Lemons - How Long???

In middle of my RAI. Longer post later, but so far it's all been very do-able. Luckily my biggest problem right now is...

How Long With The Lemons? I've finished day #4. Light is at the end of the tunnel. But can I lay back on the lemons by now? I do fear that taste-buds thing in the future. My sheet says lots of liquids (to flush out kidneys) for 2 days after my big pill and mentions sucking on lemons with no date attached. I'm wondering if 4 days of extra salivating is enough. Better safe than sorry, I know, but I'd hate to run from every lemon that I see once this thing os over!! :0)

RedStar

My advice is don't stop.  You can cut back but keep going.  I had my RAI on 5/7.  On 5/14 I lost my tastebuds.  I did not discontinue lemon drops.  My salivary glands are ok, but I still have no taste buds.  Today my nose and throat are all dried up which makes me a little nervous.  I am actually sucking on real lemons; can't taste them anyway! LOL  Side effects can linger so don't think everything is ok for quite a while.  As long as you don't mind lemon drops, I'd keep going.

I've had RA I treatment twice and my highest dose is 150.  I'm almost done and have my scan tomorrow.  Each time I have had my dose the doctor at the hospital told me to not do lemon drops and sour patch kids.  They did a study on this and said it makes it worse.  He said it's bad to keep your glans going all the time.  I lost tast for about a month after my first treatment and now I am starting to not tast again. but so far it's not as bad as the first time.  I have stayed away from sour things hoping that my tast will come back faster.  Studies have shown that your tast may not ever come back fully to what it was before treatments, it will come back. I took the advice to not do lemons because of this study.  I trust the radiology  doctor at the hospital because they have been so good to me with all my questions, scans and treatments.

Great. (Irony). Here's a post that I didn't need. Conflicting messages. Hmmmmm. Let's see. Here's what I understand. The radioactive stuff likes to "park" itself in three places. Anywhere where's there's iodine-grabbing thyroid tissue, your bladder and your salivary glands. The last two just because they tend to hold fluids longer in the spreading of the radioactive message. So the salivary idea is to flush them out as much as possible. When you salivate you just that. That's my humble. layman's, pedestrian two-cents worth of knowledge. I've been sucking straight real-life lemons and then feeling my slaliva pour out (crudely like the little glands are vomitting.) I assume that's good. You're the first two say otherwise. Anyone else heard one was or another? In the middle of RAI and getting real sour, RedStar PS: I wonder if the citric acid is the taste killer!! :o)

I have heard of the study she is referring to.  If you go back a few days in the postings, you will see a good discussion on it.  Supposedly the study was conducted, but was inconclusive and not proven.  Doctors are saying the concensus is still suck on lemon drops/lemons.  Because I've lost my sense of taste, I have actually been drinking fresh lemonade and sucking on lemons.  Look back in the postings for more info on the study.  I personally have not seen nor asked my doctors about the study.  But I don't think it can hurt and it seems to have kept me from swelling.  So...I'm doing lemons! LOL

Unfortunately, you won't find a definitive concensus due to the recent study.

I am curious about losing your taste buds. How does that feel? Is it frustrating? Do you even want to eat if you can't taste anything?

I go to the doctor on Thursday to find out when I do my RAI. I had my surgery on April 29th. How long do you usually have to wait after your surgery to do the RAI? I was told by the doctor I am no longer going to use that I have to wait longer because I had a PET scan on April 24th, before my surgery. He said that I have to wait a month from when I had the PET scan and THEN start counting for 6 weeks to do the RAI. The last 2-3 weeks of that 6 weeks doing the low iodine diet and then the RAI. So he is saying I have to wait 10 weeks from the PET scan and 9 1/2 weeks from my surgery to do the RAI.

 Now, I know this sounds terrible, but I turn 40 at the end of July and would love to have already done my RAI. I also don't want to have JUST finished it in case I feel bad right afterwards. I want to do it the 3rd week of June and hopefully feel good a month later for my birthday.

How do you feel after the RAI? Are you able to go back to work after the 5 days? Any feedback would be great! Thank you.

 

On 5/20/2008 PLS444 wrote:

I am curious about losing your taste buds. How does that feel? Is it frustrating? Do you even want to eat if you can't taste anything?

I go to the doctor on Thursday to find out when I do my RAI. I had my surgery on April 29th. How long do you usually have to wait after your surgery to do the RAI? I was told by the doctor I am no longer going to use that I have to wait longer because I had a PET scan on April 24th, before my surgery. He said that I have to wait a month from when I had the PET scan and THEN start counting for 6 weeks to do the RAI. The last 2-3 weeks of that 6 weeks doing the low iodine diet and then the RAI. So he is saying I have to wait 10 weeks from the PET scan and 9 1/2 weeks from my surgery to do the RAI.

 Now, I know this sounds terrible, but I turn 40 at the end of July and would love to have already done my RAI. I also don't want to have JUST finished it in case I feel bad right afterwards. I want to do it the 3rd week of June and hopefully feel good a month later for my birthday.

How do you feel after the RAI? Are you able to go back to work after the 5 days? Any feedback would be great! Thank you.

 

RAI was simple for me; not so for everyone though.  I had my surgery March 5th.  I started with the Thyrogen shots on May 5th with RAI on 5/7.  My WBS was on 5/14 and results on 5/19.  Make sure you ask about Thyrogen instead of hypo hell if you haven't already.  It is soooo easy compared to hypo hell.  You still have to do LID diet but it's not as difficult as it sounds. 

If you're lucky, you won't really feel anything during the RAI.  I rested, ate, read, and watched tv; ME time!  It was tedious with all the showers and washing linens constantly, but I used paper towels, old sheets and latex gloves.  I covered what I could (electronics wise) in saran wrap.  When the 72 hours was up, I washed down my room and bathroom and continued with my life.  I went back to work that week and haven't stopped since.

With that said, some patients report nausea and headaches with RAI.  I didn't have that reaction and a lot are like me.  It depends how much and how your body reacts. 

The taste bud thing didn't happen until a week after RAI.  Just when I went off of the LID diet!  Bummer.  Everything kinda tastes the same.  You have a taste, it's just not a good one.  Your brain tells you it's going to be really good and then it's not.  Very bland, warm, a little like tin.  I think everything tastes like hydrogen peroxide.  Every once in awhile flavor sneaks through.

I may not be a good example because I did well from TT to WBS.  I was back to work after 1 1/2 weeks from surgery.  No voice but I was there.  I only missed a few days during isolation and everything else has been normal.  I even started back with my yoga this week and it feels WONDERFUL. 

My advise is stay POSITIVE!  Push yourself when you can.  Don't give into self sympathy and/or lack of energy.  When you don't feel right, take care of yourself and then pick yourself right back up.  If your timing is right, you will be able to enjoy your 40th with no problem. 

This is just a hiccup in life and then you pick up where you left off.  If I can help with anything else, just let me know.  You will get a lot of differing opinions, but that will be good. 

Birthday Guy: A month after ending RAI would be nice, and it allows for a lot of leeway. ONLY speaking in my case, but without really pushing myself I am coming off RAI about now (2 more days) and feel pretty much absolutely fine. No real effects during this 22 days of hypo period nor from the RAI. (Knocking on a lot of wood). My endo said that different people react differently, and in my case I am slighlty weaker but not noticeable -- I still mow the lawn, work too long hours, etc. So you may be okay with a shorter period or no period. RedStar FYI... don't cut it too close however to your party. Although my endo said 6 days of radiation caution, and a radiation worker whom I know said after a few days an airline flight or a smoke detector exposes a person to more radiation that you give off, you may still not want to me crammed with people at your gala 40th until maybe a few days more. red Star

 

On 5/20/2008 PLS444 wrote:

I am curious about losing your taste buds. How does that feel? Is it
frustrating? Do you even want to eat if you can't taste anything?

I
go to the doctor on Thursday to find out when I do my RAI. I had my
surgery on April 29th. How long do you usually have to wait after your
surgery to do the RAI? I was told by the doctor I am no longer going to
use that I have to wait longer because I had a PET scan on April 24th,
before my surgery. He said that I have to wait a month from when I had
the PET scan and THEN start counting for 6 weeks to do the RAI. The
last 2-3 weeks of that 6 weeks doing the low iodine diet and then the
RAI. So he is saying I have to wait 10 weeks from the PET scan and 9
1/2 weeks from my surgery to do the RAI.

 Now, I know this
sounds terrible, but I turn 40 at the end of July and would love to
have already done my RAI. I also don't want to have JUST finished it in
case I feel bad right afterwards. I want to do it the 3rd week of June
and hopefully feel good a month later for my birthday.

How do you feel after the RAI? Are you able to go back to work after the 5 days? Any feedback would be great! Thank you.

It's
extremely important that you wait as indicated for RAI.  The
window necessary for the RAI to benefit the most is why you must wait a
minimum of 6 weeks.  Most people want it sooner because we just
want to "get rid" of the cancer as much as possible.  Surgery
removes the tumor and area infected, RAI kills the cells.  So it's
natural to want to kill the cell asap.  As for returning to
work...I returned to work after 5 days.  It was extremely
difficult because I was extremely exhausted.  If your job does not
require that you do a great deal of walking, lifting, pushing etc. you
should be fine.  You will need to rest immediately upon returning
home.  In closing...the loss of taste is the worst.  When I
ain't spare ribs I tasted lighter fluid and charcoal, when I ain't
potato salad I tasted only the mayonaise, so you will taste something
when you eat.  Unfortunately, it's not the ingredients you can
enjoy.  It's a major turn off, however, because I weigh only
120lbs at age 45, I made it a point to eat at least 2 meals per day
regardless of the damage to my taste buds.  In reference to the
lemons, this is the first I've heard about it.  I wish I knew
before because my salivary glands were damaged so bad, I can not eat or
drink anything sour.  It is extremely painful and my jaws become
swollen.  It's been 7 months since RAI for me.