I only had two chemos but that's because my WBC was so low when the third was supposed to happen that they couldn't do a third in a way that would have affected radiation (ie. anywhere near on schedule). My RBC was really low too (despite taking Procrit). Chemo was kind of icing on the cake for me, anyway, an extra-aggressive treatment for my stage of cancer, so my MO said it was OK to miss the third.

I think it's important to note in Gail's post that 60% of people have some sort of hearting issue from cisplat. but not all of that is hearing loss. I had ringing in my ears during chemo and on and off for about 6 months after. It's completely gone away now and I don't think my hearing has been permanently affected at all. Still, it's worth discussing with your MO.

Nelie

Last night was really rough for me. Gagging is really kicking my but right now. The phlegm(sp) just keeps coming. Last night I was doing a tube feeding and it was time for the roxinol...no big deal I've done the two before. Well as soon as I swallowed the roxinol everything came up. I think last night was the 1st time I actually felt this treatment was getting to me. I mean I have 14 xrt days left and am getting concerned that I may not be up to the finish.

I thank God for the OCF forums and the people I've met here, it's been a big help.

Tim Stoj

Tim hang in there.

My Dad hated the phlegm also; that was his main issue. It really concerned him when he'd try to force it up. BUT he got threw it!! and so can you! Just keep telling yourself it will get better.

Get a humidifier for your bedroom; this will help a bit.

Get lots of hydration into your tube and if you can't then ask for IV hydration. My Dad had daily IV hydration on the last week of treatment and it helped.

I know the last week of rad was hard for him to do; but he did it! He skipped one day but added to the end of treatment and he did all 35 IMRT's. We met another man age 72 who put his entire last week on hold for a week then he continued and completed all 35. You only have 14 left to do; you are almost done. Keep up the good work Tim! and talk to your doctors about options and concerns.

Lisa

Thanks Lisa,

Finished another XRT today so down to 13 now. I had 2 bags of IV fluids today. I usually get one a day except on the weekends but today they wanted to give me 2 since I had been vomiting and lost about 8lbs since Friday. That's the only weight I've lost so far and this the start of the 5th week. I have such a tough time eating orally and the tube feedings take so long when I use the pump. I wish I could just pump that stuff in my tube quickly, but I'm told that will make you sick?

Tim

Yes the feedings are time consuming; but my Dad actually found the longer he set the pump to drip; the better he felt. The feedings made him feel sick; he managed to do 3 day; the dr suggested more. He was using Glucerna for diabetics; it's the only one he found agreed with him; and only 235 cals each can. Not many calories for a guy his size or for anyone. He lost 50lbs. I read online Nestle has a high cal drink; you might want to look into it.

Glad you are having hydration. Now just sit back relax and do your feedings; watch tv or play on the computer; or doze off sitting up in a comfy chair. The nurse told my Dad not to forse anything in by mouth not even water.

Sounds like you are doing great for where you are at in your treatment.

Hey Tim; it's only been 3 1/2 months since my Dad finished his treatment and he's out eating in restaurant; spicy foods and all. So just know it gets better.

Lisa

Hey Tim,

My husband had that too and we found that doing the slow gravity drip bag was the only way he could tolerate feedings at the height of his side effects. Sometimes we ran a larger amount all night and just taped the connecting tube to make sure he didn't roll over on it. There were many days when he was hooked up all the time. See what you feel the most comfortable with.

All of this is frustrating but it will get better. What kind of anti nausea drugs are you on? We found that daily zofran with compazine for breakthrough helped keep it managable in addition to emend given on the chemo days. Maintaining your hydration and nutrition is one of those vital things that we can participate in and it will make a big difference in how you heal.

The decision on which chemo drug and how much to use is very individualized. Jack had 4 cycles of cisplatin, which was a team recommendation from our CCC in (consultation with 2 other facilities)and that was based on the fact that his cancer was poorly differentiated, extrascapsular and involved 7 lymph nodes. They monitored his blood counts all the time and the 3rd and 4th cycles were delayed but ultimately given. He still has ups and downs with his blood work that will probably continue for several months but they are monitoring it and treating it as needed.

Jack has a high frequency hearing loss that is getting better. Mostly he complained that his ears felt full, ringing was an issue at times, and hearing like he had a bag over his head. Some of that was also the radiation. The hearing loss does not interfere with his ability to talk on the phone or be in most conversations and he feels it's a good trade off even if it's permanent.

Someone on this site once posted that "nothing interferes with your quality of life quite like death" and Jack has taken that to heart. He's had surgery, radiation and chemo and side effects come with all of those treatments, but his swallowing came back good enough for the PEG tube to be removed, his taste came back for most things, he's off the pain meds, and he's back working 30 hours per week. He's tired but happy to be alive to complain about it.

Hang in there and let us know how it's going. Ask your doctors their rational for doing one treatment over another but remember that every case is different and those individual details are what determines what will work best in your case.

Regards JoAnne

Stoj,
Hang in there...
For the gagging on the phlegm, Tom uses a suction machine. I got the idea from posts here. You can rent one through a medical supply place. Ask your doctor to write the order and insurance will cover it (or if not, ours is $40 a month). It has really helped Tom. Our doctor explained that the phlegm gets particularly bad near the end of treatment and in the week or so just after because the radiation burns in your throat are seeping. Some say a humidifier helps, but we've not tried that. We're nearly three weeks past the last radiation treatment and he doesn't have nearly as much phlegm now and only uses the suction a few times a day.

As for tube feeding, he has always done bollus feeding, not gravity. No bag or pump is involved. Tom uses the bottom of a 60cc syringe like a funnel, inserts it into his tube and pours a can right into the "funnel." He doesn't use the plunger on the syringe. He follows each can with two cups of water into the funnel to flush the tube. He's eating nothing by mouth and each day takes five cans of Nutren 1.5, made by Nestle. It has 375 cal per can. tHe does one can, sometimes one and a half, about four hours apart to give it time to digest. Water is key. He makes sure he takes at least 10 cups per day.

Joyce

Dear Stoj, I wanted to echo Joyce's husband's method of tube feeding- John uses the same technique, altho he warms the ingrediants first. for a change of pace and to help stay regulated, he also has coffee, Welch's Concord grape juice and beer through his tube. [More calories and more liquid] He also uses Benefiber powder and NaturAid weight gain powder mixed with liquids. The tube feeding will get faster and easier and will keep you out of trouble! Amy

Hey we often wondered how you fed thru the tube without a bag. Interesting, so can you feed faster or do you have to pour it in slowly?
Any concerns of it causing dumping?

Tim my folks also warmed the cans a bit by sitting them in hot water to take the chill out.

When my Dad was dehydrated the nutritionist said we could put Gatorade (has electrolytes and lots of cals) thru the tube; make sure you flush well so it's not sticky. (He didn't try it, stuck with the cans and water). Our nutritionist wasn't a fan of putting anything but cans and water in the tube; yet I've read that people put all sorts of things thru it.

My Dad was told to avoid caffiene and alcohol.
There is a med called Domperidone; it helps move the feedings around better and prevent nausea. My Dad didn't feel it helped; he only took it for a couple of days. But it might work for you.

We found by measuring out the water in a jug every day is a good way to ensure you are getting all or close to what the dr recommends. Otherwise it's easy fool yourself.

Keep up the good work Tim!
Lisa

Wow,

Beer through the tube. Haven't heard that before. Yesterday was a pretty good day as far as eating goes for me. Managed a bowl of porridge, ice cream, a can of potato soup and a few bites of talapia fish orally. I also had a can of nutra 2.0 through the tube. Hopefully my weight will see a little bump if I can keep this up. Pain Meds are helping. And the flem (sp)gagging/nausea although present didn't seem as bad

Anyways I'm off for my next xrt only 12 left after this one. Thanks for the great advice I really appreciate every comment.

Tim Stoj