Calling all TNs
Comments
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Blondelawyers blog was last updated May 22. The link is in her profile.
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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*0 -
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!
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Very interesting article on recent research and treatments for TNBC
http://www.cancernetwork.com/conference-reports/mbcc2012/content/article/10165/2045206
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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
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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.
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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.
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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
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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
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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.
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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
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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 ???
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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!!!
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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
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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 !!
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Ladies- thank you all for the well wishes and prayers for my cousin.
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Annie - I just read your post about the old fellar's "brazils." Well, I was drinking a glass of water, and I ended up spitting it all over my computer monitor....you are just so hilarious!!!! I always look forward to seeing what you will say next! Thanks for the laugh.
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CS - I have just reread your post again... no wonder TifJ splurted water all over the comp. Your talents are wasted CS typing up med. reports. I am so glad you are here and keep us smiling and laughing.
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Cocker...I had to go to physical therapy with a lymphedema specialist to get my cords to break. stretching does help for sure with range of motion. She also had me doing some exercises to help to get the arms back after my surgery last year. you can also do a technique called MLD. I am just learning how to do it on my own as I must do it now at least 2 x a day to try to control the LE. I think there are videos on youtube on how to do the MLD. I did have a cord in my hand pop today when I was applying lotion before putting on my sleeve. It is a weird sensation when it does it. kinda gross really. With 11 nodes out you may want to see if there is an LE therapist in your area to get tips to prevent it and also measure you for a sleeve for when you fly or exercise. I only just understood that I should have been wearing it daily. Are you getting RADS too? If so get fitted and wear it everday for that too. Every little bit of prevention helps for sure. Wish I would have paid more attention to the risks but I got complacent and just thought it would not happen to me--derp I never thought cancer would happen to me either and yet here we are---keep smiling!
Maggie
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Hey..I live near Westlake, Ohio!
Cocker...ha ha...I know where you are coming from..you can talk to the old fellar about stuff and then they hear it from someone else and all of a sudden it is the thing to do...happens with kids too..it's like..I have said this all along and they look at you like you are a zombie or something..so freaking frustrating.
Remember I told you guys about my friends daughter with TN..she is back in the hospital with pneumonia....prayers and/or good thoughts are welcome....
and for our Jenn too
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Mags - really great information about lymphadema, thank you.
LuvRV - the blog was wonderful. As I was reading it, the Mayor of London was on Letterman, and one of the things he mentioned was the HOHO's
Hope - please pass the paper towels so I can clean up the mess here *big grin*
Cocker - apparently we have to use the word "nuts" to get a man's attention, heheheheh (don't know if it's the same over there but "nuts" is slang for testicles over here)
Titan - prayers for Jenn and your friend's daughter.
Now looking for Clowngirl, hope you're doing well.
Just came home from taking my friend out for her birthday surprise. Went to see Il Divo. If you've never heard of them the only way I can describe them is that I hope that they are what "a chorus of heavenly angels" sounds like.0 -
Good Evening Ladies. Hope you had a good day.
Hope60 - Hope you didn't do any damage to your PC with all that water lol.
Lisa - hope you are doing ok today and are not too sore. Thinking of you and sending warm hugs.
Fighter34 - don't feel guilty about not seeing your BS so much. This only means you are more confident about moving on now and leaving BC behind to start a normal life Woo hoo. (Just don't leave the thread). I am nowhere near out of the woods yet so I am still happy to see mine and like Tifj I have put my confidence in them and they tell me what to do. But I hope we are not too far away from beginning to feel like you do and we too will be ready to move on back into normal life when the time comes
Njprn - That interview was on our TV with full coverage. It was very interesting. Would have recorded it if I had been quick enough but wasn't expecting it.
Mags - you have been a great help with the cord and lymphoedema. I will ring the hospital tomorrow in Taupo because I know they do the sleaves as I am having rads. I think they might also do the physiotherapy as well or if not they will have an idea on the correct exercises. So thanks that was really helpful to me.
Tifj and Titan - Many many hugs for your cousin, friend and Jenn3 who are having a rough time. Many many prayers also. My heart goes out to them all. Your cousin is lucky that she has you to hold her hand Tifj because you know what she is going through. Such a horrible time for them. Cancer Sux. Just be sure when you are looking after your cousin you have a bit of rest time as well as it might be very stressful for you.
Titan - ok fess up. Is that you parading as that cleaner or do you have her to clean yours. Wish she would do mine. completely knackered me last week cleaning all those bloody windows but I'm glad I did them. It was almost like a spring clean at the beginning of winter.
Yep men are funny about their bits aye. My god we go through periods, period pain, childbirth, hysterectomy's, cancer and every other darn thing. They get two fingers up their botts, told to cough and its all over. Bloody typical.
Kathrynn - yep testicles are called nuts here too. In fact men say nuts more than testicles. Its almost like they are fearful of saying the correct word. Sookie babies.
Did anyone see my post on whether they would like to be told by a psychic about their future. Part of me would like to now I have BC. I think I would want to cram everything in, in that time just in case rather than say I will do it next year and don't. I would want to do something completely outrageous like do a bungy jump, get two red rose tattoo's, one on each buttock, strip naked and run down the lake front shouting Jeronimo, and singing catch me if you caaaan just to see if I could evade prison or even so they would have something to say about me at my funeral (mind you I bet they could dig up something now lol). Just a thought ladies, don't answer if it makes you uncomfortable.
Have a great evening and keep free of pain. Laugh like there is no tomorrow its good for you providing you are not sitting at the computer. Love to you all. Annie
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Annie - you are so very funny! Now, since I know I have MBC (and don't need a psychic to tell me), I intend to make a list of a few things I've wanted to do. One of them is to make it to Australia and New Zealand, so maybe I'll come and find you one of these day!
Thanks, Kathyrnn - I'm hoping to write about our day at Le Louvre sometime today. I need to get all my thoughts out before they're vaporized by Xeloda!!!
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Annie - My computer is fine, thanks. But I think I'll have to stop drinking and reading. Just in case you happen to post
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gTitan, I just joined and wanted to document my "situation!" I was diagnosed in Dec. of 2010 with adenocarcinoma in the right axillary lymph nodes. My official diagnosis is occult primary breast cancer that is triple negative. I don't follow the demographics for tn at all...I was 60 when diagnosed and post-menopausal.
I had 3 mos., once a week, of Taxol, then 3 mos, once every 3 weeks of FAC. I had surgery Aug. 2011 and only one lymph node of 31 had residual disease and it was only .7 mm. At surgery, the plastic surgeon removed the old breast implant and replaced it with a tissue expander.
I had 5 weeks of radiation and find that it truly is "the gift that keeps on giving.." I still have sharp little pangs...electric jolts, I call them.
My reconstructive surgery was Feb. 20, 2012 and at that time, the tissue expander was removed and replaced with a permanent implant. The old implant was removed from the left breast and both breasts received a mastopexy (lift).
I was hospitalized for 3 days due to a staph infection afterwards, but after a month of antibiotics, all is now good.
My radiated breast definitely doesn't "match" the other one, but my surgeon thinks he can improve things in about 6 months. We'll see...not so sure I want to go through anymore surgery that isn't absolutely necessary!
I have an ultrasound scheduled for Monday am due to a couple of little pea sized nodules on the main scar under my arm. There is also a pretty tender spot they are going to check, as well. I've had several similar scares...LFT's (liver enzyme) numbers are elevated and they did an ultrasound to see if they could see anything in my liver...came back clean as a whistle! I've had two bone scans since Jan. 2012 and both have been clean.
I've read that tn most often returns in soft tissue in distant organs rather than in the bones, as it often does in regular breast cancer.
Wish me luck Monday!
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Tazzy- it was Hope who spit on her computer! Good thing I didn't have a mouthful of anything or I would have too!!
Luv- Love the new picture!!
Shiny- thanks for info on Blondelawyers blog. She posted an entry today.
Bernie- keep the jokes coming- even my husband is enjoying them!
Cocker- I don't think I would want to know. If my expiration date was in the near future, I think it would be stressful trying to cram everything I've ever wanted to do in that short time frame! The tatoos on the rear sound like a good idea, but if I ran around naked I run the risk of killing someone else by heart attack from looking at my rose covered, lumpy butt!!
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Cocker - I saw your post about the psychic and was going to respond then but figured I should give it a bit of thought first - luckily, I had lots of time to ponder it while sitting on the can all night (D train)!
I am a very logical and practical person so I don't think anyone could ever convince me that a true psychic existed who could foretell the future - so, putting that aside, if I had the option of knowing the future, would I want to? Absolutely and without any hesitation! That would let me make the most of what time I had left and not waste that precious commodity on people or things that were unimportant to me. Perhaps I feel this way because of my age (61) but I have heard of way too many people who put things off and never got there - my younger sister being the most emotional example for me. Also, last year, 6 months before he was due to retire, my DH (of 38 years) had a heart attack - although he had 100% blockage of an artery, they were able to do stents immediately and he is fine today but I could have lost him that day! As soon as he got his 1 year "all clear", I received my diagnosis. When I am finished with my treatments, I have a "bucket list" I'm going to start checking off - it doesn't involve anything too outlandish but visiting some different places, etc.Doreen
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TifJ... blaming that on chemo brain too (like everything else I get mixed up with).
Cocker.... I have also learnt not to drink/have a mouthful of liquid whilst reading your posts... you should definitely write an article on 'life with DH' 'Or Your daily life' or something along those lines. Way too funny.
Oh! and I wouldn't want to know my expiry date. Apart from the fact that if I knew I think it would put me into such a tailspin I'd be running around like a blue arsed fly not actually doing anything on my Bucket List. Nope, live each day as if it were your last, one day you'll be right !! Would be nice to actually have the time and money to be able to do that.
Dworley.. thoughts and hugs with you for Monday.
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Good morning Ladies,
Tifj and Titan.....my thoughts go out to your loved ones. I know that you both are a great support.
CS....you absolutely crack me up. I do so wish that we could all meet in person. What a loud laughing group we would be.
Well, tomorrow is my last chemo and guess what? I am losing my hair! Yep. Just as I near the end of my 2 + year journey I get the summer reminder of being bald. Oh for f**k sake! Thank goodness I didn't make that hair appointment to get my new style. What a waste of time and money that would be.
The best thing that happened to me today: I had someone ask to look at one of my pieces of jewelry. Yeah! Especially since it happens to be a lovely necklace with a tahitian pearl and rough grey diamonds. I am very excited to start concentrating on something other than my next chemo appointment. New normal, here I come!
Have a wonderful day! Love to you all!
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Hi all, Sorry I jumped onto the board without introducing myself. My name is Nance and I will be 54 the 21st. I was dx in Jan with TNBC and was scheduled for a lx in Feb. Before doing that I contacted Dana Faber and landed up in a neoadjuvent clinical trial which included Taxol, Cisplatin and RAD001 (+/-placebo). I finished that 3 weeks ago and feel good (surprising how good you feel when you stop pumping yourself with chemo!!) I will have my lx next Tues 6/12 and A/C in July. Path report will confirm rads but so far it's on the to do list. Asking for positive energy as I enter the next phase.... Glad to have found this source of info and support!! Best to each and every one of you !!!!
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Dworley, welcome, and hope all goes well for you.
Inmate: You sound great! Here's to your new normal.
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