SCC question

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SCC question

by smith3m on Sun Oct 11, 2009 12:00 AM

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I posted here beginning in June as a newbie.  My husband was diagnosed wtih SCC.  Lymphnode was involved and 2 spots outside.  He finished up the 32 rad tx and 7 chemos on Sept 17th.  He still really does not have any taste.  We opted not to have the feeding tube and he did not have a port for the chemo.  All in all, he has done GREAT.  I just want to say thanks for all the info to date.  We found the most useful, practical info on this site.  I have quoted you guys about a hundred times:)

Jim, I wish I had some of that great seafood you talk about from Delaware.  We're about 1 hour north of Atlanta GA and no good seafood here to speak of.

My question is about a drug that someone told us about that might help revive the tast buds.  Anybody out there heard of it?  They couldn't remember the name. 

My husband is 51 years old.  He has lost about 30 lbs.  He is trying hard to make himself eat - even if it does not have any taste.  Besides the name of the drug, we'd appreciate any other ideas or suggestions that you guys found helped you.

smith3m

RE: SCC question

by PopPop on Sun Oct 11, 2009 12:00 AM

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Smith3m,

         The Radiation treatments are accumulative, so we basically " Cook " for several weeks after the last treatment. Each patient reacts differently, but generally start to taste something anywhere from 4-6 weeks after the final treatment.

          Your husband is just about there at the end of the "Cook " stage and hopefully, his taste buds will start to wake up in the very near future. I seem to remember it was around week 5-6 for me. The first thing that I tasted was milk. Then slowly other things, but I still can't taste everything that I once did. I'm okay with that, as long as I can get something down, I'm happy.

           I wasn't given any Drugs to get my taste back nor was any suggested in my case

          My Best to Both of You and Everyone Here

RE: SCC question

by Chrismd on Sun Oct 11, 2009 12:00 AM

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Hi smith3m,

You didn't say what your husband ate (or drank) during treatment.

Anyway, it is apparent that however he sustained himself, he was a little short on calories, hence the weight gain.

Assuming he could tolerate what he was eating, I suggest he at least keep that up, but add more to get his calorie intake up to start gaining weight.

I ate eggbeater omelets with ham and cheese, drank 2 Boost Plus, and had tea with honey for 3 meals a day throughout treatment.  I found this to be tolerable (not a joy by any means).  I also got the calories I needed.

About 4 weeks post treatment I was able to eat low amounts of real food, but it was not easy for a while.

So from my experience, bland with lots of calories works when food is so repulsive.

Best wishs,

Chris

RE: SCC question

by D1211 on Mon Oct 12, 2009 12:00 AM

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On 10/11/2009 smith3m wrote:

I posted here beginning in June as a newbie.  My husband was diagnosed wtih SCC.  Lymphnode was involved and 2 spots outside.  He finished up the 32 rad tx and 7 chemos on Sept 17th.  He still really does not have any taste.  We opted not to have the feeding tube and he did not have a port for the chemo.  All in all, he has done GREAT.  I just want to say thanks for all the info to date.  We found the most useful, practical info on this site.  I have quoted you guys about a hundred times:)

Jim, I wish I had some of that great seafood you talk about from Delaware.  We're about 1 hour north of Atlanta GA and no good seafood here to speak of.

My question is about a drug that someone told us about that might help revive the tast buds.  Anybody out there heard of it?  They couldn't remember the name. 

My husband is 51 years old.  He has lost about 30 lbs.  He is trying hard to make himself eat - even if it does not have any taste.  Besides the name of the drug, we'd appreciate any other ideas or suggestions that you guys found helped you.

smith3m


Hello,

I was never told of any drugs to restore taste buds.  Some people have suggested lemon drops (if I recall correctly) you might want to check old posts.

There is an old article out there from a medical journal that suggests that anti-allergy drugs-seem to improve the senses of taste and smell. Again, just information no personal knowledge. 

Hope this helps.  Best, Debra

RE: SCC question

by Proxielocks on Mon Oct 12, 2009 12:00 AM

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Sorry I wish I knew of the drug also. My husband finish 35 radiation & 3 chemo treatments in April. He chose the PEG tube because he was dropping weight fast and he could not eat any kind of food. He had throat cancer and had gone to the lumph nodes. He is still on the peg tube but he is beginning to eat but he has no taste buds at all. They may come back, and they may not. His PET scan came back showing that he still has activity in the lower part of his throat. He is scheduled for a neck dissection on Nov. 5th. This has been a very difficult year. Being the only caregiver has been very stressful these last 10 months.

RE: SCC question

by smith3m on Tue Oct 13, 2009 12:00 AM

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On 10/12/2009 Proxielocks wrote:

Sorry I wish I knew of the drug also. My husband finish 35 radiation & 3 chemo treatments in April. He chose the PEG tube because he was dropping weight fast and he could not eat any kind of food. He had throat cancer and had gone to the lumph nodes. He is still on the peg tube but he is beginning to eat but he has no taste buds at all. They may come back, and they may not. His PET scan came back showing that he still has activity in the lower part of his throat. He is scheduled for a neck dissection on Nov. 5th. This has been a very difficult year. Being the only caregiver has been very stressful these last 10 months.

I am sorry about your husband.  I am the only caregiver for my husband and we also have a 13 year old son.  It has been stressful.  Keep watching the board, someone may know the name of the drug.  I'm not sure it will help, but right now we are willing to try anything.

RE: SCC question

by Pauldbld on Tue Oct 13, 2009 12:00 AM

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Hi smith3m,

There have been some conflicting results using a Zinc supplement to restore taste in cancer patients.

Another study with mixed results is the use of anti-allergy meds.

There are ongoing studies using drugs derived from marihuana such as Marinol and Dronabinol. Marinol is used to increase appetite in chemo patients and has shown some results in restoring taste functions also.

You may want to run this info past your ENT and Oncologist to see if they have anything significant to add.

My taste has never returned to 100% and with no saliva I doubt it ever will. Now four years out I am about 80% back in regard to taste. Things that used to knock my socks off are just okay now and things that I totally hated before are palatable. There are some disappointments when you have a taste for what used to be one of your favorite foods and when you try it, the taste is not what you remember. On the other hand there are joyous moments when you find something that you enjoy very much. I think what was lost must be redeveloped over time.

Paul   

RE: SCC question

by rick51 on Wed Oct 14, 2009 12:00 AM

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I had no peg tube, lost 30 lbs. and 18mos later have put 35 back on! I know have to diet!! It'll come back, be patient.

Rick

 

RE: SCC question

by Nana56 on Wed Oct 14, 2009 12:00 AM

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Hi,

 As everyone says, everyone is different. Can't recall the name of the drug. I'm about 1 hour north of Atlanta also, I'm almost 1 year out from my last radiation treatment for base of tongue, had a peg tube lost 40 pounds and I gained 3 pounds back. Still difficult to eat meats, mostly try to stay with soft foods. My taste buds slowly returned but nothing tastes like it use to. Eating dosen't bother me like the everyday pain in my jaw and neck. I wish you the best.

Tracey

RE: SCC question

by BeckyCancerFree on Fri Oct 16, 2009 12:00 AM

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I was told to try zinc lozenges but couldn't tolerate them because of being so dry. Gradually, with time, some taste has returned. It's not as strong as it used to be and most things taste different and some not nearly as good - but all in all it has become very tolerable and I have mainly been able to get used to the new normal. But the timeline is individual for everyone and likely to be much slower than you'd like, and you never arrive back at the state in which you started. Hang in there - it gets better.
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