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