Calling all TNs

Titan ~ we can get articles posted to our profile page based on our interests (such as "TNBC", "clinical trials", etc), which are selected according to the information we post in our personal diagnosis and treatment areas. These are from BCO - more up-to-date and reliable, since this website uses breast cancer experts to input and filter reports from all the various studies. I believe it is the same articles we see highlighted in the "Breaking News" box on the left side of the discussion page. 

Since none of us are medical doctors, much less oncologists, we really aren't qualified to interpret research studies. In the medical and healthcare fields there is the concept of "scope of practice", meaning you work within the range of your training/knowledge. To go beyond that "scope" is irresponsible and unethical. Of course anyone here who posts this type of info is only doing it with the hope of helping others...after going through the hell of cancer treatment, how could we not be compassionate? But...we really need to leave the medical/technical info to the experts.

The beauty of these discussion groups is in the sharing of our experiences. The doctor can tell you that AC will make your hair fall out, and that Taxol might make your feet numb, but WE can tell each other how we coped with that bald head..."wig, scarf or BOLD?...or those wonky feet..."why are my toes on fire?"...or that greatest mystery of all..."where did my eyelashes go? they came back two weeks ago, and now their gone again"???!!! It's reassuring and comforting to talk to someone who has already been through it. As is often said on these forums...someone who "gets it".

Plus, doctor-speak. Not always easy to translate, and many times misunderstood. Just a while back here, someone thought the doc or nurse told her to "get your affairs in order", but later found out they meant to "get through treatment and then get on with your life" Whew - that had to cause some major hyperventilation. Doctor-speak. I worked with pathologists everyday. They really like the word "unremarkable" when describing surgical specimens during gross examination and dictation. ("Unremarkable" means normal, not diseased or abnormal.) Now wouldn't it make more sense to just say "looks healthy and normal"? Um, No...not in pathologist-speak. Our young pathologist was doing a gross exam of a surgical specimen from a woman, and dictated that it was "unremarkable". I told him that no woman wanted to hear that she was "unremarkable". He came back with "she sure wants to hear that from this department!"  Yeah - he had that right! Oh the fun we had in the pathology lab, affectionately known as the "Parts Dept". 

 ~ Shar       (hey, blame it on the formaldehyde!         )

P.S. Titan ~ Thank You for starting this thread - it helped me to get through those toughest years. I reached 2 years out from final treatment on April 6th. Now I'm heading for the 3 yrs since dx goal, in August. I plan on getting there as "unremarkably" as I can!

Spica, I just wanted to say congratulations on being two years out from your last treatment!  I love seeing people hit milestones and posting about them.

Just popping in here to say that we think we're all feeling frustrated after
reading this back and forth ladies. Please, it's time to  move forward, be open and
supportive.

Also, just a reminder that if you do not agree with a certain post or poster, and/or her/his opinions and comments here, feel free to use our Block Member feature, or simply choose to
not read her/his post. 

Thank you each for your cooperation.

The Mods

out of hospital, feeling better. Spring is in the air. I don't have much to add other than good luck and positive thoughts to those in chemo and rads.

Healing thoughts to those with hard feelings. No need to justify position, let's all move forward as mods suggested. Thank you mods for all you do.

It's a great forum for information and friendships. Wouldn't want to see it any other way. Hoppy Easter!

Life's too short and too precious to waste time or energy on all this drama.  Glad to see you're out of the hospital bluebird! We're finally getting some spring weather here in the Midwest - hope everyone gets a chance to get out and enjoy it! Hoping everyone a very Happy Easter! 

ally: regarding the query related to radiation..even i had the same question.

i asked my radiation oncologist that why did i need radiation after completion of 8 dose dense chemos. The cancer cells which would have survived so many chemos will they die with rads or are they still near the tumor area or breast?!! She gave me a new information. She mentioned that when surgery is done, chemo therapy drugs don't reach the area of surgery too well. They travel all around the body but less around that area. Hence radiation is required there as a local treatment.

just wanted to share this new piece of information with all of u.

Jianchi and Simple...hope rads are going on smoothly. I have just 3 more to go. Fatigue was high initially and with time it came down or maybe i learnt how to live with it... 

I guess once we have dealt with a diagnosis like TNBC and Chemo, a lot many other things seem like a breeze.

wishing everybody good health...i hope we keep chatting and i wish each one of us ..ripe old age!!

bluebird, glad you are out of the hospital and hoping you are feeling better. Wishing we could all get along with each other, I have always come here for the support and understanding that only we can share. We are sisters and sometimes there will be disagreements, but please let us support each other through this journey. Sometimes I start to read something and if it's not something I want to hear-I move on to the next post. Simple. I am grateful for all the encouraging posts and sympathize with the others. 

Thank you everyone for helping me get through this with the warmth and knowledge that everyone shares.

Bluebird, sending loving warm thoughts your way

Love you right back, Annie.

Bluebird glad to hear you are out of hospital and feeling better. There is no better time than spring to put a smile on our face and a "spring" in our steps. 

Cat just wondering out you are getting on.  Hope your treatment is not to hard on you. Still deep in your pocket and hoping you are feeling better.

A Happy Easter to you all who celebrate it.  There's nothing like chocolate to make you smile, so enjoy plenty of it.

Cat my heart goes out to you.  When I was having chemo the steroids kept me awake all night and as I was working from home I would type all night but instead of catching up on sleep the next day I would again type all day so that when the true side effects of chemo struck me about three days after each infusion,  I was sleep deprived as I hadn't caught up on the night I had missed. Then I would get that heavy, sickly, tired, fluey  feeling because I hadn't caught up which I put down to chemo but perhaps it was because I needed sleep. At our surgery the doc's give information sheets called "Sleep Hygiene" which is designed to help those people who are lacking in sleep.  Would your local doctors have anything like that, that you could try.  Admittedly a lot of these people are not having chemo but there might be something in there that could help you.  Or perhaps a warm drink, reading for a while until you feel you could drop off, or just clearing your mind as much as you can.  People used to say to me, make out you have won the lottery (yea right) and you are about to spend it or imagine yourself on a deserted warm beach with only the lapping of the waves under a blue sky.  Sometimes it helped.  Or perhaps your doc could provide you with some sort of medication that won't interact with the chemo.  I do hope you can find something because it is so hard to cope without sleep when you are having chemo.  Thinking of you and sending warm hugs.     

PS I won't be anywhere else but in your pocket as always.

Inspired I think we need to call a truce.  I believe we have exhausted the subject to death and both have had our say.  You have so many positive, helpful things you can offer the ladies on here and so do I.  We are not done yet.  Lets try and get the thread back to where it used to be.   

mmmmmmm perhaps a bit weak

I got an ambien from my PCP for the steroid nights and it helps, I can sleep now.