One patient with glioblastoma still alive nine years later
by Kim49 on Sun Mar 28, 2010 09:55 PM
Hey out there.
I hope somebody can help me. English isn't my fist language so I will make a few spelling errors. I do hope somebody will be able to help me. My wife has undergone raditiation and chemo treatment for throat cancer. (second time - first time was 6 years ago). Radiation treatment ended in December 2009. She still takes medication for pain. Primarily contalgin and pinex for the pain. It's decreasing which is fine.
The mail problem is she can't drink water or swallow very much food. She is almost choking because of secretion. As a consequence of that she is stille getting most of her food through a stomach pump.
We live in Denmark and there aren't that many people in their 40'thies who has got throat cancer twice. There nobody can tell us much about the side effetcs. My quetion is:
1) Will the secretion go away? It has been there for 3 months now and it is not getting much better? Anybody has any knowledge/information?
2) Any ideas about how to help her eat normally?
by PopPop on Tue Mar 30, 2010 05:01 AM
First, I'm sorry to hear that your wife had to deal with this twice already. I will try to answer some of your questions. But, I see that she can't drink water or swallow much food currently.
The secretion seems to be blocking her efferts to drink the water and get the food down. Does she get de-hydrated at times ? if so, she may have to force herself to take in more fluids, either orally or by the stomach pump. My Doctor told me that when I was going thru the radiation, that I needed to take in 64 ounces of fluids daily. Mainly to stay hydrated and fight constipation from the medicines.
One thing I did, was use a solution of 1 teaspoon of Salt and 1 teaspoon of Baking Soda in 1 quart of luke warm water mixed up. I would rinse and gargle, then spit every 30 minutes or so to semi-numb my mouth from the sores I had due to the radiation. After a short period of time, I increased the amounts to 1 tablespoon of each in the quart of water. This also helps break up the secretions ( Mucus ) and by taking more fluids, the secretions should be thinner.
The secretions do get better as time passes, but each person reacts to treatments and recovery differently from the next person. If she can, try to couch up as much of the mucus before she tries to drink or eat something. Stay with soft moist foods for awhile and slowly work back to what she can handle.
You may want to repost your question over in the Head and Neck section of this site, as there are more people there that may be able to help.
My Best to Both of You and Everyone Here
by Kim49 on Tue Mar 30, 2010 11:30 AM
Thank you for your quick replay and your advice. I will pass the advice on to my wife. It's just that the radiation treatment ended some 3 months ago and she is still having problems primarily because of secretion. If the secretion would just decrease to an extend so she could get rid of the stomach pump then she would be able to move on socailly also.
The secretion is preventing her from eating enough and there fore she has to rely on the stomach pump. As a consequence she can't start working again and we can't invite people around for dinner and we do socialize less because a lot of Danish social interaction is focued around eating and drining. Everytime she drinks or eats she coughs and that reminds the kids, freinds and family that she has been sick. Because of that she is beein kept in a role as sick although she technically isn't.
I will follow your advice and repost my request on the Head and Neck section. I didn't know I was in the wrong section.
Thank you becaue for the first time in 3 months I get some feedback and some advice.
by lovingspouse4 on Tue Mar 30, 2010 12:57 PM
You don't say what type of radiation therapy she received or for how long, and being from Denmark perhaps it's different from the US, but it seems like you are expecting too much too soon! Three months may seem like a long time, but in terms of recovery from the damage radiation causes to the normal tissues and glands, it's probably not time enough to recover to the extent that you both would like.
PopPop's advice is right on target! I'd suggest you read previous posts from the head and neck section about the effects of radiation. Everyone is unique and walks their own path to recovery, but the vast majority suffer with various side effects for a long time, some of which are long lasting and may be permanent.
Everytime she drinks or eats she coughs and that reminds the kids, freinds and family that she has been sick. Because of that she is beein kept in a role as sick although she technically isn't.
She may not technically be sick in your eyes, but she may never reach the point where you believe she should be. People here call it the "new normal." PLEASE be compassionate and patient with her! Give her all the time she needs to recover, however long that takes. Don't place any more burdens, like socializing, or working, or eating "like normal", on her. Patiently encourage her, be positive, give her the gift of TIME to recover. She's alive and hopefully cancer free! Celebrate that every day!
With love and concern,
by PopPop on Tue Mar 30, 2010 03:31 PM
Thank you for your kind words. As Diane mentioned also, each of us recovers at a different rate of speed. Now, on to the secretion again. I am 5 plus years our of treatments and I still have the Mucus each day. Some days are better than others, but it is still there. Not like it was during and after treatment for the first year. It got better as time went on. I only have to cough and spit up a few times a day verses every half hour, or more,like I did before. I try to continue to drink a few glasses of water daily.
Something that I am not sure of, is the stomach pump that you mentioned for your wife. I didn't have that. I had what we call a PEG Tube. A flexible rubber hose about 10-12 inches long attached to a rigid peice of plastic inserted into our stomachs. We then can be hooked up to a Bag that is hung from a metal rack to take in our nutrition. I had the PEG Tube and used the rack only once. I didn't like sitting there in a chair as the nutrition flowed in at the rate of one can per 1 1/2 hours.
I was given a syringe to flush the Peg Tube once before feeding and once after with luke warm water. I would flush twice before and twice after each feeding. What I did do to feed myself, was to remove the plunger from inside the the syringe and use the syringe as a funnel and attach it to the end of the hose.
I would be set up prior to feeding by having my 2 cans ready at the table. Sat in a chair and had the hose ready. Raised the hose above the inserted section and then I inserted the syringe into the end of the hose. Poured the nutrition into the syringe and held it above the Peg level so gravity would take over. I would take roughly 10 minutes per can and would be done in roughly 20 minutes with my feeding. This way, I could go about other things during the day and felt like I wasn't held hostage by the feed bag. Many people here use this method and it is called the Gravity Feed Method. It worked well for me.
I enjoyed being around family and friends, even during dinner. I would feed myself before we went anywhere and I would sip on a cup of coffee while they all ate. This way, I was still part of all the activity. Hopefully, soon your wife will break through the mucus problem and feel more like herself. I know, once the Peg Tube was removed, I felt better, just knowing that I didn't have to wory about bumping and cleaning the Peg Tube daily.
My Best to Both of You and Everyone Here
by Kim49 on Tue Mar 30, 2010 03:57 PM
Thank you for your reply. I don't know precisely what kind of radiation she got to the throat. i am supporting all I can but she is beginning to loose faith in further progress now four months after end of radiation. I am telling her that things will improve but at the present progress is fairly slow. She is having troulbe swolloing fluids and she produces thick secretion when she starts eating. As a consequence food get stuck and then she starts choughing.
But because of the rareness of her condition ( 2'nd time around and small population) the medical staff at the hospital is having trouble to say how long it could take before things get a little more normal. (we have the impression my wife is a sort of case at the hospital because they don't get many patients the second time around with new tumors - therefore they probably know very little and can't say that much. They don't admit to this but it is our general impression)
I dosn't matter if it takes 6, 9 or 12 months if just anyone could say with a bit of certainty that she would get rid of the stomach pump and she would be able to a more. If its just a question óf time then it's OK. If we can do something ourself then we will do it. It's just that the level of experiance is rather low and that makes it a bit difficult.
by Kim49 on Tue Mar 30, 2010 04:20 PM
Thank you for your reply. It's good to hear that the Mucus decreases with time. Maybe we are less patient because she went through the first treatment with virtually no or very limited side effects. A dry mouth and it took a little longer to eat bread - but that was basically it.
The reason why food and drinking is important is because my wife has to have food through the stomach pump every 3-4 hours. That decreases her activity radius. She to be near a micro wave owen within reach. Secondly is likes to cock, eat and make dinner. That's the second reason why food is important.
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