Hi Seth, I'm taking care of my dad, who has/had the same type of CA as Michael. He has completed 4 weeks of radiation and 2 chemos. I am in the medical field. My suggestion is to NOT offer things by mouth when nauseated as this typically sets off more nausea. He can get all of his fluids/nutrition via tube. I got my dad a cute little chapstick holder that he wears around his neck religioulsy and he carries water to keep his mouth moist. My dad is doing fabulously, now that he doesn't try to eat anything. He does swallow H2O and religiously does his swallowing excercies. NOW-in our experience, the moth sores came overnight and we were ill prepared. Meaning, we did not have the Fentanyl Patches and liquid Oxycontin. It took a week to get ahead of the pain.
A trick we use in the hospital for nausea post op is having our patients sniff alcohol pads. Strangely, it works. My dad is 100% better since he decided to exclusively use the PEG. Good luck Seth, you and I are in the same boat. I told Micheal that we are a couple weeks ahead. We have 15 treatments to go!! You 2 are in my thoughts daily.

Hi Seth,

My one suggestion that isn't a repitition of something already said is to encourage Michael to eat yogurt either by itself or mixed in with something--the kind of yogurt with active cultures. Those cultures in his mouth may help prevent thrush when his mouth starts to get dry.

I found very creamy soups, with yogurt, were about the lst thing I could eat before the mouth sores got so bad that everything was via tube.

Please keep posting and let us know how Michael is as time goes on--you are both in my thoughts (I know being te caregiver can be as hard as being the patient sometimes so don't forget to take some time for you in all this).

Hello Seth,

First, Everyone will notice I moved this thread to the "currently in Treatment" Forum because it is true and because this thread is very active and as a result we were missing some new member introduction posts. I hope everyone understands why I did this and continues to keep the information flowing in this thread.

Second, Seth, since radiation tends to make the sense of taste go flat and/or go wacky, it is good to boost the flavor of food with spices that agree with the patient. Not hot spices but flavor spices. You may have to experiment and try different combinations that appeal to the taste. I personally found that onion and garlic was good as well as Mediterranean spices. Almost any creamy soup can be "boosted" with protein powder and shitaki mushrooms are good for several reasons. If you like to make them yourself, there are organic soup stocks pre-made at larger grocery stores packed in cartons like milk. I really liked the free range chicken stock and the cream of mushroom stock. You can add anything you like to these and make really great soups or stews. If you want you can add your own vegetables and run the whole thing through the blender. With a blender you can turn anything into a smooth-swallowing meal. I suggest you not worry about fat and go ahead and add your favorite oil (olive, etc) to each meal you make. The oil adds important calories, helps with swallowing and is an important component in healing.

Hi all...

Glad to be in our new thread home here.

I'll send the new link to my friends and family who like to stay up on the latest too.

Well...I have GREAT NEWS, I think... :-)

As of 9:30 PM, last night ALL NAUSEA dissappeared.

In fact, I had a good night's sleep (after saying a quick thank you prayer:), and only woke a few times, which is unusal for lately.

I have been able to down a little more fluids (averaging a liter of water, milk, etc.) daily since the last chemo infusion.

Had my 4th rad burn today and can already feel some of the wierd effects.

Skin feels tight and warm, like a slight sunburn in spots, and it's awakened my nerves or something.

Here's the current "problem" :

Many might recall my complaint that I could 'feel something growing' in the Right Tonsil bed. Well, it was examined by the 2nd surgeon at Stanford, a premier ENT at Sloan and then again on Tues by the RO. They all agree that it looks like normal "granualized tissue" forming from the surgery, which is of course a relief.

But, the tissue has now started to tickle my gag reflex. I know it sounds crazy, but I've actually gagged a couple of times today, and not from nausea, but from this tissue back there.

So, I've been treating it topically with 2% lido (tiny dab with long Qtip), as opposed to the nurse's recommendation of more Compezine (YUK!). I really don't think that would help, except to make me so groggy and out of it, that I won't know it's happening... (Which may be quite useful down the road a bit)

So, I wanted to know if I'm the only circus freak out there with this weird problem -- misery loves company

Ok, so now I'll deal with the new tissue tickle on my gag reflex, and hopefully this will get better, not worse.

The nurse also said that the nausea departing will likely be temporary, since it usually returns on Days 3 to 5 from last infusion (YUK~!).

At least I got to eat some good foods today.

I can't imagine what the 3rd week and 6th week chemo is going to be like!! With all the mouth sores, pain, etc etc...EEEEkkk...The stuff makes me feel like they are pumping me up with Jet Fuel!!! :p

I have Aquaphor and a soda/salt rinse I'm using a few times a day.

I also gargle with Aloe, and use it in the Gtube to keep it clean. The incision site looks awesome. Very clean, fresh, no more puss or discharge, and it seems to be fine.

So, let's see...I guess everything is as expected except for the gag thing.

Sorry to ramble just wanted to get this out there, and hear how everyone else is doing.

Hugs to all, Michael

Michael --

Does your chemo nurse or MO have any suggestions for controlling the anticipated nausea for your next Cisplatin infusion? There are several newer drugs (which work on serotonin uptake) -- Zofran is one but there are others and not all work for everyone the same way. You might also ask about acupuncture.

For your neck -- try Biafine 3x a day -- Barry puts it on after Radiacare gel or 100% aloe gel -- allows this to dry then slathers on the cream. So far he has not had any burning sensation although certainly expects it to come eventually. When you get out of rad, try putting on cool gel and then the cream, and again at night, again in am and leave on until you shower and leave for hospital.

Glad to hear you can now eat and drink OK -- best of luck, TGIF!

Gail

Whew, I am happy to hear about your break in nausea, my thoughts are with you and Seth.

Hi Gail. As usual, great suggestions.

I'll ask about the Zofran and related meds.

I'm REALLY DREADING the next two chemo rounds, but the fill-in Dr said the Chemo is the least of my troubles comparred to what the Rads are going to do. YUK!

I'm alternating between Chorloseptic and the 2% liodocaine to reduce the gag. Hopefully it won't keep me up at night.

Shawna; what's the latest there?

Seth, tonite I sauteed to a "melt in your mouth" consistancy a medley of peeled yellow squash, zuchinni, garlic and onion in lots of good olive oil. John ate 3 hugh helpings. He can also eat tons of spinich, canned or fresh- steamed, and very creamy mac and cheese. When Michael's nausea is under control, maybe some of these will help him eat. Amy

Ohhhh, Michael. I could ramble on and on about the latest. I just don't want to over-run your thread! My dad finished his 4th week of radiation and 2nd round of chemo. He has no nausea-so at least we have that going for us. I just don't know how in heck I can get his butt to move in with me now!! He lives an hour away from the city-ALONE- and says he's not ready to come here yet. Basically, the tumor is non-palpable. He's on his Fentanyl patch to subdue the pain. That kills me because let's face it--he is very sensitive to narcotics. I want to tell you and Seth that if it gets bad, a break in treatments does wonders. His mouth healed wonderfully in 7 days and his voice was normal. That was good because it showed him that he will heal. But, today after the 20th treatment he sounds like he did when he hit the wall 2 weeks ago.
Please share the patient's perspective. I want to honor his desires as long as possible but I'm worried sick about him.
You 2 are adorable and I look daily for your posts. Soon, you will be able to coach us through the Neck Dissection!
Love and hugs.

Good News: No more nausea since Weds.

Bad News: I'm miserable.

I feel so fatigued. Exhausted. Like breathing is hard work.

I slept ok last night and have rested on and off, but can hardly move.

Nothing tastes even remotely good. All food is bland, and gross. Even plain water tastes like lighter fluid.

My tonsil bed is still making me gag.

I feel like I've been hit by a truck. My neck is tight, the skin on my face and chin feels like plaster.

This all seems so SOON! Only 1 week into treatments?!!?

I can only assume it's the effects of mainly the Cisplatin (low white cells or something)...?

I have hot and cold flashes at the same time, and I feel sore all over, like from the flu.

There is no way I can do this for 8 weeks.