After Radiation
Comments
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Thanks so much to Sherryc and Juliet62 et al who responded to my comments with concern and support..
When I went online and Goggled auto-immune diseases and fibrosis I discovered that since at least 1989 there have been studies connecting breast Radiation Induced Fibrosis (RIF) to auto–immune diseases like scleroderma, rheumatoid arthritis and lupus. Before I discovered this, because of the lack (feigned?) of knowledge and interest on the part of the rad onc I decided to try to do my own inquiry to see if those who developed RIF had an auto-immune disease that could be a critical factor in developing RIF.
From the beginning, I suspected that the damage I was experiencing had something to do with the immune system, since I have an auto-immune disease. It appeared that the immune system was gradually being alerted that cells in the breast were damaged by the radiation and attacking the damaged cells - as is the job of the immune system. If there was an auto-immune disease present in this percentage of women who developed radiation induced fibrosis, then the immune system was reacting (or overreacting), as it did in any auto-immune disease, which meant women with auto-immune diseases were at risk for this result and should be diverted to other treatments or less radiation, thus sparing them the pain, suffering and mutilation they are now unwittingly being subjected to. They could at least be able to make an informed decision about opting for radiation if they knew the possible consequences for women who have immune system disorders.
So if you’ve ever had an auto immune disease or problem or a virus with seemingly lingering effects which could be an auto immune disease, please let me know via this blog or send me an e-mail at devieliza@gmail.com. I’ve drawn up a one page survey for this purpose and if anyone is interested I will send them a copy, but I haven’t figured out yet how best to do this; whether by email or by paper copy. Any suggestions? Eliza devi
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Eliza---i would like to help you out with the auto immune disease survey if you can send me by email.
I do know things like Diabetes,Raynauds (which I have) and Asthma along with others that I cannot think of right now are now gonna be considered cousins...Thyroid,BC.damn if you have a crappy immune systeem you are basically screwed...BUT there are ways to build it up....exercise,vitamins,food etc.YOU CAN MAKE YOUR BODY STRONG.
Its hard with this push pull situation soooo we have to work with what we have and fight fight fight....like everything else....this bc sure does suk!!!!!1
JO JO-----safe trip.....enjoy girls..wish i was there.huggggggs everyone....details please...
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Congrats, Sherry! All you ladies getting together, have a great time!!
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Its Oct. first....pinktober just began.grrrrrrrrrrrrr......
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Sherry, Congrats and I hope you all have a wonderful time together! Give a toast to recovery and better times ahead!
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Here is a picture of me and Jo Friday night.
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GREAT pic!!
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wow....she really did it.....did anyone notice JO JOs pink hair.I thought she was kidding.guess not.ha...The Pic.is great.you girs are great!!!!!! and I know you had a great time....Chrissy you are MY HERO!!!!.0
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Wonderful! Love it!
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Granny - I told you I was gonna do my hair pink and I did. It is just a temporary hair spray that washes right out.
What a fabulous time in San Antonio. The gals are wonderful and what a feeling to be able to hug someone in person. So many laughs and all sort of emotions. So glad I went.
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im glad you went too...im sure you are sleepin right now soooooooo hats off to you THE LADY WITH THE PINK HAIR!!!!!!!! You rock.
tomorrow is another day for JO JO>>..sleep well my sista.pleasant dreams.huggggggggggg K
details tomorrow.ok?
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So enjoyed the pics! Thanks for sharing
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JO! You ROCK! Glad to see you are having fun! I need to do the same!
The picture is GREAT!
Tori
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Granny - Next time you will believe me when I tell you something. When I said I was going to spray my hair pink, I was dead serious. I am sitting here today with pink hair and will have it the entire month.
Tori - I had such an amazing time.
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Granny I might add the Jo looks pretty darn cute in her pink hair
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Jo, I think I might be buying a can! If football players can wear pink, so can I!
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I am so f/n tired of seeing pink I want to spit................................Love your hair Jo, and you have earned the right to have pink hair.............................I'm talking about all the freaks who know nothing about BC, or what we have had to deal with are still dealing with .....................they think a % of whatever they are pushing at the time will take all our troubles away..................well..............................listen up bucko.........................THAT IS NOT HOW IT WORKS........................they have been doing this pink shit for years.....................do we have a cure....................no what we have is, Chemo that almost kills you......................Rads that burn your ass, give you SE's for months after your done.............................stinkin anti-cancer drugs that make you feel like your 25 years older in body then you are.......................and lets not forget LE..........the "mother" of them all...................................they can take their pink shit, and shove it you know where..................................I'm sick of cancer, sick of LE, sick of feeling sick, and above all "SICK OF PINK'..............................ok, now I"m going to go find the Vodka....................
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Yes GrandDuke,
I can email you one of the inquires. See my email address above: devieliza@gmail.com. Just email me there and I will reply and send it to your email. Thanks! eliza
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ducky - I do think I have earned the right to wear pink hair but I will tell you I do get sick of being blasted with all the pink crap. I do have a pink survivor tee shirt that was given to me by a dear friend on the day I finished rads and a few pieces of jewelry. I do have my limits on how much stuff I can tolerate. If you have found the Vodka - I could use a shot - LOL
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Ducky---darlin sista---altho you always crack me up you pput it sooo well.Why dont you start a thread with exactly just what you wrote on here just to see the kind of response you get from the sistas.that would be sooo interesting.
MY tech just put something on facebook about the pink shit....i tell her when ever i see her doin the walk,runs and parties for bc i yell at her.she tells me its her job and stop bein so negative.She is my friend so i still preach to her about where is the damn $$$$$ and all the other suff but she does it for all the people who have not made it in her family.WELL THEY SHOULD HAVE!!!!! and how lucky i am to be NED.I give up.
JOJO you are the only one who can get away with that pink hair and still look good.I have pink stuff but i wont wear it during oct.i love HOT PINK..
im gonna rant and rave all moth with this pinktober.
its betta then talkin about AFTER RADS.!!!!!!
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Hey Ducky~ what made them pick PINK? I've yet to see that color during treatment, I mean RED for the red devil chemo pee, or how bout GREEN for the pukes, maybe some ASHEN GRAY for the skin that falls off during radiation, or isotope BLUE like the pee too, or WHITE for how pale you look when you get dx? I mean really what's pink??
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Gina - Someone decided "pink" should be the color because we are girls - talk about stereotyping - give me a break.
What a joy you are - will never forget the visit. Thanks for offering me your jacket after that darn pigeon shit on me. It is kinda funny now.
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Hey Gina---good question...which jerk gets to pick what color anyway?????Why dont they use the hospital gown we have to put on everytime we go for tx.maybe that would make a better statement....
I do like peckertober better!!!!!!!
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LOL!!!!!!!!!! If they chose pink cause we are girls they better check our closets - bet we all own lots of black??? I have a WHOLE journal entry on the "scratchy cotton one size fits all small" gowns! Yep Granny, I'm still waiting for the "manogram" to come out, perhaps that would fit with the peckertober?
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AGREED.Black is the color.yeah i bet we all have 1/2 wardrobe full of back.
would love to walk into my hospital where there is a sign that says MANOGRAM.Betch not one man would show up.AND the peckertober well that calls for a tee shirt.of course after the manogram!!!!1
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this morning I was asked to join a group to have a photo op with the County judge for the Breast Cancer Proclamation. Wouldn't you know that me and the other younger girl were the only ones not wearing pink. We laughed and said we were rebellious. haha And the thing is pink was always my color before BC so I have alot of it in my closet.
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Sherry - Just your luck not to have pink on. See, you should have done the pink hair like I did. LOL
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Yes, the Pink Ribbon Campaign is just a money scam to manipulate our emotions and sentiments. We've been hearing the same propaganda to raise billions (maybe trillions) from the medical- industrial complex for decades now - at least since the fifties. There is no cure for cancer, but.... the pharmaceutial corporations have been making billions off the carcinogenic birth control and estrogen replacement "therapy" hormones they've been scaring us into buying, taking and doctors have been prescribing for decades now. And still the rates of cancer rise, while the off-shore bank accounts of the cancer industry swell.
When I went online and Goggled auto-immune diseases and fibrosis I discovered that since at least 1989 there have been studies connecting breast RIF to auto–immune diseases like scleroderma, rheumatoid arthritis and lupus. Before I discovered this, because of the lack (feigned?) of knowledge and interest on the part of the rad onc I decided to try to do my own study inquiring if those who developed RIF had an auto-immune disease that could be a critical factor in developing RIF.
So if you’ve ever had an auto immune disease or problem or a virus with seemingly lingering effects which could be an auto immune disease, please let me know via this blog or send me an e-mail at devieliza@gmail.com. I’ve drawn up a one page survey for this purpose and if anyone is interested I will send them a copy, but I haven’t figured out yet how best to do this; whether by email or by paper copy. Any suggestions?
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Eliza-I sent you an email and it came back.Do you have any other way of getting this out there?I am very interested in this as i do have at least 1 auto immune disease.There are soo many i kinda lost count.0
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I finished rads on July 21 and really did not have the tired feeling back then... But for the last week or so I have gotten very tired almost everyday. Would this be from the rads? It is a different tired feeling. Don't really know how to describe it...
Cindy
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