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Darla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Darla Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 7:39am

Hi Nancy,

You go from red to purple on my screen. Thanks, I will read the articles. I had my port flushed today and the nurse told me 12-18 months on the cognitive stuff - we shall see.
 
Pam, don't be modest you post more useful info to this site than anyone.
 
Heather,
 
I did not resist my doctors at all. The rad onc said "oh, you're triple negative you'll have to have chemo". I had been sitting around for a month researching radiation. I had assumed I would not need chemo because I was stage one. I like to research everything but I had no time. They scared me because the rad onc got on the phone with the med onc to change my appt. from a couple weeks out to the next day and then they got on the phone with the surgeon to make sure I could have my port put in right away and start chemo the day after that. I'm sure that had I done the research I would have had the chemo anyway. I guess I'm angry because I feel I was duped. Why not tell a patient about the long term side effects? They warn you about what will happen during chemo - I was violently ill and I know that a lot of people don't react like that, the adriomycin was brutal. I don't think I would be so angry if I had been prepared for this. It sucks to hurt all the time, even typing this hurts my fingers. In my case I was already developing osteo arthritis so I think that the chemo pushed things along. Overall I feel that it aged me dramatically. Unlike a lot of women I had hoped to have a late menopause because of the effects of that on bones etc. 
 
We're all different and cancer brings out the best in some but not in others. You are a really amazing person and you will probably help others when you are further along in your journey. I am pretty skeptical about research.  I know how research gets done and lying with statistics is not just an expression it's a way of life. I guess I'll never be convinced that I HAD to have chemo in the medical sense but I HAD to have it because if I refused it and the cancer came back I'd have felt responsible. You have me pegged dead on - I am a control freak. I think our life situations make us react differently too. My kids are grown and I'm alone. My entire livelyhood rests on my reasoning and communicating ability so I get particularly frustrated with the cognitive issues. I am studying really hard for qualifying exams but I can't imagine how I can pass when I actually forgot my dog's name last week - and not just for a second either. Yesterday I had two well known political figures completely confused in my head all day - I couldn't figure out why the guy looked different - duh!  Last week an acquaintance who I ran into twice in one day jokingly said to me "I just saw your sister about 20 mintues ago" - despite the fact that none of my four sisters lives within 500 miles of here, I responded seriously "really" and I was quite confused for a moment until he said "she looked just like you" then I got it. I could go on and on (actually I have gone on and on). I shoul start a thread just to discuss the brain stuff. I'm keeping track of as many of my "senior moments" as I can so I can discuss the issue with my onc when I see him in Sept.
 
I have to find more effective pain killers so that I can get back on track - working out. I know it will make a huge difference in how I feel. I'm also really stressed because I don''t have funding this year and can't find a job and I am going on a new really crappy insurance plan.  You guys don't need to respond to my rants. I'm just glad I can come to this site and rant because everywhere else I have to fake it.
 
Peace
Darla
 
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 7:48am

Oh Darla, most of us understand so much of what you are saying and the frustration that goes along with it.  Cyber hugs to you and I sure hope things get better quickly for you,Hug

 
BTW, I don't think my cat is sure what her name is!
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 8:16am
Darla,
 
Ok..my posts go from red to purple...I did not have chemo...you should see the typos that I have.....and you gals think it's chemo brain? Then what is my problem??LOL Do not answer thatWink
 
Have you read any of my RANTS??? Sibu said that I won for the most graphic  post of the week. I am surprised that they don't delete mine from the site.Smile It is better that you relive that stress by posting here, as we all understand. Do not keep it inside!
 
You should start a thread on "Brain Stuff".
 
For a while there, I was watching the news almost all day when they had on as to the nominations for president. Finally, Lori said: "Mom, you have to stop this. You can't do anything about it and it just gets you all worked up". However, there were times when I would look at one of the Legislators, and for the life of me I could not remember who it was or where they were from. (Kept missing the little captions when they were on screen). Drove me crazy. Did it matter? I don't think soBig%20smile
 
Hugs,
Nancy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 8:58am
So, just to get it straight...the old white guy is McCain and the younger good-looking one is Obama? lol

Darla, I had always taken particular pride in my brain power and my career, as well. Cliche as it sounds, I've come to believe that when cancer suppresses one area of our lives, others do grow stronger. I realize now that I wasn't the most empathetic person before to others' 'weaknesses' (as I saw them). Having my primary ego-feeds taken away was very tough. My world came crashing down when I couldn't work all last year. Even with hubby's salary, we were greeted with an eviction notice just before Christmas. Many of the people around me upon whom I thought I could count, did not come through. Others came out of nowhere to save the day. Just because you're single doesn't mean you're alone and even if you have a big family, you may be left in the dust.  Cancer has helped me sort out the difference between family and family!

I'm sure that in addition to your reasoning and communications abilities, you have many other talents that could sustain you if needed. If these blossom throughout the process, you'll be at a whole new level when your brain does start firing up again. And it will!

Until then, rant away...







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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 9:11am
Donna,
 
OK Smartie!!! Few choice words that I cannot use hereBig%20smile
He is old isn't he?? LOL He is good-looking isn't he?Big%20smile
 
Yup! There are friends/family, and then there are friends/family.
Some go crawling into the woodwork when you are dx, while others come out of the woods like big cuddly grizzly's.
Nancy
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Darla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Darla Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 10:16am

You guys are all very sweet and wise. Just for the record I was  trying to figure out what was different about Tom Daschle - different haircut, more serious demeanor etc. Well, I had him confused (only in appearance) with Terry McCauliff (SP?). If I ever confuse Obama and McCain I will look for another career - I am a wanna be political scientist.

Donna, I can really relate to what you said about empathy. I have always been fanatical about proper grammar etc. I'm the one who walks up to the deli and tells them they have potato spelled wrong and it drives me crazy that students don't know when to use "its" or "it's"etc. I have never judged anyone by their appearance yet I was all too willing to judge someone by their writing/speaking skills. You can imagine how embarassed I was when I asked a professor via e-mail to "point me in the "write" direction" about something. You are right about the ego feeds - I live for my profs' approval and my last two papers, while acceptable, were less than stellar. You are so right about family and friends too. I am fortunate that I have a wonderful family. My parents and sisters have really come through for me.  I too had the experience of having people I thought really cared about me let me down completely and others turned out to be great support. I used to think you had to need help moving to find out who your real friends are. I am so sorry to hear about the eviction notice, I hope you were able to stay in your apartment. If it weren't for my family I'd be on the street by now. I finished my treatment Feb. 1st but I'm still paying for my treatment and that was with my "good" insurance.

Nancy, I relate more to McCain than Obama - McCain gets confused, mixes up Sunni and Shiite, accidentally says that Iraq and Pakistan have a common border etc. I wonder if he's had any chemoSmile.
 
You guys have really cheered me up.
 
Thanks
Darla
 


Edited by Darla - Aug 04 2008 at 10:19am
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 10:50am
Darla,
No. He is just really really old! Five years older than me. That is really really old. I think not!!LOL He has been dx with skin cancer a few times.
Both candidates scare the living crap right out of me!
 
While my postings here may, at times , not be up to snuff, it drives me crazy when the news anchors come out with phrases such as...me and her went to see that! Where did they go to school?
 
Nancy
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 11:39am

I just did a research paper for a class this spring on chemo brain. I found some interesting facts:

There was an awareness of chemobrain as early as 1970's. First studies were done in the Netherlands in the mid 1990's. Current research is finally finding conclusive evidence that chemo-brain is real. They still are not sure "how" it happens. It was always believed that the drugs were unable to cross the blood to brain barrier.

BC is the second largest group of cancer. Prostrate being first. More BC patients undergo chemo. Most chemo/cancer-brain symptoms were considered more womens issue's, so I feel not taken seriously. Women also being more outspoken and again, my bias, probably a bit more atune with physical/mental changes these challenges were attributed to menopause, emotionalism, sensitivity, age & stress.

Some studies attribute chemo-brain affects as many as 80 % although general findings usually state 20-30 %.
 
They used to say it went away within a few months of ending treatment. Testing has been done in a several year range now. Regardless of duration of chemo-brain studies have only been done for the past 10 years ! They still really don't know. But at least studies have finally been narrowed to where conclusive evidence is truly found.
 
 Dr.s & researchers generally coming from a scientific basis need specific conclussive evidence to believe something exists.
 
 
I think I've hit most the major points! I did not reread my paper, so with my chemobrain, I may not have been completely accurate [dates] so I generalized. No one really notices what I feel is my inability but I am aware of it. I used to love words and now I have a hard time retaining them, or dredging them up when I need them. I think it has gotten better, or LOL, have I just gotten used to it !
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Darla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Darla Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 12:40pm
Thanks Kirby, it's nice to know that it is being studied. You seem pretty sharp to me.
 
Darla
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Post Options Post Options   Thanks (0) Thanks(0)   Quote txhart Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 1:18pm
Heather,
I take comfort in your words. I feel that if I keep positive during this, that my brain will send positive vibes to my body as well. I've always felt that your feeling affect your body. One of my kids texted me last night and asked, "Are you only telling us the good news so we won't worry?". that was really comical to me, because to me, none of this is good news. But I suppose the way I'm explaining it to them.. well, they must feel good about my recovery as well. I'm 100% confident that I'll beat this. No hair? whatever. No left breast? blah, they can fix that. The point is, and always has been, I'll be alive! and that's the most important thing to me. I want to be here for my family.
When I got home from surgery today (had the port placement) my youngest one brought me jello and soup. That was incredibly sweet, and I know I have that support. My oldest had the kitchen clean and flowers on the table. It's those little things that touch me. To be fair to my middle one, he was at work. ha but he texted me!
I'm sending someone to rent movies so we can ride out this hurricane coming tomorrow.
Yeah, I'll be fine.
Love to all,
Linda
Linda
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Triple Negative Stage 2B
IDC 2.7
Diagnosed 7/24/08
12 rounds Paclitaxel
4 rounds FEC, surgery Feb 3, 6 wks of rad

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 2:27pm
Linda,
CarynRose posted to "Hbill" the other day as to a cd by Bernie Siegel. Maybe Caryn will see this post and tell you the name of it. I have read a book by him that Lori gave me. He is my hero.
Nancy
 
 
 
Found it
It is called "Getting Ready".


Edited by Nancy - Aug 04 2008 at 2:36pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 3:43pm
Drugs unable to cross the blood brain barrier?! HAHAHAHA And these are the people we put our trust in? May be related to the geniuses who are going to solve all our problems by building fence that makes it unable to cross the U.S/Mexico border barrier.

Nancy, neither candidate scares me at all. I survived the Bush administration AND bc. What more is there to fear?

PS Thanks for the comments--we were able to move to a smaller place, thanks to the help of my parents. This, as my sister was remodeling her million $ lake house and my brother, buying a second plot of land to build his dream house on.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote txhart Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 5:43pm
thank you! I'll see if Barnes and Nobles has it.
if not, good ole internet!
thanks!
L
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Triple Negative Stage 2B
IDC 2.7
Diagnosed 7/24/08
12 rounds Paclitaxel
4 rounds FEC, surgery Feb 3, 6 wks of rad

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 5:47pm
Kirby,
 
Chemo-brain affects as many as 80% although general findings usually state 20-30%?
 
I say let the dr's and researchers, who as you state "are coming from a scientific basis and need specific conclusive evidence to believe something exists " , speak to the 184,450 women who will be dx this year alone, and will go through chemo. Perhaps then they will believe that chemo-brain exists, and the percentage will probably be more than 80%.
 
How could the drugs NOT cross the blood to the brain barrier? Asprin relieves a headache. Am I just grasping at straws here?
Nancy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 6:33pm
The molecular structure of chemo was thought to be too large to pass thru the blood to brain barrier. The studies have varied as do the symptoms of chemo brain making it harder to pinpoint. Depending on who , which institutions were doing the research, this is why such a variance in % of who is affected. Original studies were inconclusive. As studies have advanced as well as technology, imaging of the brain has been able to show conclusively, with which areas of the brain are being affected. As more researchers are doing studies and information being shared, the ability to narrow down where and how the affectation takes place is greater.  The degrees people are affected vary greatly too. What has been identified is those that have undergone chemo, their brain has to work harder. Another source of difficulty is many women express cognitive problems that have not gone thru chemo. The shock and stress of dx has ended up being considered interrelated. A study I read years ago talked about stress and shock irreversably affecting the central nervous system. The difficulty in some of the research is getting baseline testing before dx or treatment. Another true factor in the testing has been using BC patients with many being older. We are all aware of many womens complaints with memory and menopause issues. I am not trying to defend any of the researchers, only giving you information I found. There are so many more people surviving cancer and treatment now, and greater #'s at younger ages that this will enable better studies as well.
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Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 10:37pm
Kirby,
 
I absolutely meant no disrespect to you in any way, and I definitely appreciate the information.
 
I just get so angry at times knowing that the cause or even the cure for cancer could have been found years ago, if it weren't for the political or governmental bureauacracy.
 
When our grandson went through chemo starting at age 3 and until he was 6, for leukemia, he all but stopped talking. That had to have been the stress/trauma. We pretty much had that figured out. At age 3 and to be so violently ill when getting the tx, and not to be able to understand why he was ill, or why they were constantly having to hurt him was devastating for us, and in his little mind, it was just terrifying. He never had a port, so when his veins started to harden and collapse, they started using the veins in his ankles. I do not remember any meds at that time for nausea, and he did throw up. He went to Hershey and it was a 2 1/2 hour ride to and from every week. Threw up every time. He always looked as though he was in a trance.
 
Socially, he did not progress as fast as other children his age. It took him a while to catch up. Now, he is in college and other than some weakness in his back and legs, he is fine. 
 
There is chemo brain, and every one that I have known who has been on chemo says the same thing. I just get sick and tired of hearing how they are doing a study, or there is more research....and then..they are no further ahead than they were 20 years ago. There has not been any new treatments for childhood leukemia for decades. That is sad.
 
Please Kirby, if I offended you by my post, I apologize. It was not directed towards you. It just seems as though no one gives a damn. For 184,450 women to be dx with bc this year alone, and for over 40,000 to die, is just unconscionable in the 21st century. They say they are trying to find a cure....well they are not trying hard enough. I had read somewhere or heard, that every minute someone in the worl is dx with cancer. Truly truly sad.
 
Hugs,
Nancy
 
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2008 at 5:13am

Nancy that is just so sad to hear what your grandbaby went thru, breaks my heart everytime I read or think about it.  I'm so glad he has grown up well and going to college.  Good for him!

Stage 2 2003
Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2008 at 5:37am
Nancy,
 
You asked me to post the name of the CD from Bernie Siegal.  It's called 'Getting Ready' and I believe that it now can be downloaded to an Ipod directly from the computer!!
 
Love,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2008 at 6:57am
No offense to any scientists out there, just that we could all make a list a mile long of the things that have been 'proven' in the past. Flat earth, earth is center of universe, the whole proton/neutron/electron model...

My father has been known to pull out a college text from the 50s that states emphatically that gorillas are incapable of the reasoning it would take to use even a simple tool. Now, there are gorillas with 1,000 word vocabularies. Maybe we're all just a bunch of gorillas waiting for science to catch up with us.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2008 at 6:58am
I've been enjoying this conversation, but snickering at you gals, too.  Kirby, hopefully you didn't turn in your paper with the statistics on "prostrate" cancer? Wink
 
Nancy, most headaches are not because of issues in gray matter, but tension, eye strain, high blood pressure, etc.  When you get a headache after a stressful day at work, your brain cells haven't been damaged!  That would be real trouble!
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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