I finished radiation and chemo treatments 3 weeks ago for SQC Cancer at the base of my tongue. Two questions for those survivore with similar cancer.

1) Did your tastebuds ever come back and if yes how long after treatment?

2) I seeme to have lost my sex drive and am curious from my male friends out there if they experienced similar, how long before it came back and if not what did you do about it.

Thanks for your comments.

Taste buds and sex drive in the same sentence oh my!

1. Yes, gradually over time - complete recovery in about 6 months. Salt taste was first - sweets were last.

2. Same as #1. Wife says popsicle stick & duct tape in the interim.

Terry, WOW I thought I would never see those two together. My taste buds came back within a year after the radaition stopped. It was so awsume too, to finally eat things that didn't taste like metal or a pure can of salt. Everything did to me. Even water. I would choke and gag for long periods of time just to take a sip of water. I will never forget all that. As far as sex goes. What can I tell you. It has never been the same for me. I had a huge drive before and almost nothing now. I hate it but not at lot I can do about it. It has been a major adjustment for me and my honey. We have our love and our commiment to each other. He had a heart attack after I was diagnosed which affected him as well. So not only was it me, now he had found difficulty as well. We are loving each other is so many different ways, always have, thank the LORD for REAL LOVE.....I pray this is what we all have in our lives when it comes to CANCER or any other illness...Because this is what it is going to take to make it thru all this..Always, Miss Vicki

The taste is coming back gradually, but steadily. I'm almost 6 months post treatment. Chemo definitely knocks the wood out of a guy! Everythings back to normal now though! Seems like it happened a few weeks out from treatment. Probably a combination of the chemo being neutralized & nutrition levels coming back up. May the force be with you! I remember my wife commenting that I seemed "bigger", but I think it was just in relation to my skinny body! Can you imagine chemo being marketed as the next vitality/enlargement drug?! I don't think so!

This one is fast approaching the "More than I need to know" level!

I had radiation only and my taste started to come back at 3 mos and was pretty much back at 6 mos. Although I am 8 mos post now and I would say in general my taste is 75%. Some things a lot less. Sweets@50%, garlic my favorite I still can't taste. Tomato sauce tastes more spicy when it use to taste sweet?
My sex drive was reduced to nothing during treatment. It has recovered a little since treatment but doesn't seem to be as strong as before the treatment.

Gary...maybe it`s just me but, popsicle sticks and duct tape ??? I think I MUST have missed something..somewhere.
Now, if I could just stop laughing long enough to explain this thread to Pete !

Boy I needed that..
Marica

Duct tape and a popcicle stick. Your killing me. Good stuff.

Taste came back pretty quick. Salt first sweet later just like everyone else.

Sex drive? What sex drive?

As a 42 YO Male and the father of 5 I can honestly say I had a very good active sex drive/life prior to this mess. I am 9 months post now and just starting to feel like my old self.

The anti depressants have quite a bit to do with it also. I dont know about any of you all but ya might as well just have cut it off with the Anti depressants. No worky.

I am glad I took them, they really helped with the situation, but I am glad I am off and back to normal now. My poor wife. Now I am trying to make up for lost time. Typical guy.

Take care everybody.

Gary,

I am such an idiot.........I just figured it out. The tape goes over your mouth, but what does she do with the popsicle stick?

Glenn

OH MAN I'm gonna bust a gut!

Now c'mon Gary...don't keep us in suspense...

You may have stumbled on something we can all use but you have to give us the technique first.

As far as taste, I still go through some interesting changes from day to day and chocolate still tastes a little strange but I still eat it.

Ed

Ed,

Me too. Chocolate still doesnt really taste that good, sour. But I still managed to neck down an enormous amount of my kids Halloween candy. And let me tell ya, when you have 4 active trick or treaters, you score big on the candy. Real big.

Have a great weekend everybody.

Robert

Hi Guys, what is it with the chocolate taste? It still doesn't taste right to me either, oh, well, I am still gonna keep trying it!! SMILE!

Carol L,

It does take awhile, but eventually I found the taste for chocolate returned completely. In fact, all this talk about it is going to send me into the dining room to raid the leftover Halloween candy basket -- right now.

Cathy

Yet another use for duct tape....

Thanks Cathy, I tried a butterfinger, one of my all time fav candy bars and it tasted pretty darn good!!! SMILE!!I am only afraid to eat too many cuz of my deteriorating teeth situation! But hey, once in a while is fine!!!Satisfies the urge, Take Care and God Bless!

deteriorating teeth as well due to radiation treatments in May of 2003 and xerostomia...........I can't stand the taste of soda pop yet......any idea if I'll ever get the great taste again?

This is a post I could never share with Harry. It was very funny and I always need the laughter but you must understand that this was one of his biggest hangups about the treatments.

He said that if we didn't really have a marriage when this was done then what was the point?

I cannot tell him that his sex drive will be stumped for a while and maybe longer. He would give up now.

This is one of those guy things I think I will never understand. It is not that important to me but he makes a big deal out of it.

By the way... where did the popcicle stick instructions go? :-)

Cindy

Terry, you sure know how to get everyone's attention. Hey - wouldn't that be a GREAT book title!?! Meanwhile, between Mark's post to Ed in another forum, and this, my company DEFINITELY knows I'm not working right now.

And you people are all freaking me out - everytime I start wondering "is it just me", one of these posts come up and answers my questions.

I was lucky with my taste buds, that came back quick. I lost it around this time last year (between eating issues from surgery and then radiation), when the Cadberry Cream Eggs were out. I LOVE those babies, and was so sad that I couldn't eat them. I had one for the first time this year, and was pretty close to tears. Had to pull over to finish it. The people in the store were looking out going "What the hell is that woman doing to that egg??" Yeah. You think I'm joking. LOL.

As for the other....I am 9 months out of treatment (1 year since diagnosis), going <tap, tap, tap> "Is this thing on???" I'm not sure "sex drive" is in my dictionary anymore. Right now I'm looking at men going "huh. Not doing it for me." I'm looking at women going "Well, treatment didn't send me that way either" and then wondering "Okay. Now what?" Glad to hear it'll be back. I'll have to stick to eating the eggs for now.

Sabrina

Gary I just have to say...you are so funny! Now I had always heard that as long as you have duct tape and bungee cords....you can fix anything...I will have to add popsickle sticks to that list! Before my husband Ron had radiation, they were doing lazer treatments on his throat to remove the pre-cancerous cells. They would knock him out to do the procedure, and one time the anesthesiologist (sp) asked Ron what kind of pain meds he had been taking (mind you they had given him something to relax him so he was kind of loopy)...he responded Viagra...(but he meant Vicodine). I explained to the Doctor what he meant to say, but you should have seen the look on that doctors face, it was priceless. We still laugh about it.

Shelley

OK Shelley, was that Viagra with or without the popsicle stick???

The chocolate still tastes funny but the silly man I am, I have adapted and learned to love the new funny taste. I'm not sure but I think I remember what it used to taste like and I think I used to like it more...

Destiny, I lived on Dr. Pepper for many weeks when I couldn't eat. When I went to the ER my blood sugar was like 300 or something outrageous and they just about flipped. I had my last soda around December 2003 and when I tried a Coke the other day, it was awful. I prefer water and have just started drinking it cold again.

Just curious, are you using any flouride trays or toothepaste?

Ed

I have a question........my husband Dan just started drinking water again, and that is going pretty well. He is wanting to try to begin eating soft foods and has tried pudding and jello......both taste awful. Any suggestions? I see where some of you have said that salty first, then sweet.......but I'm not sure if you meant that is the flavor sensation returning OR what was tasting tolerable. Please give me some suggestions......b/c I'm trying desperately to find something that may taste reasonably good to him, while he is still wiling to "try" and eat. Thanks for any info......
Michelle G.
PS: I thought about popsicles, but neither Dan nor I would know what to do with all the leftover sticks! :p

Hi Ed!

Sorry to respond so late...the Viagra was WITHOUT the popsickle stick...LOL....

Have a great weekend,

Shelley

Michelle,
yes, patience! It takes time for the taste buds to come back and they come back gradually over a period of time. Also, experimentation. Keep trying different foods and flavors. My theory is that since too much or too little salt is important to the body is why that taste sensation comes back earlier. Many grocery store delis and soup counters will allow you to try small samples.

Oh my God--no one warned me how funny this topic was--I spit green tea all over the keyboard! Popsicle sticks. Now I've heard everything.

I came here with a question--when you lose your sense of taste, does your sense of smell go too?

My rad. oncologist told me I could expect my sense of taste to never be the same again, if it comes back at all (I think he's got a scorched earth policy planned for my tongue) and I *think* I have reached the point where I can deal with that (just so long as the cancer never comes back either). I'm eating all sorts of stuff I love to give the taste buds a good send-off.

But I would miss my sense of smell much more and if it might go permanently I just want to know so I can try to get some lilacs in the house in the next week or so.......

Nelie,

It's been a long time, so my memory may not be accurate on this, but I don't think I lost my sense of smell. During radiation, I seem to recall smelling food aromas that I knew should be creating hunger pangs, but eating was such an abysmal (and painful) chore at that point that I had no desire to eat.

I'm really surprised that your radiation oncologist said your taste buds would never be the same again. For me it took quite a few months, but mine eventually got back to what I would call normal -- in other words, they seem to have the same likes and dislikes as before cancer. (By the way, the day before I had my surgery, I decided to give my mouth a "sendoff" by going to the local deli and getting a tongue sandwich -- PATHETIC?!)

Cathy

Hi Nelie,
I'm surprised also that your doctor told you that, especially with you having IMRT, which is easier then field radiation. I had field radiation and my taste is back to normal. The texture of some foods is off but the taste is good. It took awhile but did happen.
Minnie

Oh Cathy, a tongue sandwich! that cracks me up

Maybe I will have to ask him about why he said that about losing much of my sense of taste again. If I can ever get a hold of him. I am NOT happy with how we are communicating right now but this is probably what I should have expected when I decided to stay here at this very new extension of Roswell Park instead of going elsewhere.

It's good news about the sense of smell though...

Nelie, my sense of smell is never affected and I have never been told by my doctors that in my type of cancer, treatment would affect sense of smell. As for taste buds, I have never lost all of them but after treatment,they are never 100% back to normal in my case, unlike some of the posters who are so lucky to have all the tastes back. I still miss my sweet taste and very often I just imagine how sweet the food tastes. And the smell of the food helps me imagine too.It is good for me since I am diabetic and should not too much sweet food.

Karen.