I am caregiver to my husband, Doug, 54 years old. He completed his chemo (5FU 4x; Carboplatin 2x; Docetaxel 2x)on 3/29/06 and radiation (36x) on 5/1/06. Between 2/28/06 when he started treatment and 4/1/06, he only drank an occasional Ensure or milkshake with no other nutrition. On 3/7, he began getting fluids periodically at the cancer center. From 4/1/06 to 4/21/06, he could not drink anything but water, so he had no nutrition. After spending a week in the hospital with no radiation or chemo treatments, they started him on 24 hour TPN administered through his Mediport. By this time he had lost about 35 pounds. It has now been 7 weeks since he ended treatment and he is still at a constant Level 9 pain despite 150 mcg Fentanyl patches, 1.5 ML Morphine sulphate as needed every 2-4 hours, and Viscous Lidocaine swish every 2 hours. He can barely open his mouth and can only speak for a few minutes without increasing his pain intensity. He can drink a little cold water, but only if he slides it down one side between his teeth and cheek. If it hits his tongue it is excruciating. He sleeps about 22 hours per day, only getting up to use the restroom, change the TPN, and check his work emails. When he sleeps, he often talks in his sleep and picks at unseen things with his hands. He also jerks alot in his sleep. When we tried reducing the pain medicine, he couldn't tolerate the pain (not that I consider Level 9 tolerable, but it's better than a 10). He had fevers off and on during treatment and was treated with antibiotics. Any activity at all causes vomiting which is only dry heaves with bile given his empty stomach. This in turn makes his tongue pain even worse. We have had difficulty controlling the nausea given that the anti-anxiety components of the nausea drugs send him over the top with hallucinations. Since 5/27, he has had a total of 17 days Levaquin drip due to high fevers (sometimes above 103). They cultured around his Mediport site to check for infection, but cultures were negative. Dr. decided to take the Mediport out anyway on 6/9 as a precaution. They put in a PICC line so we can continue to administer TPN. We were hopeful that the fevers would stop, but they didn't. He has had fevers over 103 in the past 72 hours. Tylenol suppositories do break the fever and usually bring it down for at least 24 hours. A chest X-ray about 3 weeks ago was negative. He spits up yellow-colored mucous constantly, which causes further tongue pain. The at-home suction machine did not work well for him because he needs it every few minutes and it was so noisy and needed constant changing of the bucket due to heavy use. His pre-treatment counseling was limited, consisting of some brochures, etc. He cannot brush his teeth and does not have fluoride trays. He does swish his mouth every couple hours with a solution of sterile water with baking soda and salt. During treatment he tried GelClair, but now it burns too much to use. He uses BMX solution sparingly but only directly on his tongue. If he swishes with it, he gags. He also tried the Biotene Oral Balance liquid to increase his saliva, but that didn't seem to help. A CT scan on 6/12 showed the lymph node had shrunk to normal size, there was scarring and thickening of throat tissue, but no apparent abscess. He cannot get his mouth open wide enough for a visual exam of his throat, but his tongue and cheeks do not appear to have thrush. Needless to say, he is very discouraged that there has not been incremental improvement after 7 weeks. The doctors had told him to expect improvement after a week or two. I can see from the other postings on the site that this was probably wishful thinking on our part. The oncologist told us that Doug has had worse side effects than any other patient with the exception of one older gentleman. Not exactly comforting. Doug is still employed, but is concerned as to how long his employer can hold on when there seems to be no re-start date. This concerns us as well due to all the medical bills. A year ago, Doug had planned a once-in-a-lifetime golf trip to play all the old courses in Scotland, including St. Andrews, with three golf buddies. During the intensity of his treatment, he still expected to make the trip and this gave him courage to keep plugging along. Last week he finally realized that he had to cancel the trip which was to start next week. Now he is extra discouraged. Thankfully we both have a strong faith and that is what keeps us both going. I am sorry for such a long post, but I wanted to put all the information out there. I am hopeful that someone can give us some tips to get him started on the road to recovery. Thank you already for all the tips that I have gleaned from 4-5 hours of reading old posts.

Ellen,

Welcome to this site. I'm very sorry to hear what you and your husband have been through the past few months.

One thing I don't understand from your post is how his medical team allowed so much time to pass (from 2/28 to sometime in late April) with no intervention to get his nutrition where it needed to be. I know my cancer team included a nutritionist who checked with me regularly about my intake to be sure I was getting enough calories all through radiation. It's absolutely critical to maintain a set level of nutrients (and hydration), whether by mouth or by tube, and I have to suspect that if he was falling short in this area, it contributed to some of the other effects he is experiencing now.

Cathy

Hi Ellen,
and welcome to the forum. His experience doesn't sound a lot different from mine actually (except my oncologist told me I was doing better that most other patients he sees). I lost over 60 lbs. It is a bit early to back off the the pain meds. In the scheme of things it's a fine line between 9 & 10 on the pain scale. They can increase the Fentanyl up to 300 mg - but always in 25mg increments. They have a formula that if he is taking a lot of morphine then they increase the Fentanyl. I also used Compazine suppositories for nausea.

I used a straw to direct liquids away from sensitive areas.

He needs a baby's toothbrush (the softer the bristles the better - and Biotene toothpaste). The flouride treatments I used were pH nuetral and didn't add any extra pain - it was prescription stuff I got from the dentist)

Why TPN instead of a PEG?

The doctors were "blue skying" him. Almost all here have had a month of recovery for each week of radiation.

I did a couple of courses of antibiotics myself - infections are quite common with a "crashed" immune system.

Sorry about his trip to St Andrewes - I golf too. The main thing right now is to survive the after effects of treatment. Take it one day at a time.

Hi Ellen,

Sorry to hear that your husband has had such a difficult time with his treatments.

Most people have PEG tubes but TPN does give him nutition so at least it's being addressed.

We had to cancel our 25th wedding anniversary trip to Hawaii so I understand how disappointed your husband is to lose out on going to St. Andrews. The important thing is to get through this period.

We were told that recovery would be at least 6 months after radiation and chemo ended and more like 9-12 months until your body really recovered. 7 weeks is still the acute phase where the effects of the radiation and chemo are active.

The only thing I would add is that it sounds like he has a fairly severe trismus, which is the inability to open his mouth. There's good information on this site if you do a search. Jack developed that following his surgery and the radiation intensified it. He has been using a therabite jaw exerciser to do gentle stretching. If the trismus is not addressed it will get worse and make his oral hygeine care more difficult. I know he has a lot going on but I would talk to the doctors about stretching exercises.

Hang in there.
Regards JoAnne

Ellen-
I am sorry that you and your husband are having to go through such a rough time. I don't know why some seem to get so much sicker than others from treatment. Your husband's treatment sounds very similar to my Moms last summer. She got so sick she could not even finish it. Her symptoms lasted alot longer than anyone ever expected as well. She also had fevers on and off for a few months after the tx. Just hang in there....it will get better. I felt like my Moms side effects would never go away, but eventually she started feeling better. She is still not 100% (10 months later) but she is back to work and living pretty closely to her old life. She also experienced a similar let down with her lifetime dream trip. Her husband bought her a trip/cruise to Hawaii for her 60th birthday and they were suppose to go in Oct. Based on what the doctors told her she should have been well enough for it by that point but she was still a train wreck. She did make the trip late in January. She was not 100% but she went anyways. By re-booking it for a few months later it gave her something to strive for. I think it helped. Hang in there and keep doing the great job that is sounds like you are doing supporting your husband. I hope that better days are coming your way soon!
Tami

Thank you to everyone that responded. It really helps to know that what he is going through is normal and that he will get better. I wish we would have been more prepared for the length of recovery time. The reason he did not have the nutrition earlier is that the doctors kept telling him he would feel better a few weeks after radiation. He figured he could stand to lose a few pounds and the doctors did not push it. It wasn't until he was hospitalized that they began to address it. My husband said he didn't want a stomach feeding tube and they said okay to giving TPN through the Mediport. We really didn't know anything about feeding tubes and thought it was only reserved for the worse-case scenario patient. Now I see on the site that nearly everyone had one.

Hi Ellen,

Your husband should have had the tube. I wasn't able to get rid of mine until 8 weeks after treatment. He had much the same treatment as I. Only I only had 2 ropunds of 5fu, plus the otrher chemo and 35 radiation treatmetns. I think that the 5fu plus the radiation has caused the most problems for him. 5fu is famous for mucousitis. I know he is discouraged, but at least the treament is done. I think he will gradually heal as I did. I expected my sores to begin going away after two weeks also. It took 8. With what Doug had, it could take him a while longer.

Hang in there, I'm hoping his pain begins to subside soon.

Steve Daib

Ellen,
As you noticed not everyone had one -there are a few of us who didn't (or any other kind of feeding tube). I for one - Mark also. I lost over 60 lbs, have made a fine recovery and am 3 1/2 years cancer free today. I left 30 lbs "at the door" which I didn't need anyway. There are better ways to lose weight and during the healing and rebuilding phase is NOT one of them. It can slow down and extend the recovery process.

It's a shame that your doctors gave you so much BS. Recovery in the early stages in measured, in the slightest improvements, in 3 week increments - it is incredulous to me that they would even use "2 weeks" and "feeling better" in the same sentence. You must not have gone to a comprehensive cancer center.

Most SHOULD have a PEG tube. Did you ever meet with a nutritionist during all of this? She/he might have set you straight. The PEG would have given more feeding options I am sure.

I was disabled pretty much for almost 2 years before I was back to about 98% of my regular routine. Some recover faster and some slower.

The good news is, by now, he should be turning the corner and you start seeing improvements. It is a game of great patience - nothing happens quickly in the this kind of recovery.

Ellen - Too bad your docs didn't press the need for a peg tube. I was told that the body's need for nutrition doubles/triples during treatment. Also the need for hydration triples. Some folks seem to think that a milkshake or two during treatment will carry them through. Body weight is NOT the issue during treatment - calorie and fluid intact IS the issue.

Cancer treatment is NOT an opportunity to lose a few pounds. Even mild treatment regimes put enormous stress on every part of the body. Without newly supplied fuel (nutrition and fluids) the body has no means to fight. Only small amounts of body fat can be converted to this important battle, and only very slowly - in no event fast enough to help the body fight the treatment. It is my opinion that going into treatment, even low level treatment, for oral cancers without a peg tube is irresponsible - borderng on negligent.

Many of the symptoms you describe could be partially or entirely nutrition related. More calories and more fluids might dramatically reduce every thing you describe.

My advice: Go be a tough guy or a weight watcher after treatment is over and you want to spend 6 weeks fasting at the ashram. Cancer patients are in a fight for their lives - even when the cancer is small and local. Each and every thing you do to help the fight increaes your chances of a good outcome. Eat more - 3600 calories per day - (one way or another) and cut symptoms in half. Drink more fluids - 2-3 liters per day - and cut symptoms in half again. Excess suffering in treatment is optional. Get your calories up to 3600/day and your fluids up to 3L/day and if you don't feel a bunch better - I'll buy lunch.