put all those wonderful plans in action and do something great for yourself. Hard to believe on looking at your beautiful picture you could ever look like a freak so keep looking in the mirror and enjoying what you see.
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Cocker- Thank you for the prayers for my cousin. She is so scared right now.
Good to hear from you Minxie! Hope all goes well with the rads!
Fighter- that's exactly what happens at my BS appts. A quick feel up and I'm done. It takes me 50 minutes to get there and costs $30. She wants to keep the every 4 month check until I hit 3 years. I kinda feel like it's a waste of time, but if something should happen in my left breast she might be able to find it better than I.
Thanks for the info Sugar!
Now, to find something to entertain the kids today!! There is nothing to do in this little town!!
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Good morning ladies,
Fighter, I am seeing my BS every six months too. I love this Dr. When she gave me the news that lump was BC, she had her arm around me while she said it and gave me a long hug before I left the office. Also supplied me with her cell phone number if i needed anything. Plus she gives the most thorough breast(foob) exam. She really digs around in my armpits, up and down my sternum and along the collarbones and my neck. So I will keep going to her every six months..Pain in the arse because she always runs late, but I always leave happy after a good feel up and nice conversation. I am on a yearly check up with the PS now and every six months with the onc. Is it possible that life is returning to ...dare I say it.....NORMAL?? whatever the heck that is.
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Give a thought, say a prayer or thank you of the men and women of D-Day today. THANK YOU FOR YOUR SERVICE!!!
June 6, 1944, 160,000 Allied troops landed along a 50-mile stretch of heavily-fortified French coastline to fight Nazi Germany on the beaches of Normandy, France. General Dwight D. Eisenhower called the operation a crusade in which "we will accept nothing less than full victory." More than 5,000 Ships and 13,000 aircraft supported the D-Day invasion, and by day's end on June 6, the Allies gained a foot- hold in Normandy. The D-Day cost was high -more than 9,000 Allied Soldiers were killed or wounded -- but more than 100,000 Soldiers began the march across Europe to defeat Hitler.
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Good morning my friends!
Surgery went very well yesterday. I had a lumpectomy on my right breast. My BS got all of the tumor that was left after chemo and did the sentinel node removal and the initial path came back with no cancer! Yippie! I start rads in about 3 or 4 weeks.
Thanks for all the prayers everyone.
Lisa0 -
Cocker-I feel you it does take a lot for us to accept our new bodies. (((Hugs)))
The thing is that my ONC specializes in breast cancers and I don't have Real Breast left so to speak so everytime I see him (every 3 months) he does a breast exam as well, and a blood draw. So I was like why all the repeat. Now you ladies are making me feel gulity so I guess I will continue with the program.
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Fighter- Now that I think about it I see my MO every 3 months and he does a breast exam too. Maybe I could see the BS less? I don't know- I guess I just do what they tell me to! LOL!
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Has anyone heard from Blondelawyer? I see her last post was in April. I am concerned!
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When I was having a particularly 'ugly, fat' day (and I haven't even had surgery yet) my husband looked at me and said:
"IN CASE YOU NEED REMINDING... YOU ARE BEAUTIFUL".
And Ladies... that goes out to all of you.
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