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is there anything you can do to speed things up for your scan? if you complain a lot would that help? what’s the deal with the doctor? is there another doc that’s as qualified as the one who’s playing hide and seek with you? i hope you are able to get some action soon.
thank you kris for your support and for telling me about jeff’s lung treatment. i managed to get an appointment with my surgeon (from 2004) for the 30th. i’ve had some lung issues for years; however, i keep getting new clusters and with my marker continuing to rise… more than doubled in 7 months… i’m thinking it’s probably the beast.
i’ll let you know what the surgeon says and i hope, hope, hope you get a scan NOW.
barb hOctober 22, 2009 at 6:42 am in reply to: Practice of Denying Coverage To or Discriminating Against Americans Wh #30956
i already posted this at another place on the board…. but thought i should have posted it here. it’s a link to an article in the latest issue of aarp that is about insurance claims being rejected. one of the people in the article appears to have cholangiocarinoma and she lives in phoenix, az. here’s the link
kris i got the results of my pet scan. nothing showed up in my liver or the areas where i’m having so much pain (just like you).
there are more problems in my lungs and my tumor marker went up some more. but…..i was certain, due to the pain i’m having, that the pet would show lesions in my liver, abdomen, etc. i know this isn’t a guarantee, but at least we know that you can have pain and it doesn’t appear to be caused by the cancer….. wellllllllll, as far as accuracy in scans go.
don’t know if this will be of much help but here’s a link to info about scar tissue. i found it to be very informative as i’m experiencing a lot of pain since my last surgery.
hoping that your mom improves.
hey kris, i’ve been having increasing pain problems for ???? months…. in the surgical area and then it spreads around to the middle of my back. plus, i’m now getting significant pain on my left side. i have learned that my pancreas is atrophied and i do have dilated bile ducts in my liver. sooooooooooo, i finally was able to get a pet scan today and will get the results on monday. who knows, perhaps i’ll find out something. i just tired of the darn pain and tired of increasing the oxycontin …. gone from 10mg 3x every day to 30mg 3x every day. makes me very tired.
however, this blasted disease is darn near impossible to track as every time i’ve had a surgery there’s always more tumors than what appeared on the scan.
i’m still kicking… against all odds……… hope prevails.
oh yes, about your hair……….. i vote for being wild…. that is if you can handle hans’ reaction at the very least you could try on many wigs and inquire as to dyeing them if you should chose to do so and you could get really creative. later, if you decided you don’t like any of them you don’t have to wear them. you are in the driver’s seat and i say try to have some fun in a situation that you did not expect. you could video the episode and make it entertaining…. life gives you lemons you make lemonade.
Melonhead and Ron Smith,
i found a little bit of info that might help to explain your battle with edema aka swelling. perhaps it will be a bit of help.
wishing you both relief,
My father, who has throat cancer that has spread to his liver, has severe swelling in his feet. The doctor isn’t encouraging about using diuretics, but I’d like to try. Is there a reason not to?
Answer by Andrew Putnam
Andrew Putnam, M.D. is the director of the Palliative Care Program at Lombardi Comprehensive Cancer Center and Georgetown University.
You can always ask your doctor for a diuretic and see if it works. There’s no serious danger, but it may not do your father much good, and there are some potential side effects.
Diuretics work well for most kinds of fluid retention because they cause the kidneys to excrete more fluid. But if the cause of the edema is lack of liver function, as appears to be the case with your father, then it’s more complicated than other types of fluid retention. When the liver isn’t functioning well, it isn’t making adequate proteins. Proteins help balance body fluids by sucking fluid out of the tissues and back into the blood serum. In your father’s case, what’s needed is more protein to reduce the swelling in the tissues. Unfortunately, eating more protein won’t help because when you eat animal protein, the body has to break it down into amino acids and then rebuild those into human protein — and it’s this protein-building process that isn’t working.
A diuretic medication will remove fluid from the veins and arteries and cause it to be excreted by the kidneys, so it
sorry you are having a tough time. as far as your food intake goes, it’s been 3 years since my 3rd surgery and i still take “creon 10” (a prescription) 3 times a day with meals. it does help with digestion.
you might try to find a registered dietitian who specializes in oncology. if you can’t find someone via the hospital where you were treated, you might be able to get some help via the American Dietetic Association.
good luck Besty, hope you find some relief soon,
hi patty, i’m glad you got a kick out of my comments about my “match making” and the “flaws” that husband needs to work on. judy (the volunteer) is truly an amazing person.
for everyone who has suffered the tremendous loss of a beloved spouse, i offer my heartfelt sympathy. i hear your pain through your words……… the greater the love, the greater the loss… i hope that somehow, someway, your pain lessens as time passes.
with the greatest respect
barb hAugust 21, 2009 at 6:45 am in reply to: what are the known survival rates of CC at five years? #30437
thank you for your kindness.
my husband is scheduled for “nerve sparing” surgery this coming tuesday. he has an excellent surgeon and we are hoping that the cancer (although it’s a high grade per his gleason score) has not spread.
barb hAugust 14, 2009 at 2:57 am in reply to: what are the known survival rates of CC at five years? #30435
i’m a bit of a realist in that i always want to know what i am up against… perhaps so that i can try to be as prepared as possible and try to not leave any stone unturned. perhaps this is due to so many unheavals in my life … before cholangio. here’s a link that might help give you some info.
obviously, and thank goodness, there are exceptions to everything and i feel we must keep hope alive.
i found my own tumor in nov/dec 2002; 1st surgery feb 03; 2nd surgery feb 04; 3rd surgery aug 06; more than 4 years of various chemos/treatments. not currently on treatment … but holding ok but battling pain. husband dx with prostate cancer this week; brother with prostate cancer; another brother died from bladder cancer in jan this year; our 7 year old grandson dx with bipolar while in our care a couple of months ago; his single mother just announced (this past sunday) she is pregnant with yet another child……… these are some of the reasons i do not post here very often. having said that i do retain hope
wishing you the best,
i’m so much older than you (i’m 66…wow!), but feel as you do. i actually talked with a wonderful widowed (her husband died from cancer ) volunteer who has a lot in common with my husband and me. she hikes, bikes, etc. and i found out that she has grown a bit lonely since her husband passed away. she’s such a wonderful human being and i told her (i thought i was going to die soon a couple of years ago) that my husband was a really good guy and perhaps they might consider seeing each other after my departure.
so many people howled at my suggestion, but this volunteer was touched deeply that i felt that way, and did not say “no.”
since then, i’ve told my husband that he’s going to have to “clean up his act” a bit as this volunteer is soooooooooo nice and my husband can be a bit trying at times… a bit cranky… a bit spoiled. however, i do hope that when my time comes that my husband and this wonderful volunteer would at least give a relationship a chance.
now back to my cave….. too much drama here with my grown daughters and and my poor grandson who is bipolar.
dear peanut, i am so sorry for the loss of your mom.
there are some books that might help you through your grief. compassion books at http://www.compassionbooks.com is where i’ve found several books that have been helpful to several friends. i found this site when i was a volunteer for hospice a long time ago. some of the titles: Molly’s Mom died, How It Feels When A Parent Dies might help you and your brothers… also possibly for your dad …When A Man Faces Grief, A Handbook For Widowers and there are many others. the staff at compassion books are very kind and some have endured the loss of a family member. donna o’toole, the founder suffered the death of two children.
sending you a big hug,
peanut, i don’t visit this site often but perhaps my visit today will be of help.
marion, thank you for your reply.
hugs back to you
marion, my apologies if i sounded “short.” i could never give you or the rest of the “workers” of this board enough thanks for all your/their time, efforts, care…………. i truly appreciate all you do. this web site is truly amazing.
i decided i would ask about the bracelets in case i did not word my scribblings correctly. my brain is so fried….. at least (so far) i have not forgotten to pick up our grandson from school …i’m thankful for that.
thank you again.
about those bracelets. i received my “free” one and now….it’s gone. it slipped off my wrist and i don’t have any clue as to when. darn it. they are a bit on the large side.
i did order 10 more when i sent in a small donation plus $$ for 10 bracelets. do you have any idea when those will be sent?
thank you so much for all you do. i hope to at least check back here in a couple of days…………….i am so overwhelmed………..