Coping in Texas
Member
Member # 3772

posted February 22, 2007 06:09 PM
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Hello Everyone - this will be lengthy as I am very tired and spent...no one seems to understand but this message board. My husband, Jim has finished his radiation therapy a week ago. You would think I would be ecstatic, but I'm not. His condition has worsened. We went yesterday for the feeding tube - he is a large man - 6' 1", weighing in at 270 when we started this. Now he weighs in at 230...you would think that would be enough to sustain him, but he is unable to control the nausea and yeast infections. I spent all day in the hospital w/ him getting the feeding tube and then they sent us home without instructions...other than see your Dr. tomorrow. So, our Dr.'s nurse flushed the tube with water, showed us how to flush food thru the tube. When I asked what food, then she said to see the nutritionist...It has been 3 days since he has had any nutrition and other than the fluid IV's we'll probably be in the ER this weekend again getting fluids. I called the nutritionist, she's out sick, so his radiation nurse said to give him Boost...well, we have been doing a can over the past 2 hrs. and he has thrown it all up...I'm so emotionally drained right now that I cannot imagine another day of this. My H is not being whiny or complaining, but he is very private and since we have been married (a whopping 4 months - yes months), he has had to reveal so much of the bodily functions not to mention what it has done to his male ego. I am just rattling right now as everything that is posted on this board is what is happening - only his nausea and yeast infections seem to be more prevalent than most. Thanks to everyone for posting so much personal info. on this message board..it really helps.

Paula
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Posts: 3 | From: Texas | Registered: Dec 2006 | IP: Logged

Gary
Administrator
Member # 457

posted February 23, 2007 12:54 AM
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Paula,
be patient. What he is experiencing now is pretty much SOP. Most all of us had our condition worsen for several weeks post Tx. The radiation keeps on working even though the beam(s) are "off". It IS very disconcerting for caregivers to watch. I lost over 60 lbs myself, and certainly my libido, for a time, but it ALL CAME BACK and is even better than before (I think that the body shuts off all unneccessary functions when in survival mode). I had nausea constantly and many bouts of thrush. I hold the record at UCSF for the amount of Diflucan I took. This is rather common also. Just take it one day at a time and stay in the now. get some counseling for yourself and take good care of yourself - eat well, get enough sleep, find diversions from cancer. It will pass. He will get better.

Many here have have better results with "Jevity" for PEG feeding and it is a prescription food so your insurance may even cover it.

I didn't have a PEG but some have suggested a slow, drip type gravity feeding, using a bag, might help mitigate the nausea somewhat. Sitting up while feeding may help also.

There are many anti-emetic drugs to choose from - talk to your MO about that. Keep that PEG tube flushed out and if giving any meds through the PEG, especially pills that you have to crush, insure that this is acceptable with the pharmacist. Some meds are time release and crushing them can cause an overdose.

I moved your thread to it's own place in "After Treatment Issues", so it doesn't get buried in Minniea's thread.

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Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x33(69.96cGy)

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Posts: 2190 | From: San Francisco CA | Registered: Nov 2002 | IP: Logged

Paula - It really does get better! My son did not have a PEG and the three weeks after treatment ended were absolutely the worst! He went from 225 down to 185 and after that he wouldn't let me see the scale when he got weighed. I was really worried because of the nausea and not being able to drink anything. He was trying to so hard to control the nausea. He would just sit there and stare at the bowl of chicken broth and just take a couple of spoonfuls and that was it. When I tried (every couple of hours) to get him to take something he would get irritated with me. Anyway, I think for a caregiver sometimes the 3 weeks post treatment actually seems to take a lot longer than it really is. At one of our worst points, I decided to look at the calendar and I was shocked to see it had only been a few days post treatment. Then, just before the third week started, it started getting a whole LOT better! It will get better for you and your husband, too. THere are lots of good ideas on this site and good suggestions for PEG feeding. Sometimes you have to try different things before you find the one that works. Hang in there and take care of yourself, too.

Hi Paula, Jack had a PEG tube and it's a lot of trial and error to find the best regime. Let me start with the basic nutrition. Whoever put it in needs to take some responsibility for getting you the right formula and dose. Just because the nutritionist is out sick doesn't change that. I would call today to get someone to address what you are supposed to be doing food wise to stablize him until the nutritionist gets back and makes a full assessment on the type of formula and number of cans per feeding and per day. There are standard protocols based on weight. For Jack the goal was 2200 calories per day. If they write a prescription and call it in to a medical supply company then insurance may pay for it.

Also there's equipment that needs to be ordered. You need 60 cc syringes to flush the tube, if they haven't given you a supply of those ask for some. They can be cleaned and reused. He may not be able to tolerate the can being poured in by gravity at this point because of the nausea. Jack had the same issue after treatment and we had to do his feedings through a kangaroo feeding bag that comes with a plastic roller to control the flow. The bag was hung from an IV pole - and how high or low affects the rate it drips - and we kept the flow very very slow. At this point it was taking about 2 hours per feeding. What you're dealing with now is trying to stabize the nausea. When you call make sure they know that he isn't tolerating the cans of boost and not getting any nutrition.

Remember this is all temporary as everyone has said. It will get better. Also make sure he is getting 2-4 quarts of liquid every day, whether it is by the peg tube or by mouth, to prevent dehydration. If they are only giving him compazine for nausea ask for a stronger medication - there are several they can prescribe.

Regards JoAnne

davidcpa
Patient Advocate (300+ posts)
Member # 3506

posted February 23, 2007 05:20 AM
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Paula,

Usually the 2 to 3 weeks post Tx are the worse for everyone. I didn't have a Peg and I wound up in the hospital in my 2nd week post Tx. Around the 3rd week was when I began to notice I was walking out of that dark tunnel for good. Even then he will have bad days so don't think it's a relaspe. That period of good days and then a bad day lasted for about 2 months but remember we can all react differently.

As far as wieght loss, I lost 30% of my body weight without the Peg but I am now 6 months post Tx and I have regained all but 10 pounds and I don't think I want those back anyway.

Try Carnation Instant Breakfast VHC. It has 560 nutritionally balanced calories in a 8 oz can and helped me tremendiously when getting the most bang for my buck so to speak was important. You don't need a prescription but you order it through your pharmacy, like Walgreens or CVS. Remember to specify VHC and 560 cals.

Like Gary said, be patient. I know that's easier said than done but all of us experienced the same things that he and you are going through now and we were all told the same things we are telling you now. It will get better and better but like in baby steps, not leaps and bounds. One day he will notice an improvement and he will feel like this is it but he may not see another improvement for a week or so. Improvements will come though. Six months ago I wouldn't have thought I would feel the way I do now. I also wished it hadn't taken 6 months but that's just the way we all heal from this barbaric treatment.

And it's OK to complain, we all did.

David, I moved this thread to "After treatment Issues" because it was hijackinng Amy's thread. Please respond to it in this topic instead. That includes anyone elso responding to Paula and not Amy.

[ February 23, 2007, 07:52 AM: Message edited by: Gary ]

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David

Age 58, SCC Stage IV base of tongue & 2 left nodes, non smoker, casual drinker, No surgery, Cisplatin x 3 concurrent with IMRT x 35, Tx completed 8/28/06. Complete remission CAT 10/24/06.

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Posts: 469 | From: Gulfport, Florida | Registered: Sep 2006 | IP: Logged

Paula,

I agree with the very knowledgable folks above. It was much worse for me the 1st 2 weeks after treatment. I had the PEG from the beginning and was glad I did even though I didn't use until the last few weeks. If you have Zofran ODT that workerd great for controlling my nausea. It's the under the tongue one. My wife would mix it with water and put it down my PEG tube twice a day. Once we started doing this my nausea came under control. I had a pump feeder for my tube feeds, it ran off battery and the rate of feeding could be slowed way down so it didn't nauseate me. Once I kind of got used to the nutra 2.0 (canned liquid food)then we spead it up a little. I started out doing one 8oz can over 6 hours I think. Anyways if I went faster I got sick. I had to sit up too, laying down was no good. I never could get to the 4 cans I was supposed to do daily. If I did two I was lucky, but I drank lots of water to keep my swallowing going. It hurt very badly but I didn't want to lose my swallowing. That's where the pain meds helped me the most.

My wife and I have been married for 19 years and I still had some pride and bodily functions I liked to keep private. No way during this treatment, total loss of dignity is what I called it.

Paula,
I echo what everyone says, IT WILL GET BETTER! I was at my worst the last week of radiation and for 3 weeks afterward. It really sucked. I couldn't eat for like 2 days and I had no peg tube. I didn't have to go to the hospital but I felt so bad that I almost did. Worse part of it, it was over Memorial Day weekend and my doctors were gone and the office was closed. Anyway, it all turned okay even though I probably scared my husband to death.

Even though me and my husband had been together together for years, we were only married 4 months when I was diagnosed with cancer.

This journey will only make you and your relationship stronger.

You and your husband just need to hold on.

There are several things you will need to address.
First, you need to get a handle on the nausea. Is it just because of the feedings going in, is it because they are going in at a rate faster than he can handle? Or is there some other cause for the vomiting?
Second, get yourself a bag with a long tube attached, and don't be squeamish. If an enema bag (new, of course) works, USE IT!
Third, if you can't get a bag or something like it, use the turkey baster, take off the top bulb and SLOWLY pur a mixture of tube feeding and water in, use about a third of a can of feeding to a third of a cup of water, and see if that stays down.
Make sure his entire GI tract is functioning, and that means, don't let him get constipated or get diarrhea, either one is devastating to him at this juncture.
Good luck, keep us posted on how things are going.

Andrea