Hello. My husband was diagnosed with stage III scc with an unknown primary in December. He started chemotherapy (cisplatin every 3 weeks) and radiation (every day, m-f for 7 weeks) on March 4. He is having a lot of pain in his mouth and throat, and will likely need a feeding tube soon--he is losing lots of weight (18 lbs so far). My question is about nausea and memory loss: he followed the oncologist's information to a T in terms of the side effects from cisplatin--days 5-6 were really bad, then on day 11 he got really nauseated again. Does radiation cause nausea? Does either treatment affect memory? He is losing words, and forgetting plans and entire conversations. He has been on the anti-nausea meds, but has been reluctant to take anything stronger than advil for pain.

I never got nauseated but I would bet we have members here that did. Someone will post an answer for you soon. I understand the weight loss tho. I lost 70 lbs but also had to get my teeth pulled and Radiation seed implants in my tongue. Maybe we all get different illnesses or things going wrong from this.

I got very ill from cisplatin about 10 days after each dose. I couldnt even take a sip of water and keep it down. As far as I know, radiation doesnt cause nasuea. The combo of radiation and chemo make for some pretty bad mouth sores. I think its the chemo that also affects memory but dont think thats been scientifically proven yet. If the pain gets bad, and it probably will then your husband will need something stronger. There is no reason to suffer with pain, it does not help the healing.

Treatments sure can be rough. Hang in there it will be difficult but it can be done.

Cisplatin made me sick too. It was precisely 6 days after the infusion and only lasted half an hour. I never threw up and I am pretty sure that the nausea was mostly due to me not taking the anti nausea meds after a couple of days...
Once I was off cisplatin there were no more nausea problems at all and I stopped taking any anti nausea drugs. So (at least for me) radiation did not do it.

My memory is not crystal clear for this period either but there may also be a psychological component to this in my case.
********If he is in pain the he needs adequate pain management !! People with oral cancer are on fentanyl patches and or Morphine/Oxycodone etc. I would venture the guess that excessive pain does not help memory either.
Advil? Are you serious? What does his RO/MO say? Ne needs something better than that. Also you might want to consider viscous lidocaine** for short term relief (for eating/speaking). This allowed my to titrate the use of the strong stuff.

The treatment is miserable and will get worse, but there is an end to this; do not loose sight of the long term goals. Before you know it you will have the luxury of worrying about all kinds of silly things again.

M

** I am beginning to sound like I am on a crusade. I am not. It helped me and I am surprised it is not more used.

My treatment was similar to your husbands, 3 rounds of Cisplatin and 35+ radiation treatments. I took time released oxycodone, anti-nausea meds and a sleep aid. I did have issues with getting sick a lot, I like Jim lost 70lbs through treatment.

The memory loss was the big kicker for me though, I didn't lose just conversations or plans, I lost whole days and weeks. There was a picture of me in the local paper with a group of volunteers for a fund raising event that I don't recall at all. In fact my memory is very fragmented from the start of the treatments and there are several instances like the one above.

I was also having issues sleeping and then having reactions to the sleeep aids I was prescribed. I was found several times outside hunting "ninjas", almost burning the house down at 3am cooking eggs when I hadn't been able to eat orally for months. I refused to take them any longer when my wife told me that I had put her in a rear naked choke hold one night during a "ninja" hunt. Months later when I was out of treatment, still on the pain meds though I was still having severe insomnia so I decided to take an ambien and again had an episode so I've totally written off sleep aides.

I am surprised at a few things with your husband though, pain meds are a necessary and I'm sorry but advil? Docs threw the book at me to control my pain and we finally have it tackled with the fentanyl duralgesic patches and oxycodone for breakthrough pain. Now opiods can cause nausea but I'll take an upset stomach over pain anyday. I'm also suprised that they haven't already got a peg tube in for your husband. I found that when I was fed via the tube I got nausea less then when I could drink my ensure, but that's probably just a personal thing for me. Now that I'm trying to rebuild my emaciated body, I can see why it is important to maintain the weight you have.

Good luck, keep you chin up and my thoughts are with you two.

Eric

Eric, we both lost memory it seems. I lost at least 9 months preceding my tongue implants and still have no clue what went on. Not Christmas, thanksgiving nor anything back to sometime in the summer of 07. As for the goofy things that occured at nite, I did things but sure as heck don't remember. it was ambien my PCP prescribed. I tossed it when I figured out my problem and have been fine since. It made me laugh at where I found clothing and things.

Almost 3 years out and I still think I have memory issues due to my Tx. Hard to tell since I'm also 3 years older so I'm pretty sure that may play a role as well.

Thank you for telling me about your experience. I am working on getting him to manage the pain with oxycodone, but he wants to be alert for the portions of the day he could spend with the kids (we have a 12 year old, a 10 year old, and a 7 year old). He has his second chemo treatment today, and the PEG inserted tomorrow. I am hoping this will slow down his weight loss--I think some of his nausea is because of dehydration and low blood sugar, so hopefully the PEG will help.
I'm glad to hear that memory loss is something others have experienced. I was beginning to worry about a spread to the brain. I'll stop worrying about that for now...

How long did it take for you to regain salivary function/taste buds/ the ability to eat orally?

The liquid oxycodon is easy, it is pretty fast acting too. The amount needed can be readily adjusted. Reactions to it are individual, at least with the amount I took it did not impair me.
Good luck with the PEG tube, make sure he uses it! That is what it is there for.
Re recovery of taste/saliva. That may never come fully back, which of course is a pity but in the big picture......

M

Ask you doctor about "Magic" mouth wash. It pretty much numbs your mouth for awhile so you can eat and have some temporary relief from the pain.
Sandy

Regaining salivia is very different for everyone. Mine was almost normal at about 4 months post tx. Im one of the very few lucky ones who do not need to carry a water bottle.

As far as taste goes, it was abotu the same around the 4 month point I was starting to come around and things tasted better. For several months everything tasted burnt, like ashes even water.

Once taste buds are gone I dont think they come back. This is why it varies so much for everyone. Some people have oral cancer on their tongue while others like me have it in their cheek or on their gums. This makes a huge difference as to where the radiation is focused which also will determine what damage is done. We all get scatter radiation, but the area that is the focal point is what will take the hardest hit.

Make sure your husband stretches his mouth open as wide as possible several times per day. He also needs to keep swallowing even with having the PEG tube. These things will help him avoid bigger problems down the road and make recovery so much harder.

Best of luck with the PEG tube tomorrow. He will be sore for a couple days. Please ask if you need any PEG tips. It took alot of trial and error before I was successful with mine.

Thank you! The sad irony for my husband is that he is a chef--I really hope he can enjoy food again. It is so helpful to hear from people who have done what he is doing. Thank you thank you thank you.

I did, and I am picking up the prescription now. Thank you!

Those questions and their answers are probably going to be unique to the responder but here's my response.

Taste and saliva seem to return hand n hand meaning as my saliva improved so did my taste. I "noticed" improvements in months 4, 5, 15 (big improvement) and 24. Nothing seems to have changed since then.

I was drinking orally the whole way through (no Peg) and I started to eat solid food in my 3rd week post Tx.

I know mine will never be back , Taste or saliva. One Dr had the decency to tell me I was right after I said I don't think those 2 will ever return. All he said was you are right Jim. What we remove is gone forever unless a miracle occurs.

Taste came back for me several months after treatment, saliva won't, I have to carry water everywhere. It's been a year since treatment and 9 months since surgery and I'm just now able to eat some foods however difficult as it may be. I still use PEG for liquid pain meds when needed and I still drink Ensure Plus for most of my nutrition.

Jim, our experience is very similar to each others...both lost 70lbs, memory loss and bad reaction to ambien, very interesting

Yep Eric, we seem to have traveled the same highway system. LOL Too may bumps on our highways. Have a great day Eric.

Hi, this is my first time on the boards and my first post!
My husband finished rad/chemo on 2/22/09 and although he still has the peg he can eat pretty darn well...I'm so proud of him! Can even take his pills orally.
He says he never really lost his taste buds but the saliva was severly impacted and on the other hand he had horrendous mucositis so although his mouth was never really dry it was nasty tasting and smelling! That's pretty much subsided now however he goes in for a nd on Monday which I'm really worried about and we'll see how serious it will be.
I wonder, however, about his memory. He's only 61 but there's some things he just doesn't 'get' anymore (like asking me which direction the faucet faces for the cold water?) and sometimes I think his comprehensive skills have slowed...we'll just have to see over time!

Jeani,

Welcome and I too didn't find this site until after all the fun was over!!

I was 58 at Dx and I'm now 61 and we have discussed the memory issue often in the 3 years I've been here and really, like everything else associated with this cancer and it's Tx, it just depends on the individual.

Speaking for myself, I felt like my memory was affected, especially short term memory post Tx. It may very well have been what we refer to as Chemo Brain or the mental affects of the whole ordeal or both, who knows for sure? Today I feel as if my memory is not like it was pre Tx but again I'm 3 years older so who knows again?

None of this is anything more than a tiny nuisance except if I forget to get something I PROMISED MY WIFE I WOULDN'T FORGET! She used to take my side affects into consideration but she's a little quicker to get upset now.

Hello,

My husband is on day #17 of radiation and has had his 2nd chemo last Thurs the 2nd of July. He isn't on any heavy pain meds except Tylenol occasionally. He definitely can't remember things said or what he was doing. Seems sporadic and his short term memory affected. He is really tired and has been sleeping non- stop since this 2nd chemo treatment. It could be b/c he is so tired that he can't remember anything. I have to watch him b/c before I went to work last night. He wanted meds for constipation. We had one med that wasn't what he should take. We discussed it and I said I would get a diff. med in the morning. So it takes it anyway and was up all night with the runs and completely dehydrated in the morning. Just what he needed! He had no recollections of our conversations not to take the meds. He also felt his memory was compromised after the last chemo treatment. So I guess it is different for each person but for us the memory loss is very noticeable. He is also very nauseated the first round of chemo but the 2nd round he adjusted his anti-nausea meds and has no problem with that.

If you do a search here on the boards for "chemo brain" (what posters started calling it) it is a pretty well documented experience among many of the posters here. No one has suggested that it persists after the end of treatment, and the body's return to normal without the chemo drugs in it.

Radiation definitely causes people to become very lethargic. I slept 12-15 hours a day during my treatments. I wouldn't be concerned about that, as in my opinion, it is time for your body to recuperate from the onslaught, and it was that many hours that I wasn't in physical or emotional pain. I also wasn't making everyone around me nuts with my bitching about all that was happening to me.....

I had (still have if you listen to Margaret Hupe in still cold Wisconsin) chemo brain and I just laid around the bed all day from about my 4th week of Tx until appx 3 weeks post Tx. I couldn't stay focused on anything very long. Hell I couldn't even keep up with Judge Judy! It got so bad that I would sleep, wake up, drink whatever I could, sleep, wake up, drink whatever I could.... you get the picture.

David,

I'm actually quite Grateful he is sleeping a lot of the time. It seems very happy in the dream state. I guess he will be staying in bed for the next few weeks with the occasional trip to th frig to get a drink. I feel like I don't have too much to do except hand him an ensure and put lotion of his neck. Thanks for the confirmation that sleeping is normal at this stage. I thought it was...but good to hear from others (except you still have chemo brain so should I listen to you)? Just kidding? And the teasing goes on....

Vanessa

You said

...I feel like I don't have too much to do except hand him an ensure and put lotion of his neck....

Just wait baby your time is coming!!! You will shortly wish that's all you had to do. I guarantee it. You better rest up now to, enough said.

Okay.... I lied.. kind of... I have enough to do between house,family, work and his care... but I'll brace myself for the next shift in responsibilities!!!! Thanks for warning me.. I feel better already... "the calm before the storm"?

Yeah the Perfect Storm.

That, David, is my husbands favorite book!!!!! How appropriate!

All kidding aside. It may get gritty during Tx and if it does you can be the glue that holds him together and keeps him focused on your mutual goal of finishing Tx and winning this war.

3000 cals each and every day.

48 ozs of water each and every day.

stay on top of the pain meds.

You see that he does those 3 things and I guarantee he will fare as best he can and when he does well your job will be easier.

David,

Did you double check your math on those cals and ozs? I just want to make sure the info you are giving Vanessa is 120% correct. (BTW, I was going to stop giving you a hard time about that, but when you dangle the carrot...I can't help myself!)

I think Jeff's amazing, 1/2 way through and no pain meds yet! Soon, he's going to be done.

Vanessa,

David posted awhile back that 20% get through pretty easily, 80% have a horrible, horrible time and the other 20% have a horrible, horrible, horrible, horrible time.

Maybe Jeff's going to be in the first 20%. I don't think fatigue and a little chemo brain counts as horrible, horrible. But, David set the categories and the funky percentages. So, we'll have to see how he weighs in.

By this time in treatment, Dan was horrible, horrible and heading to the horrible, horrible, horrible, horrible.

So, tell Jeff he's doing good! And, then remind him tomorrow because with the chemo brain he might forget you told him.

David,

Thanks for your advice. I promise I will stay on top of it!!!!

Maragaret, I think you like to give David a hard time. With all the humor I manage to deal with the seriousness of this horrible cancer.



To both of you...thank you for your support. I really really appreciate it!
Vanessa

No Margaret LIVES to give me a hard time. I can't wait until the weather up there in Milwaukee warms up so she can go outside and play!!

To set my record straight what I meant to say was I believe 10% breeze through, 10% have a horrible horrible horrible horrible time and the rest or 80% "just" have a horrible time.