Has anyone on here had tomotherapy? If you have, I have a question for you. Last week when we met with the RO he said the side effects is as bad as it is going to get. (after 16 of 33 treatments) Was this your experience?
Currently, my husband is having a really hard time getting any type of nutrition. He has a sensation in the back of his throat that is triggering his gag reflex. I realize this is separate from his stomach, but if he eats and it he gags everything comes up. Yesterday he had 3 boosts and probably threw up equal to one or two not sure I didn't watch. It is now almost 10am and he has not had anything to eat since lastnight around 7pm. The drugs he is taking is Kytril 2xday, decadron 2xday, compazine every 4-6 hours Ativan every 6 hours, and Zantec 2xday. Any suggestions would be greatly appreciated. If we keep up at this rate, he will be heading for a hospital stay.
Thanks for your help
Valerie

Hi Valerie.
it is a brave doctor who makes a sweeping statement like that.
Many people on these boards never had any side affects until the last seven treatments,and some started with side effects from day one and just got worse throughout the treatment and for some time after it had finished. bottom line valerie is there are no hard and fast rules about side effects,you take them day to day,but it certainly sounds like your hubby would benfit from a peg tube to help him maintain his nutrition.

love liz

Liz,
I thought the same thing as well about his statement. My husband is taking it as truth. Whatever!!! I am at wits end about his nutrition. He has a tube and because of the gag reflex, I can't get him to eat. He hates the tast of the osmolite which is the insurance paid for formula, so I buy Boost and Ensure at the store. I am so frustrated. I told him yesterday to suck it up and eat. That didn't go over too well. I think I am going to go ahead and order what they call a kangaroo pump to use for night time feeding and tell him he has to do it.
Liz, I read your post this morning and was in tears. You are a brave and strong woman. Thank you for sharing such personal, painfull and sensitive issues with people who care and can learn from what you have gone through.
Valerie

Valerie, your [his Ins. co.] should pay for whatever peg nutrition your husband can tolerate- that is if YOU get tough enough. Are you saying he gags when using the peg tube? Maybe he is trying to take too much in at once- or the nutrition is too cold for his stomach- we always had to do room temp or warmer peg tug tube fedings. Also, he is on a very strong mix of medications and it is likely that they are not helping his stomach situation. Most times, this is a trial and error, day to day process. It can be very frustrating, but Don't give up. Keep experimenting with different things, and ask if all those drugs are really helping instead of hindering. Good luck and lots of patience to you both. Amy in the Ozarks

Amy, maybe I should try to just give him the zofran, then if that isn't enough add compazine and then another. Maybe you are right that there is just too much meds going in. He says his pain is at about a 6 but he doesn't want to take any more meds. Maybe if the Zofran controls the nausea he will take something for pain. I think I will try to warm up the nutrition a little. We will be getting a kangaroo pump tomorrow and we will start feeding at night while sleeping. As of 8:30 pm he has had one boost and no water. We will be getting IV fluids tomorrow. Thanks for your help.
Valerie

Valerie, I had the same sensation (kind of a dryness but it also felt like something was stuck) that triggered my gag reflex a lot during the end of my treatment and (here and there, though it got less common) for months after. Has he been given any kind of "magic mouthwash" that he can swallow? I found that often helped get rid of that feeling.

I managed to do tube feeding anyway by basically trying to pour something down the tube whenever I wasn't feeling like I was gagging. Sometimes it came back up, but I got enough down to get some calories. He has to keep trying to do the same.

By the way, this is gross but needs to be said--if he has a full stomach and the gags turn into stomach heaves, if he uncaps the tube and puts it in a bowl the stuff in his stomach will come out that way and he will vomit less through his (probably sore) throat and mouth. The Peg tube works two ways!

Nelie

Valerie,
Did the install a PEG tube in your husbands stomach?? I've had one in for three weeks now and I don't "taste" antything. Like your husband I got the gag reflex and the everything is salt taste. I'm doing 2500 cals a day now and feel good except for my mouth.
I've done 28 general TOMO rides as of today and have 10 "focused trips startin on Monday.
The PEG tube was a god send for me.
Best wishes,
Gary

Hi, Valerie, Warming the peg tube nutrition and slowing down the amount that goes in at one time should help. Also, experimenting with the pain meds should help. I would be comcerned about the lack of h2o intake. Have you tried unflavored Pedialyte between feedings? Buy it in the Children's section of the gro store- it will help keep him hydrated. He can do 6 to 8 oz at a time- of and on all day long. Good luck- Amy in the Ozarks

Valerie,
either the doctor is a perpetual optimist or a flat out liar. In my 5 years here I nave never heard of anyone's side effects peaking in the middle of treatment. Typically it is a few weeks POST Tx that the side effects peak. My experience with Cisplatin is that the side effects got progressively worse, to the point that they abandoned the 3rd treatment (it surely would have killed me).

About the insurance paying for nutrional supplements - they will ONLY if it is prescribed (Like Jevity). They will not pay for OTC stuff like Ensure, etc.

Like others have suggested here, slow, drip feeding, possibly at night might help. Hydration is a very big issue - 2-3 liters of water a day are required, especially since he is on Cisplatin. His kidneys can be permanently damaged by inadequate hydration and if he vomits he will have to start over abd replace the fluids lost. You should keep a log.

Compazine I used as a last resort, in suppository form, and it was marginally effective. Zofran works the best, but only 60% of the time. There are other anti-emetics as potent as Zonfran -grill your MO about it. Have a variety of anti-emetics to try. Zofran is only effective for 5 or so days at a time anyway.

If he needs hydration make an appointment with infusion have it done there - he will immediately begin to feel better (and it's a LOT faster and more comfortable than the ER). Most of us struggled with nausea. I puked so much I polished my teeth like glass from the stomach acid. It's tough to watch but to be expected. Cisplatin is some nasty sh*t.

Try this too, see if he can get his throat cleared BEFORE ingesting anything, especially in the morning. Suction machines, baking soda and salt (if he can tolerate the salt) rinses are other possibilities as well. Try a warm water rinse after a swish & spit of some "pink magic".

You just have to experiment and take it one day at a time. My days ranged from fair to horrific.

Watch for those constipation issues as well, they can also cause nausea when homeostatis is backed up.

Tomotherapy is nothing more than IMRT with adjustments made by CT scans (done adjunctively). So searching postings about IMRT should answer most of your questions about that.

Wow, thanks for all your help. I think this treatment is hell on earth. It's hard to see someone go through it and I can't even imagine how awful it is for him. We have tried everything from all the rinses to suction machine. Right now he is mostly using hydrogen peroxide/water rince and the suction machine. Since the 29th of Oct he has had about 8 boosts at the most. He has been hydrated 3 times last week and we plan on another visit tomorrow. I think we are going to have to go to TPN feeding, which is feeding through a pic line. I just don't think he will be able to eat any other way.
I agree with you Gary about what the MO said about the tomo therapy side effects. I think my husband would agree at this point. He is barely verbal now and cannot swallow anything by mouth. He hasn't taken any pain meds due to no food and it will make him more sick. He just can't get himself to eat. Very frustrating for me but I am sure when they weigh him tomorrow there will have to be a decision made to either hospitalize or start TPN.
Thanks for all the help.
Valerie