Hey there.
i was a little dismayed to read that your husband had taken his pain patch off.Doing that without medical supervision can cause all sorts of problems which you may not notice for 24 hours as there wil be some residual medication still seeping through.Please tell him to be careful,and if he gets the shakes ,sweats and aches and pains all over then ring a Doctor and get him onto an alernative medication.

liz

Hi, Skp, It would probably be a good idea for your hubby to use the peg to get as many calories down as possible, while continuing to swallow liquids, soups, etc. Remember, weight loss is not good unless he was profoundly overweight to start with. Instead of you having to remind him to eat, why don't the 2 of you set up a calorie & liquid goal for each day [either by mouth or by peg] write it down and make him responsible for keeping the chart. It takes the responsibility off you [a little]and you don't have to be the "calorie keeper".AS to the fentanyl patches, my husband was one who could not tolerate that drug. For most of his treatment, hydrocodone and hydromorphone controlled his pain and allowed him to function. Hopefully, your hubby will be able to find a pain med to replace the fentanyl. Markus has good info on mouth washes and gargles. Best wishes going forward. Amy in the Ozarks

Hi Skp,
My husband and I are a couple weeks ahead of you. I totally can relate to the tension around getting calories in. Another person on this forum gave me good advise. Since he will be weighed regularly, the medical team can be the ones to get on him about nutrition. This helped me so much. So, I just quit making that an issue between us. He was hospitalized this past week with malnutrition and is now on TPN (IV Feedings). I'm not saying this is the way to go, but it was causing so much stress and arguments that I had to let it go. Maybe your husband won't be as stubborn as mine. I have to say that even though TPN is more work for me, I have peace of mind that he is getting his nutrition everyday. I like what Amy said about staying in the present. It is a tough road but there is light at the end of the tunnel. Right now we have 5 more radiation treatments and one more chemo treatment.
Take care,
Valerie

Valerie,
please be prepared for stuff to happen once the Tx is over.
The frentic activity (going to and from tx) ceases as does the constant interaction with medical personnel. That takes its toll, Also the radiation effects will linger for a long time. For me the last week and especially the 2 weeks after Tx were worst.
Best

Markus

I got a little ahead of myself when I said we were at 19, it was actually 14 and today was 15 and round 2 of chemo. He was not overweight to begin with 6'3" and 209, but in the past week he has lost 10 pounds. They called the dietician in again today to talk to us and I think it is sinking in a little. He drank 2 ensure, one carnation breakfast and ate almost an entire grilled chicken sandwich with extra mayo. He also found today that Mt. Dew tastes better than anything in a long time. The doctor is going to give him a new pain medicine tomorrow that he can take as needed instead of one that is on all the time. All in all it was a pretty good day. He was very sick in between radiation and chemo, but said he felt a lot better by the time they started the chemo. Thanks for all of the tips and support! The radiation nurse gave his number to a couple of guys who have been through it so they can call and encourage him....maybe a little pep talk.

Markus,
I keep hearing this message over and over again on this board. Right now I can't imagine it getting any worse but I know it does. His RO said halfway through treatment it doesn't get any worse than this. I looked at him like he was crazy. I have read this forum for months now and no one has validated that. Quite the opposite. He also said last week that he should be able to swallow again in a week and a half after treatment is over. Has anyone here recovered that quickly? My step daughter was with him at that appt and when she told me that I laughed out loud. I am beginning to wonder about the RO. What bold (stupid) statements he is making.

What kind of things happen after treatment is over?
Thanks,
valerie

Hi, Valerie. Your hubby might be among the luckiest people around or his rad Doc might be God's gift to rad patients, but I would not go buy steaks to put on the grill just yet. Chances are he will continue to have many of the same problems he is having now with swallowing or mouth sores, etc. And he may need stronger pain meds to control things. Point being- this Doc can't predict that- so you need to be prepared for whatever happens! Keep pushing liquids [Pedialyte is good as an alternate with water] calories are good. Radiation is a brutal therapy for most and the effects don't just stop on the last day of rad. Not trying to scare you- just prepare you for what might be ahead the next couple of months. And I personally think that Doc is out of line saying those things because it can make someone feel inadequate for not meeting the Doc's expectations. Has this Doc had radiation treatments? Amy in the Ozarks

Valerie,
... well the RO's normally do not get the treatment so some of them really do not know what it is like. His RO is not very smart (so put this mildly) to say this but that does not mean you have to become a complete sceptic. There is a wide spectrum how people react to the treatment. (due to individual response but also tumor location and extent as well as irradiation volume and concurrent and differing chemo treatments). Especially, with IMRT it can vary quite widely. True there are people who sailed through this and were eating normally (or almost so).... but the majority do not. I was not eating solid (well semi solid anyway) food for about 3 weeks (PEG), but I was drinking water and milk or milk with some coffee for color (sometimes even water burned depending on the source!)
It is not smart of the RO to state the best case scenario! Naturally, we grab at that straw. It is much better to have a more realistic (perhaps even pessimistic) outlook. Anything better than this IS positive.
My RO told me that the treatment will be brutal and that I will hate her. (Her words!). Fortunately, it was not that bad.... but I was expecting it and I did feel uneasy for quite some time (other shoe and all that). I managed to drive to Tx and to work half days with exception of the weekly chemo days up to the last week and started work again about 2 (slimy-mucous-wallpaper-paste) weeks after the Tx ended. Mind you I am pretty sure I was not very effective and just the walk from the garage to the lab knocked me out the first day back. (Not very smart that!!). One thing that I noticed that once the TX was done there was a distinct letdown. During TX you are busy to go to rad and chemo TX etc and then all of a sudden there you are all by yourself without constant medical attention.... just with your thoughts... what if. For me that took some adjustment. This is also when you may develop thrush.. and since you are miserable/hurting already and probably are on fairly hefty pain killers it may be difficult to know this. (I would recommend a weekly checkup).
Wisdom gleaned from this site states that it takes a month for each week of radiation. Taste/dry mouth can take up to a year or longer to reach a new equilibrium.... whatever that may be.

Since then (2 weeks after TX) things have improved for me steadily and quickly. Taste has returned somewhat (still ways to go, amazingly shrimp came back early), numbness has gotten less, blisters are gone (and if I get one I do not freak out right away). I still do not like steak and dry things (I used to love salt and vinegar potato chips......) and wine is still out. Since the end of the TX I have been in Mexico and Switzerland for holidays and a class reunion. There is life after this, and things that seem impossible to even contemplate during the dark days are possible!

Hang in there!

Markus

My hubby was one of those who recovered rather quickly. Even though he received twice daily radiation (quoting RO..."brutal but effective and no way witout a PEG tube")and landed in the hospital at week 6 with fever/neutropenia, he bounced back starting the first week after txs and was totally off the PEG tube by week 3 following his last rad. Go figure. His status now at 6.5 weeks post treatments is almost normal other than taste is at about 50%, saliva is about 60%, and he gets lightheaded when arising from a stooped position. Please note that he is age 63...not old but certainly not young. One tough bird for sure...Deb

Rinsing with plain club soda helps cut the tough mucous.