CancerCompass message board discussion started by dinparadise on 5/15/2008 http://www.cancercompass.com/message-board/message/all,24047,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Ok, a week later and now I've lost my taste buds.  Everything tastes the same; warm and bland.  Anyone know how long this lasts?  I was so excited to eat again yesterday and didn't enjoy any of it!  Bummer! LOL dinparadise Thu, 15 May 2008 00:00:00 GMT Nor seeing your original post as far as when you had RAI (was that the one week thing?). But what lemon/sour/salivating methods did you use? Red Star RedStar17 Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 dinparadise wrote:Ok, a week later and now I've lost my taste buds.  Everything tastes the same; warm and bland.  Anyone know how long this lasts?  I was so excited to eat again yesterday and didn't enjoy any of it!  Bummer! LOLI had to smile when I read your message....I too was sooooo ready for pizza and a beer.  My tastebuds disappeared pretty quickly after RAI and it took 4-6 weeks for them to return.  SUE Susan52 Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 RedStar17 wrote:Nor seeing your original post as far as when you had RAI (was that the one week thing?). But what lemon/sour/salivating methods did you use? Red StarHi RedStar!  Good luck tomorrow.....I had lemon drops in my mouth constantly for around a week after RAI.....hoping to avoid damage to the salivary glands.  Apparently it wasn't enough......about 6 months out I started having trouble.  Nothing really serious, but painful none the less.  I wish I'd worked harder at it....maybe sucking on real lemons....the lemon drops tend to be pretty sweet too and I can't say I thought they were sour enough.  A good dill pickle will get my juices running just thinking about it so wonder if that might not have helped me.  I had my 1 year WBS a couple weeks ago and the scan showed uptake in those glands....which i could have told them without the WBS!   Point:  take these tips to heart and do everything you can to minimize the damage/scarring!   :O)   SUE Susan52 Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 RedStar17 wrote:Nor seeing your original post as far as when you had RAI (was that the one week thing?). But what lemon/sour/salivating methods did you use? Red StarHad it on May 7th, WBS May 14th.  I have been sucking on lemon drop and drinking fresh lemon aid till I can't take anymore.  I also read that vinegar was good for it also.  I had oil and vinegar every night on salads.  I also made a veggie marinade of oil and vinegar.  So far my salivary glands are fine.  Just my taste buds. dinparadise Thu, 15 May 2008 00:00:00 GMT Hi there, I don't have my RAI til the middle of next month. I have been putting alot of thought into how to manage possible complications which I seem to get all of. Has anyone tried Warheads, or sour patch kids, or sweet tarts. Sour gum? In my experience lemon candy really isn't that sour. lemonheads loose their sourness pretty fast. I can't stand anything sour so this will be a real treat! indigogirl Thu, 15 May 2008 00:00:00 GMT The problem with some of that stuff is that it has either red dye or iodine in it, which are a big no-no if you have to be on the LID.  I ate some kind of sour mint.  I can't remember the name, but I think it is made by the same people that made Altoids, because it looks like them.  I really didn't have any problems with my taste buds or salivary glands.  My dose of Rai was pretty small though (75 milc.) maybe that is why.  Drink lots and lots and lots of water.  Oh, and if you do suck on sour candy, I was told to wait a day by the Dr. that gave me my Rai, I am not sure why though. skylog Thu, 15 May 2008 00:00:00 GMT Thanks, I didn't think about the fact that some of those candies could have iodine. More research to do! My dose is 150 so I better get on the ball. indigogirl Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 NOBUTTERFLY wrote:Thanks, I didn't think about the fact that some of those candies could have iodine. More research to do! My dose is 150 so I better get on the ball.My dose was 150, too, and I was very nauseated the entire weekend.  I ate Warheads (don't eat the red ones in case their is dye), sour Jellybellies, lemon drops---the whole shebang.  I was faithful, but still had salivary glands swelling (looked like I had the mumps) and I lost taste for awhile.  Everything finally readjusted, but I was concerned that it wouldn't.  I had my RAI tracer yesterday and get my WBS tomorrow.   Prayers out to everyone.  I'm glad we all have one another for support!  Tara   YaYaTara Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 YaYaTara wrote: On 5/15/2008 NOBUTTERFLY wrote:Thanks, I didn't think about the fact that some of those candies could have iodine. More research to do! My dose is 150 so I better get on the ball.My dose was 150, too, and I was very nauseated the entire weekend.  I ate Warheads (don't eat the red ones in case their is dye), sour Jellybellies, lemon drops---the whole shebang.  I was faithful, but still had salivary glands swelling (looked like I had the mumps) and I lost taste for awhile.  Everything finally readjusted, but I was concerned that it wouldn't.  I had my RAI tracer yesterday and get my WBS tomorrow.   Prayers out to everyone.  I'm glad we all have one another for support!  Tara  Hi, I thanks for the heads up on the candy. I  just read a post from before that you wrote RE tanning. Sorry to hear you have gone through so much. Good luck with your scan :>candy  indigogirl Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 Susan52 wrote: On 5/15/2008 dinparadise wrote:Ok, a week later and now I've lost my taste buds.  Everything tastes the same; warm and bland.  Anyone know how long this lasts?  I was so excited to eat again yesterday and didn't enjoy any of it!  Bummer! LOLI had to smile when I read your message....I too was sooooo ready for pizza and a beer.  My tastebuds disappeared pretty quickly after RAI and it took 4-6 weeks for them to return.  SUESue, Your post made me laugh. I too enjoy the pizza but with a cocktail neither of them really like me though! I am hyper right now on the cytomel and the cocktails barely hit me.  So for a question that you really don''t want to ask your doc. Did the alcohol affect you different on the LID?  indigogirl Thu, 15 May 2008 00:00:00 GMT I had radiation from the tip of my nose to the middle of my chest for 5 days a week for a month.  My mouth was so trashed.  I couldn't taste for about 7-8 months.  My mouth has been hyper sensitive ever since.  I finished the radiation at the end of October 2004.  I use Bio-tene toothpaste and Oasis mouthwash (watered down).  I use Oral Balance gel at night to keep my mouth from drying out too much.  Since I am on a CPAP machine I breathe through my nose all night and my mouth is closed. It helps.  I use Oasis spray during the day or an Oral Balance for daytime use.  I can't tolerate sugary, salty, or spicy foods and have a hard time swallowing anything dry.  I can't swallow meat most of the time.  My life revolves around how my mouth feels.  They removed a salivary gland with the tumor.  I take Civimeline 3 times a day to help me make saliva.I went through a period of time when I had no sense of smell.  Now I have a little but I can only smell about 6 things and they all stink!My teeth stick to my lips.  My mouth tastes horrible all the time.  I guess you guys have had a much easier time.  Kitty GrammaKitty Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 NOBUTTERFLY wrote: On 5/15/2008 YaYaTara wrote: On 5/15/2008 NOBUTTERFLY wrote:Thanks, I didn't think about the fact that some of those candies could have iodine. More research to do! My dose is 150 so I better get on the ball.My dose was 150, too, and I was very nauseated the entire weekend.  I ate Warheads (don't eat the red ones in case their is dye), sour Jellybellies, lemon drops---the whole shebang.  I was faithful, but still had salivary glands swelling (looked like I had the mumps) and I lost taste for awhile.  Everything finally readjusted, but I was concerned that it wouldn't.  I had my RAI tracer yesterday and get my WBS tomorrow.   Prayers out to everyone.  I'm glad we all have one another for support!  Tara  Hi, I thanks for the heads up on the candy. I  just read a post from before that you wrote RE tanning. Sorry to hear you have gone through so much. Good luck with your scan :>candy Thank you so much!  This board is wonderful.  I have felt so "alone" this past year.  My family thinks all is well because I don't complain about it---and none of the dietary changes affects anyone but me.  I don't want pity from them, but sometimes I wonder why they don't realize that the word "cancer" scares a person.  I've been dealing with it for years now and I don't think a day has ever gone by where it doesn't enter my mind (whether it be because of a commercial or any other form of media).  I understand that women are getting thyroid cancer in record numbers.  I wonder why?!   Good luck to you, too, Candy, with all of this!  Tara   YaYaTara Thu, 15 May 2008 00:00:00 GMT I am so glad I found this board...it makes me think and hope.......There is so much information out there--vs/vs but nothing is set in stone.  Everyone is different.  People have different reactions.  Yet, some people respond in similar ways and by sharing that we can all realize that we are not crazy!  We are able to help each other so much.  I am grateful.I was told by my endo to drink plenty of water and to suck on hard candy or chew gum at all waking hours after RAI.When I talked to the nuclear medicine guy on the phone and asked him my list of questions he told me that it wasn't necessary.  In some cases it made the supposed impending problems worse.  He said that on the remote chance dry mouth or pain in the salivary glands becomes a problem after three or more days then to try the candy thing.  Has anyone else heard this?  Or tried it?  I am scheduled for RAI 6/4 and I am nervous as heck about how I am going to feel afterward.  I am not one of those people who suddenly discovered they had a problem.  I had a problem--couldn't eat for months because I had such a hard time swallowing--but never in a million years thought it was cancer.  I just want to come out of this feeling better--not worse.  All I can keep telling myself--and would tell you all--is that it is so much better to be here than not!  We are lucky--we have a very good chance!  Right?!  Take care of yourselves.  Please. lrquake Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 lrquake wrote:I am so glad I found this board...it makes me think and hope.......There is so much information out there--vs/vs but nothing is set in stone.  Everyone is different.  People have different reactions.  Yet, some people respond in similar ways and by sharing that we can all realize that we are not crazy!  We are able to help each other so much.  I am grateful.I was told by my endo to drink plenty of water and to suck on hard candy or chew gum at all waking hours after RAI.When I talked to the nuclear medicine guy on the phone and asked him my list of questions he told me that it wasn't necessary.  In some cases it made the supposed impending problems worse.  He said that on the remote chance dry mouth or pain in the salivary glands becomes a problem after three or more days then to try the candy thing.  Has anyone else heard this?  Or tried it?  I am scheduled for RAI 6/4 and I am nervous as heck about how I am going to feel afterward.  I am not one of those people who suddenly discovered they had a problem.  I had a problem--couldn't eat for months because I had such a hard time swallowing--but never in a million years thought it was cancer.  I just want to come out of this feeling better--not worse.  All I can keep telling myself--and would tell you all--is that it is so much better to be here than not!  We are lucky--we have a very good chance!  Right?!  Take care of yourselves.  Please. I have never heard to wait for the symptoms then treat them; it would be too late.  All doctors and nuclear med techs encourage the use of lemon drops and some even go so far as to say suck on lemons.  Why be reactive.  Always be proactive where ever possible.  Pop those lemons drops immediately!  by the time your salivary glands swell or your taste buds go, it's too late! dinparadise Fri, 16 May 2008 00:00:00 GMT That's kind of what I thought too but it's so hard to figure out which way to go and whose advice to take.... lrquake Fri, 16 May 2008 00:00:00 GMT  On 5/16/2008 lrquake wrote:That's kind of what I thought too but it's so hard to figure out which way to go and whose advice to take....I was told by the doctor to suck on sour candies.  The Nuclear Med guy told me it hasn't been proven to be effective.  I've read everything from eating lemons the day before RAI to waiting 24 hours after RAI to start the sour stuff---to doing nothing at all.  I did the candies until I can't look at one now w/o feeling nauseated.  I still had salivary gland problems (just some swelling like the mumps and pain--weeks later).  It has pretty  much resolved with an occasional flare-up.   Do you know your dose of RAI?  Mine was 150 and that might make a difference in the risk factor of affecting the glands..  No matter what, it really will get better.  It's rough at first, but you have people here to help you and support you!   Good luck!   Tara   YaYaTara Fri, 16 May 2008 00:00:00 GMT Right now they are 'gestimating about 150 because of the size of one of the more larger "things" they took out.  They will know more they say-- when they do the tracer.  Lately when I eat--still have a lot of trouble swallowing--I think back to just less than a year ago when I did what I used to think was impossible....appetizer--usually several, entree +salad, dessert (I was pregnant)!....now I wonder if I will ever be able to enjoy eating again!  I just want to be better--but keep getting cautioned that this is not a wonder fix.....then I read about all of you having problems after RAI and my heart just aches for you.  After all you have been through you DESERVE to feel better.  Just know that I think of you in some way all the time and I wish you well.  Take care.  lrquake Fri, 16 May 2008 00:00:00 GMT