My family member had dx of left later tongue cancer (T2N1M0) in January 2005 followed by surgery with clear margins in March and chemoradiation (35 tx and 4 ciplatin doses). Treatments ended in July 2005. Has had a g-tube since July and no eating by mouth.

Been seeing the ENT, radiation and chemo oncologist regularly. Last CT scan of head/neck and chest was in late November. ENT says it was normal. A videoscope exam of the back of the tongue and throat area was done within the last two months and no sign of cancer just lots of thick mucus.

But since tx ended, my family member does not seem to be improving but actually getting somewhat worse. Symptoms are lots of thick mucus which causes gagging and vomiting, loss of weight, lots of pain in the tongue, lately no energy to do anything and now daily cold sweats. According to the ENT there still lots of mucositis in the mouth and plus remaining scar tissues on the left side of the tongue. He does not seem concerned.

The mouth/tongue pain is still severe and to control it we are using a 100 microgram fentynal patch plus morphine. Plus using Robitiussin for the mucus.

We are getting worried. I would appreciate any comments or help wih regard to these symptoms and what else we could do.

These questions come to mind. How many calories is he getting each day? Weight loss while it could be an indication of something more, can be as simple as not getting 2000+ calories a day. So look at the most basic reason for weight loss first. This lack of good nutrition may also make for a feeling of being lethargic as well. In my own case I had about one month of recovery for every week of radiation. I actually got worse for the first two months after treatment ended...radiation sickness. I was on morphine and other pseudo morphines for almost 10 months after treatment. These made me want to sleep all the time and I had 0 energy. He is still on strong pain relievers and this may be a contributing factor in how things are going. Lastly, I had severe withdrawls as my morphine began to be reduced, as I had been on heavy doses for over a year. That included alternating fever and chills and sweats to go with them. Until the tissues of my sinus area began to recover from the radiation damage, the mucous flowed.... tons of mucous makes me want to throw up. I do not know if his situation is paralleling mine or something else is a play. When in doubt you can always get a second opinion to catch any doctors that are missing clues to something serious. I hope that is not the case, and ask that you keep a calorie and nutrition DAILY LOG for a few weeks. Also to speak with your doctors individually about the points that I mentioned and his condition.

I agree the first thing you should check is calorie intake as an explanation for lack of energy and weight loss. The painkillers I was taking and the thick mucous (which made me vomit too) kept me from getting the calories I needed every day for about 4 months after radiation--I wasn't losing a lot of weight at once but I was losing about 4-6 pds a month which was enough to sap my energy I think. In fact, it wasn't until I went off the perscription painkillers that I really could tolerate pouring enough stuff down my tube to stabilize my weight. I also gained a lot of energy back when I went off the painkillers (not that I'm suggesting your family memebr should do this if they are still having serious pain). I also had the cold sweats when I was going off of them for a while, so, like Brian, much of this sounds familiar to me.

But I also agree that of you are worried, perhaps getting a second opinion at this point would ease your mind. It really stinks how long it takes to recover from this and I know it can be discouraging even to read here of people who seem to recover fast if you are (or your loved one is) one of the ones who is recovering at a snails pace. It can feel like something must be wrong just because nothing's getting better--I have definitely had those same worries. Please keep us informed, Vin, about how your family member is doing.

Nelie

Vin - Radiation is truly the gift that keeps on giving. My condition grew much worse after treatment. The combination of radiation sickness and pain killers kept my energy near 0 for months. Much like Brian, I had months of 'issues' to cope with. Those things that helped me to most were additional calories, more water, tiny bits of exercise (a stumbling lap around my house) and sleep. The pain drugs were truly double edged - relief but lethargy and confusion. Getting away from them was tough.

Get that second opinion if you have doubts. Even the docs who are close to this every day can miss things. Its a small expense for the peace of mind it can build. Be strong. Tom

Vin, don't forget to subtract calories in the daily log when vomiting occurs. The number of calories to subtract is hard to estimate but you have to figure it into the total.

Brian.

Thank you for your reply and sharing your experiences.

I am the primary caregiver and you are absolutely on the point regarding nutrition. Nutrition has been a real fight. Until about a month ago, calorie intake was less than 800 per day and not subtracting for the amount lost to vomiting as Mark has pointed out. Overall, there has been a reluctance to eating on the part of the patient.

The vomiting complicates the issues because in their perspective what's the point. Then after ending up in the hospital and being admonished by doctors about the very low daily calorie intake and having talked to dietician, we have brought up calorie intake to about 1500. The dietician says calorie intake should be 1800+ but we have not reached that level. I ill continue in the struggle to bring calorie intake to 1800+.

The mucus situation and other symptoms like lethargy very much parallel your. There is tons of mucus which induces vomiting and with it loss of precious calories. Also we are still using strong pain killers.

From your reply and the other kind replies I feel somewhat relieved. There are so many caring and wonderful people here that are so willing to help and share their experiences and I am very grateful. It seems that the road to recovery is very slow and painful.

I also appreciate your suggestion with regard to getting a second opinion. We are in the care of CCC currently but there others in the area where we could seek further help.

Nelie,

Thank you for replying. Since the end of the treatments weight loss has been gradual and about 4-6 pounds per month as in your case. Like I indicated in my reply to Brian nutrition has been a real struggle because of the vomiting and the reluctance to eating.

Still using morphine and the patch but have also tried other painkillers which have been stopped cold turkey because of side effects and possibly this could explain the cold sweats.

I agree with you on the fact that it "stinks" that the recovery takes sooo low and it has been discouraging because indeed my family member is recovering at a snail's pace.

As in my reply to Brian, we can certainly seek a second opinion as there are other CCC in area that we can go to.

Tom,

Indeed!!! Radiation is the gift that keeps on giving in so many unpleasant and down right nasty ways. But the fact that remains it saves lives and it is wonderful to be on the green side of the grass.

I find it reassuring that the combiation of pain killers and radiation sickness are contributing factors to the 0 energy level. I never expected recovery to be so difficult, painful and to take so long.

Exercise level is also about zero due to the 0 energy level although walking around the house on some days is doable.

I wish I had found this site from day one when our ordeal with cancer started. I would have been much more aware, informed and better prepared.

I am thankful for your reply and support

Mark,

Thank you for replying. I had no idea that we needed to subtract calories lost due to vomiting from the daily intake. As I indicated in my reply to Brian, nutrition has been a real struggle and fight.

Including the calories lost as a result of vomiting, calorie intake was probably 400 per day for a about 4 months following end of treatments.

After having read the other replies, it seems to make sense that the poor nutrition in conjunction with radiation sickness and the use of painkillers have contributed to the 0 energy level, the weight loss and the general feeling of not being well.

As a matter of fact, a few days ago on one of those really bad days, my family members said to me that this was no way of living. I keep saying "Hang in there" as things will get better.

Vin,
I am my husband's caregiver and totally understand the frustration and fear after the treatments end, but the patient's health continues to decline. While I read everything I could get my hands on and knew the radiation would continue to 'work' after treatment, I certainly was not prepared. While Ken was going through treatment, we were 'attacking' the cancer. After the treatments, I felt completely frustrated because I could not 'do something' to help. Ken is three months out from his last tx and is just now starting to improve. There seemed to be two big hurdles we had to tackle - #1) Nutrition. All the vomiting caused by the very thick mucus and constant pain medications was tough to battle. Ken is on a J-Tube (like a PEG tube - but straight into his small intestines). Keeping him hydrated was critical. Ask your doctor about anti-nausea meds that could help ease the constant, nagging nausea. #2) The second and almost more critical problem for Ken (and me) has been severe depression. Radiation sickness is very rough - and it does add to depression.

Hang in there. This is a very long journey - but you aren't alone.

Vin,

I reached the point that when the doctor just mentioned nausea as a side effect, I vomitted! :rolleyes: I increased my caloric intake to about 4000 for many months before the weight started coming back. I tried to walk and excercise daily and found that even a short walk daily gave me a little more energy. I am still tired more than I was before cancer and it has been 2 years (79 days, 1 hour and 3o minutes...but who's counting? ) since they delcared me "cancer-free".

I also found the key was taking extra doses of guafennisen (available over the counter), lots of water (weight / 2 for minimum ounces per day) and using the humidifier (even now).

Make sure they check for thrush, too. It doesn't always present the same in everybody and sometimes one doctor mentioned mucositis while another found thrush for me. That caused a lot of pain in my throat and tongue until I got rid of it.

Best wishes for the journey to take a better route soon! Your family member is so fortunate to have you walking with them!!

Ed

Seremom,

As in your case, I was not prepared for the slow decline in health following chemoradiation. I thought that there would be a gradual recovery from that point. I had no clue. As in your husband's case, nutrition has been a struggle due to the nause and vomiting resulting from the heavy flow of mucus and the painkillers.

I too was fighting severe depression so I decided to seek help from my doctor because I felt I would be of more positive help if I was not as depressed. He prescribed Lexapro and that seemed to help.

I addition the support and encouragement I received from the wonderful and caring people on this site has helped to alleviate some of my fears in reading about similar experiences as in our case.

I feel that after about a year (dx in January 2005) of our war against this cancer I am finally moving in an acceptance stage and this is causing less stress and turmoil in my life as a caregiver.

Thank you for your encouragement and reply and indeed this is a very long journey - a lot longer than I had imagined.

I am happy to hear that Ken is improving and I would like to extend my best wishes to you and Ken for a full recovery.

Vin

Ed,

I am elated to hear that you have been cancer free for over two years and I offer my best wishes for you to continue to remain so.

Thank you for sharing your experienecs as we appreciate it and find it helpful.

As I indicated in my preview posts, after tx ended nutrition was about 800 cal intake per day but we brought that up to 1500 and now to about 1800. Hydration has been a problem even thouh daily water intake is about 2 liters plus 5-7 cans of jevity. My family member has sustained three hospital stays for lack of hydration and we can't figure out why his happens.

I will suggest some exercise and hopefully that will bring some energy back.

We buy Robittusin by the biggest possible bottle we can find but dosage remains 2 teaspoons four times daily. What was the dosage in your case? We are not using a dehumidifier.

At the monthly doctors and dentist visits, there is a mouth exam. Both the ENT and radiation oncologist feel that the irritation in the mouth is not thrush but the dentist feels it is and pescribed Nystatin in liquid form.

It was used for about two days and then discontinued because it contributed to the nausea and vomiting. There was an improvement though and although we have been arguing about it I have not been successful in having the treatment resumed. I think I gave up for now but I plan to bring it up at our next dentist visit. How long did it take for you to get rid of the trush?

Again, thank you for your reply and support.

Vin

Vin - I was surprised that the suggested calorie intake was only 1800 per day. I was told that aggressive treatment puts tremendous strain on the body causing calorie burning to rise sharply. I weigh about 190 and it was suggested that my daily calories should be over 3000.
Even now, 27 months out of treatment I am still on nearly 2500 per day. Every person's metabolism is slightly different, but that 1800 number seemed really low to me. I am glad you getting good professional advice about that. Question that dietician again when you can and mention the much higher numbers given to many of us. The body can't heal without fuel.

Be really aggressive with your docs about the vomiting. There are a number of meds that can really help. If you two demand enough, they will help you find something that works. And chat with your dentist (and your docs) about Diflucan for the thrush. My vomit problem was always worse when I had thrush going on, though I don't know why. The mucous becomes less and less an issue, but the reflux irritation in the throat can cause the vomiting to be more likely.

Chat with your doc - you may be able to substantially increase the Robittusin dose every once in a while. Ask first. Double the water intake and cut the mucous problem by half (or so).

Get that humidifier running, push the fluids and calories and know that it WILL get better. Walk a bit several times per day - it helps build energy and thirst. Keep a daily chart of intake, exercise, meds, barfs and sleep. Set tiny goals, meet them and then set more. Get focused on meeting higher goals instead of just handling the misery of the next hour. Focus on what IS working, not on what isn't. Keep us informed. Fight hard, be strong. Tom

hi vin, i was also shocked at the slow progress i made after my radical r/therapy, why are we not told about this after treatment backward step. you will go forward ,although you may not feel like you will you have got the support of some very informitive and caring people on this site ...chin up vin,hugs and prayers your way..... maz

Tom,

I am also surprised as to why the dietitian said 1800 calories per day when it seems that 2000 to 3000 per day is the norm. I will discuss with her.

Anyway we have increase calories to 2000+ but nausea and vomiting is still a problem. We have an appointement with the ENT coming up and we will ask about meds to hopefully alliviate this problem. As a matter of fact the chemo oncologist had precribed Reglan. But we did not use because of the other several meds being used. Any experience with Reglan that can be shared with us?

Regarding the trush, we do have Diflucan but because it was adding to the nausea and the vomiting we discontinued it.

Thank you for your adive on doubling the water intake. Again we were told by doctors and dietitian that liquid intake should be 2 liters per day and we are well above that but if more liquid cuts in the phlegm problem we will do.

We are starting to be active so exercise is going up and seems that the energy level is also up and not sleeping all day long as before.

We were maintaining a log of daily meds, food intake, water and so forth but we stopped doing that a while ago as it seemed a chore just to maintain the log. Maybe it is time to resume with the log.

Anyway things seem to be turning the corner. After pushing calorie intake up, more activity and discontinuing a painkiller there seems to be an improvement.

Thank you for replying and your advice. We appreciated.

Maz,

We had no clue that there would be a general decline in health following end of treatments. We are just about one year out from dx (1/05) and 5-1/2 months from end of tx.

No doctors ever mentioned to us that health would first decline. I wish they had as I would have worried less. As a matter of fact at times I thought the cancer had come back because we hit some very low points healthwise.

I thank my lucky blessings for this site as I was able to post our experiences and receive many replies from caring people that were willing to share their own experiences and that helped alleviate a lot of my worries and fears.

We seemed to have turned the corner healthwise. I think what did he trick was that about two weeks ago we stopped a painkiller called "NORTRIPTYLINE" which was zapping all energy and causing othe side effects. From Brian's post it is likely that the cold sweats may have been caused by the stopping of this pain killer which was also sapping a lot of energy.


Energy level has gone way up so we are more active now. Also we have increased calorie intake from 800 per day to 2000+ and that seems to be helping a lot.

Thank you for the hugs and prayers, I certainly need them after one year of fighting this war as a caregiver I am quite burned out.

I also send hugs and prayers your way. Again, thank you for help and support.

Vin, Hooray! I'm glad you sense a corner has been turned. I certainly started feeling much better and had more energy when I discontinued the prescription painkillers as well. The extra water and calories have to be helping as well. The Duflucan is a two-edgeed sword as it can deifnitely increase nausea but if your loved one has thrush, they will rpobably need to take soemthing to get rid of it. I would only take it if your ENT confirms that they see thrush there, though.

Nelie