Calling all TNs

Anonymous

MBJ- I hate that article from John's Hopkins and I'm not even sure it's legit ( I think the OMG thread discussed that today). While some of it sounds plausible, a great deal of it also sounds like snake oil.

Reader Beware IMO -- I need to trust the source, and a possibly bogus article from a highly respected institute sent over the internet doesn't mean someone didn't create it under an assumed ID.

This is the part that really strikes me as decidedly unscientific:

15. Cancer is a disease of the mind, body, and spirit.
    A proactive and positive spirit will help the cancer warrior be a survivor. Anger, un-forgiveness and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life. 

I've seen that article before and, if I took everything it was saying to heart I think I'd rather just jump off a bridge than turn my life upside down doing all they "suggest".

F*ck it.

Titan

The article NOT legit..google John's Hopkins and plastic water bottles and you will find their letter concerning this.

There are too many urban myths going around (and not all of the involve cancer)...be careful what you read out there!

Anonymous

 John's Hopkins Cancer Update is BOGUS!

Here's the rebuttal link:

http://www.hopkinsmedicine.org/kimmel_cancer_center/news_events/featured/cancer_update_email_it_is_a_hoax.html

cc4npg

beccad:  Yay!  Glad you're done with that!  Now on to recovery...

riley702

Thanks, Heidi and Titan! I was thinking, "How in the world would they even test the hypothesis that we all get cancer 6-10 times in our lives, but in undetectable levels, and we fight it off on our own"? And I've heard the 'milk makes mucus' thing rebutted before, so that sounded off, too.

MonikaV

Hi Girls, checking in. Hope everyone is doing ok. I am feeling a little tired today. I had my ONC appt today and she said I am still clear . Yay! I am glad. I did not exercised today, ughhhhhhh! I wander if I am anxious because my surgery on Friday? The Doctor tells me the exchange surgery is a piece of cake, why am i feeling down? I should be jumping for joy, right? Could I be scared and not know it? Wow , so many questions??????????????????????? You ladies have an awesome day.

mitymuffin

MBJ,  I love you and love your posts, and your outlook, but the "John Hopkins" email is a hoax. Please check it out on Snopes, and other hoax buster sights.  Also, the Johns Hopkins website says it is a hoax.

http://www.hopkinsmedicine.org/kimmel_cancer_center/news_events/featured/cancer_update_email_it_is_a_hoax.html

Kymn

I know it kind of sounds like we had a choice in this and that its all up to us if we get over it. I dont know about that. If i had a choice I wouldnt be here. Look at Bif naked she was a vegietarian and then that lady from GMA wow she is so positive all the time and she got it. We all have to be so careful not to fall for everything I think. Trust your own instincts and show up for life everyday the best you can that day. Well thats just what I  think anyhow.

have a great evening ladies

Teka

Hi!

Sweet dreams to all.

Sugar77

I hope everyone is having a good evening.

Today I attended a lunch and learn at work put on by our HR department.  It featured an outside speaker from our Employee Assistance Progarm taking about Stress and Resilience. It was really good and I learned some really good techniques for coping in stressful situations.

LRM216

Important:  Regarding the John Hopkins Article:  Please read the following Snopes.com article in which John Hopkins REFUTES ever publishing the article. 

http://www.snopes.com/medical/disease/cancerupdate.asp

jenn3

I can't imagine anyone being Stage IV and thinking that chemo and radiation won't help, but that they'll beat cancer with diet, exercise, avoiding plastic bottles, etc..... And, cancer is of the mind, body and spirit - I know offense wasn't meant, but really???

cc4npg

MonikaV:  I think it's all of the above.  The surgery was a piece of cake for me.  I had very little discomfort.  But it's still surgery and there is anxiety associated with that. 

Teka:  Cute kitty!

Titan

Whew...glad we cleared that one up..I KNOW that MGB meant well (love you!)..but we can't all start freaking about water bottles and saran wrap...for one thing..we ALREADY have breast cancer...and we can't all go looking back on what we may have done and blame ourselves for our breast cancer...this was NOT my fault..OR your fault...it just happened..I do agree that we do need to try to take care of ourselves now...eating right and exercising...well..that's a good thing to do whether or not you have breast cancer..it just makes you feel better!..there is nothing wrong with that..

Ok...off the soapbox.

I have a hard time keeping up with you guys but reading on here..for you just starting chemo..good job..it will be done b-4 you know it.  and for you DONE..YAY...you do freak out after you are done because you wonder what will happen now...well..get on with it..no one knows if we will have mets or reoccur...so try to live and move on..not easy but you can do it.

I'm two years out in 12 days...I can't believe that it has been 2 years! And I feel good..really good...I know that TN can come back in a second..but you know what...I'm not going to worry about it until it happens...I just can't...I've got things to do

MBJ

OMG!  You are so right--it is NOT an accurate article and I have been bamboozled!  I didn't even read the whole thing, just passed it on.  My sincerest apologies!!!

Anonymous

MBJ- 20 lashes with a wet noodle. Punishment over.

LRM216

MBJ:

Not to worry.  I received it from a dear friend the night of my first chemo.  I sent it to another friend you took it upon themselves to check it all out and found it to be totally bogus.  Now there are many sites available to disapprove it ever came from J.Hopkins.  So you are far from the only one bamboozled by it.  At least you can put your mind to ease that it's not true.

SunnyCoconut

MonikaV - I had the same feelings about my exchange surgery.  It seemed like the other surgeries were so necessary but this one was sort of elective.  I felt like I was pushing the envelope.  I now realize that was silly -- I mean, how could I have kept those ridiculous coconuts in me?!  This is necessary.  Also, I felt kind of put through the ringer, beat up and tired.  I didn't want anyone else hurting me.  Even having blood tests would almost make me cry because it would hurt my feelings if they stuck me too hard.  I just wanted to heal and get strong again - both mentally and physically.  It's ok though - you will feel so much better with soft comfortable boobs again.  And you will be so close to the finish line!!  I wish you best recovery!

MBJ -  I also received that email from a very good friend before I even started treatment.  It is so hard to decipher what's real.  We all want someone to just tell us what to do; give us the instructions so we can get through this!  Anyway, I loved your "bamboozled" word!

Teka

cc4npg,

Maine Coon, and she loves to fetch cat toys.

MBJ

Heidi:  I should be forced to wear the Stooopid T-Shirt for a day, lol!

SunnyCoconut:  Thank you for putting into words what so many of us feel.  Since I am a Uni, not getting the exchange was out of the question--I was so lopsided!  I will be getting my nipple on Tuesday, and part of me wants to run away and put my head in the sand!  Why can't I just be happy with my "Barbie" boob?  Since I didn't get a port, my veins are nonexistent.   Every time I get poked, I am a bruised mess because it usually takes a few pokes to get any blood out of me!  I keep telling myself that after my surgery I will finally be done, but there is always that dark cloud of fear following behind me.

jenn3

I think that people sometimes prey on cancer patients...........MBJ, no hard feelings - I wasn't feeling well last night and know you were only trying to pass on good information.

MonikaV

Sunny Coconut . Thanks for the encouragement. When did you have your exchange? Silicone or saline? If silicone, do they feel cold to you? Sorry so many questions.....

Kymn

did anyone keep working who took FEC-D?? I am thinking I will but not sure if this is wishful thinking or not

Anonymous

My wife kept working all through the FEC. She would take 2-3 sick days after every treatment and then go back.

SunnyCoconut

MonikaV - I had silicone, my exchange was in Nov.  Sometimes I think they are cold, but I remember my real boobs being cold sometimes too, especially after working out.  What's really weird is when you get a chill and it almost feels like your nip is shriveling but you don't have one!  Well not a real one anyway.  The phantom headlights!

Suze35

Coming up for air now that surgery is done! I was released yesterday, and am feeling pretty good. Not on any painkillers, and very little discomfort. The home nurse changed my dressings today, and all looks great. My surgeon thinks I'll be able to get the drains out Monday, yay! I had a bit of a rough night after surgery because they gave me narcotics after anesthesia, so I was vomiting a lot, but once they got that under control I did well.



My BS said she didn't see anything that I should be concerned about, and that my nodes showed chemo effect. She also commented that the breast felt "hormonal" with lots of fluid. I think I may have been developing a little breast lymphadema, but I will mention the hormone thing to my onc just in case. So no obvious malignancy, now I just wait for the path report.



Beccca - I'm glad to hear you are also doing well!



Regarding diet, etc., I'm using "the Anticancer Diet" book. Workable, doable, reasonable diet changes. Low fat, good carbs, high in Omega 3s, lots of fresh veggies and lower carb fruits...honestly, it feels like a diabetic diet, and some studies have suggested a link between TN and insulin levels. My goal is to keep my body in a good state with regular exercise and small, healthy meals throughout the day to keep my insulin steady. And have the occasional crap meal and wine . Cause life ain't worth living without some wine here and there!

beccad

I had my nausea and vomiting this a.m. I called and got zofran called in for me.  I don't know why it hit me 2 days after surgery, but it did.  I have been doing my arm lifting exercises that the BS showed me to do.  They are kinda hard when you start, but by the 5th or 6th rep they don't hurt as much.  I do think I am getting my arms back a little  more each time.

Suze- I am waiting for the path report too.  I am thinking I will hear about it next Tuesday.   Glad you are doing good, too.  I have had to take vicodan the ses 1st 2 days, but trying to go to just tylenol this afternoon and early evening.  

Babs37

Suze- Glad to hear you are doing fine after surgery.... Yeah!!! Finally done and over with!

Beccad- Happy for you too and glad to hear that everything is under control.

I'm 2 weeks past my surgery (right mast. and node dissection). My doctor had to give me something for the pain I have in my arm and armpit. It is due to nerve damage were the nodes were taking out and it feels like I have a bad rash on my skin and it hurts to the touch or when my clothes rub against my arm. He says it could last for a while. I had to take Dilaudid for my pain because I couldn't do my exercise if I didn't take something before and Tylenol just didn't do anything for me. Today, I feel less pain and it feels good. I just take the meds for my arm pain and nothing else. I have an apointment with a PT friday because I have a tendon that is stopping my arm from going up. It feels like if I have a rubber band in my armpit. Hope I will be back to normal soon..................

Oh, and I should get my path report in 2 weeks. Can't wait to know.....

Titan

MJB..you are anything but STOOPID....we all can wear that t-shirt sometimes..chemo brain is our excuse.

Babs..glad you are feeling a little better...I had a lumpectomy so I really can't comprehend the masectomy ordeal.. good luck to you!

Sugar77

Kymn - I didn't work through chemo or rads. My health benefits through work covered my salary so I took the time to focus on treatment and my family and I'm glad I did.