Hi. John has 2 more chemo treatments and 11 more radiation treatments. Things are really, really rough. He is nauseas constantly. He is taking both Zofran and Compazine, not at the same time, but they really aren't doing a whole lot. He is still drinking water but stopped all food intake by mouth about a week ago. Because he is so nauseas constantly, he isn't using the feeding tube like he should. He is only getting in 2 -3 cans of Osmolite a day.

Right now the biggest problem is gagging. He can no longer talk or he gags and throws up. I assume this is from the mucus and radiating that area? He has lost his facial hair and the hair at the base of his neck. The hair on his head is really thinning out.

It's so hard watching him go through this. He never complains, just takes things as they come. I can't even imagine what is going through his head. He isn't really good at communicating even when he can talk.

John is using the baking soda/salt/water rinse for his mouth along with the Biotene mouthwash. Any suggestions regarding the not being able to talk and the gagging? Thanks for listening. Sometimes I just feel really alone with all of this. People who aren't aware of this type of cancer don't understand the terrible side effects from treatment. Wanda

Wanda,

Forget about the hair thing. That's 100% normal and is in no way life altering nor life threatening.

Unfortunately there is no magic wand and since we can all respond differently to the same Tx and the same meds you just have to explore as many different options with your docs and lets hope they are experienced enough to have many suggestions to try.

I couldn't find really anything that stopped my nausea and I didn't have a Peg and I would even lie to my wife about how much I consumed while she was at work just so she wouldn't make me swallow more. I lost a ton of weight that I didn't have to loose and ended up in the ER 3 times for fluids. Now could I have made it easier on myself? YOU BET and that would have been to consume the recommended amount of water and "food" each and every day. Our body is under attack from the cancer and the treatment and therefore is under a great deal of stress both physically and mentally and it needs all the fuel we can give it to have a fighting chance. It's like a snowball rolling down a hill; if he doesn't give his body the fuel it needs he will only allow more complications to pile up on top of an already bad situation and believe me things can get much much worse than what he is going through. Towards the end of my Tx I abandoned all my pain meds because of the nausea they caused and would stand over my sink after swallowing water or food and close my eyes and hold my mouth shut until the gag reflex stopped. My gag reflex continued at least a month after all my Tx's had stopped.

Please somehow try to get his pain and nausea better controlled and please get the hydration and food in him any way you can.

If you can get him to call me please PM me and I'll give you my contact numbers. Maybe he will listen to a vet that has been there done it.

Wanda,
I'm so sorry you are having to go through this. It's frustrating and exhausting. There is so much pressure being the caregiver. You feel like you have to be constantly vigilant and make sure everything possible is being done, plus watching your husband suffer. We learn the true meaning of the words" for better or worse."

Ask your doctors about Ativan. This drug worked quite well for Richard. He would take the Zofran and Ativan together or space them out a bit from one another. The Ativan relaxes you and helps with the nausea. It helped Richard to sleep. The Compazine did NOTHING. We were lucky in that Richard was able to consume a couple of 700 calorie shakes a day. Then we supplemented with the cans. I counted calories every day to make sure he was getting enough. He lost ten pounds and those were extra that he gained before treatment started. Please send me a PM if you want to "chat." Take care as best you can... Geri

Wanda

Im sorry to hear your husband is struggling so much. Right now he is going into the worst phase of treatments. The end and first 2 weeks after are awful. I also lost my ability to talk and used a dry erase board for about 3 wks. No matter how bad it gets, try to have him still swallow water and stretch his mouth open wide. These things are difficult to fix if he loses that ability.

I think I used Zofran and Emend (Amend) for nasuea. Compazine didnt help me, it made me sick. Magic mouthwash will help numb his mouth. I hope you find something strong to help with the nasuea.

Hang in there its almost over and it will get easier in a couple weeks.

Wanda - my husband's experience was pretty much the same as what Geri wrote about, in terms of what drugs worked. Regarding nutrition, if John is not already using a gravity feed bag, then please talk to your dietician immediately. This was a lifesaver for my husband. David is right - your husband needs fuel to both fight the cancer AND to recover from the side effects of the treatment. Best of luck to you both. It really will get better!