I had my last chemo and radiation treatment, 9 weeks ago today.
I think I had it easy during treatments, I alway feel bad, but didn't get real sick but 3 times. I was able to care for self and husband with little help. drive and shop with help of elec. cart. since treaments, I have been getting weaker. My legs won't hold me up. I itch from head to toe, I can't seen to get warm, I did have some taste, now everything taste like card board. I have ask and all I can get is use a walker, drink more water and put on lots of lotion. one told me it could take a year to get better. I feel better during treament. How bad will it get before it gets better? do you ever get at least some taste back?

Rubyann,

I was about at my worst post-treatment at around 4 - 6 weeks out, but it did get better. The effects of the radiation are cumulative and do worsen after treatment ends. As everyone here has emphasized, every one is different and we all heal at different speeds and the treatment that your body just endured is brutal and harsh. Try to take good care of yourself, eat well, stay hydrated, take vitamins and get enough rest. Your body is going to do what it needs to do, but its gonna do it on its own schedule.

As far as being cold, have you had your thyroid levels checked? Being cold can be a symptom of hypothyroidism, something we're all at risk for.

Recovery is VERY individual. Some luck soul went rock climbing (!!) after the treatment while most are out for a while.
It generally takes a long time to reach the new equilibrium. Taste will return at least to some extent. You need to try and try things again. Re tired: TSH as Margaret pointed out. On the other hand I was also cold for about half a year (also massive loss of body fat and a screwed up metabolism) this is no longer the case.


M

Hi Ruby:

Hope you feel better soon. It took me a while til I started feeling better after I finished rad/chemo. My taste started returning after about 4 months. Weakness and coldness could be signs of your blood counts being way off. It could be anemia. If you havent had recent bloodwork done, then ask your doc to check it. Try taking some over the counter multi vitamins. I was told take the baby liquid vitamins cuz very high in iron and could put right in the peg tube. Please check in from time to time to let us know how you are doing.

In addition to everything above I would ask if you have a coating on your tongue? If so it may be Thrush which could explain one or two of your complaints.

I thought I fared better than a lot but even so my taste didn't start to return until my 4th month but really didn't come close to pre Tx normal until 15 months out. I was also as weak as a newborn kitten for at least 4 months post Tx. My thyroid also went bad or at least it was discovered as bad around my 4th month post Tx and I was always cold and then I would wake up in a pool of sweat after sleeping. As Markus, AKA should be Man in Red said, our bodies are so far off our pre Tx norm post Tx that really anything might be screwed up. Simple blood test will answer the thyroid question and if it's gone south a simple pill will take care of it.

OK now the good news!!! All of these initial post Tx problems will most likely be HISTORY in a year or 2 so just hang tough and your body will do the rest.

Ditto with what everyone said...everybody is slightly different. I finished tx Nov 4th and right now I have about 40 or 50% of my taste back. Some food textures make me stay away and I cannot handle anything spicy even black pepper. My energy level is really improving and I feel a lot better even from last week. It takes time.

I am seven weeks out IMRT. Everthing tastes like salt. LOTS of salt! Water, my own saliva, I can't tolerate sweets and anything already salted is really bad. I think you guys have talked about the salt taste before and I wondered if this too shall pass?

I had the salty taste problem also. I think it is because salt is the ONLY taste we had at the time. As other tastes come back the saltiness will die down. It's been to long for me to remember exactly when, but I think it was about 4 months when most of my taste was back except for sweets. I could not tolerate any spice including pepper. Give it time.

Take care,
Eileen

Another DITTO,

For a few months everything tasted like sawdust, dirt or camel puke * snickers *

I even looked forward to chemo because I could taste something when they rinsed my port with saline, nummy!
Coming up on 2 years later, I have my salt and pepper shakers handy. My pallet certainly has changed, I am still avoiding breads, dry stuff and hamburger, but I am eating soild foods, even a good tender steak or truly moist roasted chicken for 95% of my nutrition, just different things than I ate before.

Now, I drove my wife NUTS for many months by going to the store and buying lots of different things to try, one or two bites later, I walk away. Poor gal, hating to see food go to waste, it wound up on hers! Except for the chicken liver soup I was making for a few months.

Tinker with food, if it sounds good, go for it! But for that initial experimenting stage, ya might need a big, hungry dog.

[{;-)

I'm almost 3 years out from initial treatment where I got radiation to the mouth. My tastes have returned except for sweets. Sweets still taste terrible to me. But for a guy who always struggled with his weight, that's not such a bad thing....

For me, the first month after tx everything tasted burnt. Like charcoal, even water had a burnt taste. It was awful. Then came the overly salted taste which was around for a couple more months. The worst one I went thru while my taste recovered was the over spiced phase, that hung around for a long time. Now, Im 1 1/2 yrs post tx and tasting things pretty well.

I was feeling adventurous so took my children to a buffet. Figured I could try a bunch of things to get an idea of what I can and cant eat. I made the mistake of trying chinese lo mein. There is some type of spice in it which burned my mouth so bad. I gulped my chocolate milk, furiously wiped my tongue with napkins and actually ran for more chocolate milk and drank 2 more glasses right there at the beverage station. Oh well, probably gave some people a good laugh. That was about a year ago, I havent been brave enough to retry it, but one day I will.

I'm so glad I re-read these posts. I have been experimenting with pudding this week and I have not been able to find a flavor that taste good. It is really making trying to move up the solid food chain difficult because none of the ones I've made have tasted like they should. I will keep trying and remind the therapist on Friday that it's only been 3 weeks now since my last radiation treatment.

Patty

Hi Christine, your post is funny, because the other day I got hungry,been a while seen I wanted food so I went to a buffet, the food smelled so good, I got everything I loved to eat, and I ate and ate. it tasted good but not like it shouldof, but I was hungry and it had taste. Need less to say I over ate and it all come back up about 6 hours later, The good part I had taste and got to eat, even if I didn't get to keep it......LOL
Anything chocolate is gross and I use to love chocolate milk. after the passd few weeks its one day at a time, at least I'm still here and I can walk for now. Kept getting weaker and got my gp to do lab work, he had me to come back in two weeks for reselts, wasn't good, fell 3 times tring to take a badley needed shower befor doc. he put me in hospital and gave me 2 units of blood and some other stuff, feel a lot better. I go for 3 months check next month, ct, blood, everything. I hate to even go back becase all I could get from them was mouth,and they marked my chart that I was weak and falling, said they didnt do blood work or anything unless you are taking treatments, They should have least told me to go to gp, instead of to use walker. (walker didn't help) I have 4 doctors appointments and 4 test in Feb. sure hope you are feeling better. have a great night,

Hi I have been reading a lot of posts concerning taste but it is usually due to radiation. I have lost taste or feeling on the top of my tongue and had surgery treatment. Since my surgery spicy and certain foods bother my tongue. I have also read that sensitivity to these things is cause for alarm and possible "hot spots" I guess I am wondering if it is possible for the top of the tongue go kinda numb from surgery yet be sensitive as well be caused from surgery? (free flap was part of the proceedure)

The chemo left such a strong metallic taste in my mouth I can't be sure that it was the radiation. My body smelled like a toxic waste dump for several weeks after my last infusion. The stuff literally oozed out of pores. If you are on Cisplatin it has to be flushed out with lots of water. It can damage your kidneys if you are not careful.