Calling all TNs

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  • minxie
    minxie Member Posts: 484
    edited June 2012

    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!

  • riley702
    riley702 Member Posts: 1,600
    edited June 2012

    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?

    Walk Away

  • kathyrnn
    kathyrnn Member Posts: 393
    edited June 2012

    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.

  • kellycbk
    kellycbk Member Posts: 31
    edited June 2012

    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

  • NavyMom
    NavyMom Member Posts: 1,099
    edited June 2012

    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.

  • Fighter_34
    Fighter_34 Member Posts: 834
    edited June 2012

    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.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2012

    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.   

  • TifJ
    TifJ Member Posts: 1,568
    edited June 2012

    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!!

  • NavyMom
    NavyMom Member Posts: 1,099
    edited June 2012

    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.

  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited June 2012

    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.

     

  • lisadi1963
    lisadi1963 Member Posts: 24
    edited June 2012

    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.



    Lisa

  • Fighter_34
    Fighter_34 Member Posts: 834
    edited June 2012

    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. 

  • TifJ
    TifJ Member Posts: 1,568
    edited June 2012

    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!

  • TifJ
    TifJ Member Posts: 1,568
    edited June 2012

    Has anyone heard from Blondelawyer? I see her last post was in April. I am concerned!

  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    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.

  • StayShiny
    StayShiny Member Posts: 141
    edited June 2012

    Blondelawyers blog was last updated May 22. The link is in her profile.

  • kathyrnn
    kathyrnn Member Posts: 393
    edited June 2012

    Ladies, first, I suggest we raise a toast to the researcher's this week. 3 new discoveries this week. DF is investigating the JAK2 pathway -that will hopefully lead to tx inhibit and target TN. The CBCF ( thanks, Sugar) is working on RSK2 inhibitors which have the ability to kill TN cells and their stem cells. And another company is working on the T-DM1 "smart bomb for our HER+ sisters.



    Second, I realized I missed a very important anniversary. I joined this thread 5/31/11. I want to thank you all, I can't imagine how I would have made it without your support, information and tips, (((BIG SMOOCH)))



    Anyone know why Sas-schatzi's post on the Webinar on the ACLU's pending lawsuit against gene ownership was removed by the moderators?????



    Kelly - isn't it great to have this place!



    Oh Dawn - I feel your pain (literally). Had disc surgery 3 weeks before my CA dx, but it was 't successful. It came back with a vengeance this Feb. I've lived successfully with pain, for over 25 yrs., but there is no way to describe how horrendous it is when it goes full blown. The closest I got was two statements. I told my PCP that the good thing was it made chemo look like a walk in the park. The other was when the pain specialist said this may be permanent, he asked me what I was thinking. I told him that if that was true, I was thinking I'd start rooting for the breast cancer!



    Fighter - SO happy that you are pleased with the results.



    Tifj - prayers for your cousin. It's great though, that she'll have you there to help.



    Lovely post Bernie!!



    Lisadi - Hip-Hip-Hooray!!


    *smooches tazzy's hubby*

  • Hope60
    Hope60 Member Posts: 223
    edited June 2012

    TifJ - Your cousin is in my prayers.

    Inmate - I was so happy to see your post!  Sorry you're having such a rough go with this chemo, but happy it's almost over. Hang in there!

    Fighter - Wonderful that everythings finished now, and you're happy with the results. I can only imagine it feels like a giant step back toward normal.  And just in time for summer, too.  Now go out and enjoy the new you!

    Sugar - Thanks for posting that link.  The best thing that happened to me today was reading about such promising research for TNBC.

    Everyone - hope the sun is shining wherever you are!

  • njprn
    njprn Member Posts: 39
    edited June 2012
  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2012

    Good morning Ladies

    Tifj - I expect your cousin is scared, poor girl. I know what that feels like and don't think I will ever forget it.  I feel so sad for what she is going through. You know the words Cancer Sux just doesn't seem a strong enough word anymore when I hear about people like your cousin. Sending her big warm hugs.    

    NavyMom - My onco runs late as well. Last appointment she was 1½ hrs late but she is so lovely I just allow extra time for her cause I know its going to happen.   

    BernieEllen - My thoughts and prayers go out to the men and women of D-Day and I will thank them for their service.

    Lisadi1963 - Its brilliant that surgery went so well for you and that your BS got it all out with great results.  Onwards and upwards for you now.  Big hugs.

    Tazzy - what a lovely thoughtful man.  My old fellar thinks it and doesn't say things as much but he shows me he loves me dearly in so many other ways as I do him.  You just hang onto that chap. 

    How did you do your photobucket.  I have a 2007 Hp touch computer. Can I do it with this. 

    Kathrynn - what was the pending lawsuit all about. 

    Oh I get you now with the rads 'take a deep breath'. Thats a relief.  Thanks for explaining.

    Thanks also for the smooch it got me right in my chops, just like my dogs does lol.

    I'm all for a toast to the researchers with lemonade. Sugars news was just about the best.

    Kellycbk - Welcome to our group.  We are growing rapidly but the more the merrier. You really sound like you have been put through the mill.  Hopefully our humour on here will help you feel better.  

    Melissa 119* - Welcome to the thread.  You will find a lot of helpful advice on here.  Just ask away for any questions.

    Inmate - now what date is that baby due. I have started knitting lol. Hope you feel good today. Only one to go. Woo hoo.

    Heather - how is your new job going.  Hope you like it and are meeting heaps of new friends.

    Mags20487 - Can you tell me what lymphoedema starts with. After yesterdays Taxol I keep getting cramp in my foot and toes (no numbness) and my left hand also itches like mad.  Could this be the start?

    Minxie - glad you are feeling so positive about rads and are redy to get going. I feel sure all will be well.    

    Have a good day ladies.  Keep well and keep smiling. Big hugs. Annie           

       

  • kathyrnn
    kathyrnn Member Posts: 393
    edited June 2012

    Cocker - our "genes" are the center of the lawsuit. The ACLU (American Civil Liberties Union - takes on large cases where people's civil rights are being violated). In a nutshell people with life threatening illness are donating their genes for research purposes. Myriad Labs found the Braca gene and has now patentented the test causing a monopoly. (only place you can get the testing from in the US.). People who are donating their genes for the greater good don't think it's right that a company can then own the right to total control over results from them. Myriad's (and other companies) argument is that they had to pay the cost to develop it, so they have the right to patent it. Even though this case pertains to breast CA, it has long wide range implications to all gene developed therapies. It will take YEARS, to see anything from this case and it is one that will probably ultimately end up in our Supreme Court.

  • NavyMom
    NavyMom Member Posts: 1,099
    edited June 2012

    Thanks for nice post, Bernie.

    Indeed, tip a glass for the researchers and the fine advancements that seem to be coming along.  I pray for them regularly.

    Have a great day, ladies.

  • kathyrnn
    kathyrnn Member Posts: 393
    edited June 2012

    I got an answer from the Moderators, and while I "understand", I cannot say I agree with or support the decision. This was relevant information for ALL women with breast cancer, across ALL the threads. I would respectfully ask that the Moderators examine what is defined as "spamming", or is there a thread where people can post important information that the whole community needs to be aware of?


    My question to them and their response is posted below:



    6/5 post by Sas-schatzi on TN thread

    from kathyrnn An hour ago

    May I ask a question? I'd like to know why this post was removed by the moderators. It was an informational post about an upcoming Webinar on the ACLU's current lawsuit on the patenting of genes. It was very relevant to what's currently going on. As someone who hasn't been able to afford to get my BRACA testing because of both my insurance company and Myriad's monopoly on the test, I think the information is very important. In fact I sent Sas-schatzi a PM thanking her for her post. I would like to know the reason for it's removal. Thank you.





    RE: 6/5 post by Sas-schatzi on TN thread

    from Moderators 45 minutes ago

    Add Moderators as a Friend

    Ignore Moderators

    Kathrynn,

    We understand your concern. However, as we explained to Sheila, while the message she was spreading is important and can certainly help other members, we do not allow the spamming of any one message all over the BCO boards. Sheila had posted the same message multiple times, resulting in a red flag as a spam message. There are many, many important stories that need to be heard, but one can't take precedence over so many others.

    Thank you for your understanding.

    The Mods

    In reply to:



  • Luah
    Luah Member Posts: 1,541
    edited June 2012

    njprn: Thanks for posting that article - a nice summary of most of the latest TN research. I think it's good to remind ourselves of the stats the author mentions too - a 70-75% overall "cure" rate for early stage TN, as high as 85% for those who are node negative.  

  • mags20487
    mags20487 Member Posts: 1,591
    edited June 2012

    Hi Cocker.  My lymphedema started with what is called cording and webbing under the skin just after my surgery.  When I would raise my arm above my head or stretch it out I could feel a 'cord" and see it under the skin that would pull tight just like a rope was pulling it back.  The skin would indent where the cord was also.  Then after rads It got worse again and then the arm and hand began to swell.  I noticed the swelling in the hand and it would pit when touched ( by pressing on the hand with a finger it stays indednted after you let go for awhile).  I am currently doing better with the arm swelling under control but the hand likes that fluid and just will not let go of it.  I wear a compression sleeve and glove during the day now and a compression night time garment at night.  Hate em but the swelling is aweful and I have already gotten a cellulitis infection in the arm since the swelling started.  Hope this answers your question.

    Maggie

  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    Hi CS.... It was mccrimmon (I think...wasn't??) who told me about photobucket.   Only uploaded that one pic of Tucker... think it was a jpg.   dont know if you can do with an HP Touch computer ???  Anyone ???  Sorry, not much help eh?

    Can I ask... are you a writer/journalist by trade ???

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited June 2012

    TifJ - so sorry to hear about your cousin.  I'm sure she knows how lucky she is to have you there for her. 

    I hope everyone is having a fabulous day...well, Annie did such a good job recognizing everyone that I'll just ride her coattails and say, me too!!! 

    I just got back from having a supra-clavicular node biopsied to see if there has been any changes to my hormone statuses.  At the same time, the radiogist took out 38 cc's (?) of seroma fluid from the area where my left tissue expander used to be.  Feels better, less pressure in that area. 

    I wrote about our day in London on my blog today - we saw some neat things including preparations for the queen's jubilee.  You gotta see the picture of the landscapers applying sod to the side of a building under construction.  I guess they were afraid the unfinished building would ruin the view!!!

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2012

    Mags20487 - you have answered one of my worries brilliantly - I have a cord under my left arm (breast off left side). It is tight and I have been stretching it for quite some time now to release it as my oncologist recommended.  No matter how much I stretch it, the cord just won't break like I want it to. Not sure what other exercises I can do to make it break as she said. Do you have any suggestions.

    Tazzy - No I am just a lowly Medical Typist Supervisor. Nothing fancy from this gal.  I must look back to Heathers posts then to see if I can do the pics. 

    I must tell you about an incident in the chemo room yesterday.  For the last week I said to my old fellar it might be a good idea if he had his PSA done again for his prostate as it was over a year since the last one.  "What are you talking about woman, nothing wrong with my prostate, I don't need another check so stop freaking".  Ok I said its your prostate don't come running to me if you keep peeing in the night (and he does)  and left it at that.  Went to chemo and a lady came in and started telling us about all the supplements and minerals she was taking.  Then she turned to the fellar and said you need to eat two brazil nuts per day to keep your prostate under control.  He said nothing until we got home and then said I am going to the supermarket early tomorrow morning. I said why he said to get some brazil nuts (I sniggered to myself) but true to his word he was at the supermarket the next morning early before they opened.  I was struck dumb (for once). I couldn't persuade him to have a bloody check up, his wife of 45 years almost,  but a woman he didn't even know just said brazil nuts and he was off like a rocket.  The bleeding things may not even work for the silly sod so to put it mildly his nuts and his prostate are in his hands now to sort out.lol.

    There was a snippet in the newspaper today it reads - "Sue Warren broke into a stranger's house in Westlake, Ohio, tidied it up, then left an invoice for $75.  She's done it before and is apparently serious about it as there are local ads in the papers for Sue Warren Cleaning Services"   All I can say is she don't come to my bloody house I'd give her $75 bucks to clean mine.      Annie           

  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    CS... firstly, I do not believe that you or anything you do should be classified as 'lowly'.  

    If you click on the little tree icon in the toolbar above... then you can copy the URL into the top spot.. then insert... I believe that is what I did yesterday ??  ha ha !!

  • TifJ
    TifJ Member Posts: 1,568
    edited June 2012

    Ladies- thank you all for the well wishes and prayers for my cousin.

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