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wife of tongue cancer survivor

Posts: 1
Joined: Nov 2009

My husband finished his radiation treatment (33 treatments) and chemo (3 days a wk, 3 separate times) on 10/8/09. Four weeks into the radiation he began using the peg. He has about three or four ensure plus a day which in my opinion is not sufficient (lost 45 lbs.). He is just about eight weeks post treatment and can't eat solid food. Water is even painful. I have actually taken him to a speech pathologist for swallowing therapy. She gave him some exercises to work on. She said even if you can't get the food down, it is important to practice swallowing. He is in pain most of the time and the morphine causes constipation and can make you hallucinate. Spitting is ongoing and he is not able to lay down for more than 10-15 minutes because he chokes. Good news is the Ent says they see no cancer, just flesh on the tongue. The pet scan is in two weeks. I am just trying to gather info on when the pain may subside. I realize everyone is different but any info is helpful

I also want to say that any one married to a cancer patient needs to be strong. The patient is doing the best they can and sometimes that means getting depressed, angry and frustrated (alot). As a wife I tell you not to take it personal and take several trips outside the house. Make sure you take care of yourself because your the primary caregiver. Watching someone in pain for a prolonged period of time doesn't help you or the patient. Step away and get your own support.

fishingirl's picture
Posts: 188
Joined: Nov 2009

Hi Janet!

I am at approx. the same stage as your husband. It has been 4 weeks since my last radiation treatment. I had cancer at the base of the tongue. I did not have chemo. I also had a feeding tube put in about 2 weeks into treatment. I have 2 Ensure 3x daily. I'm holding my weight steady, but I was soooo thin during treatment and before, as I could hardy eat before I was diagnosed. Still, I cannot eat food. I can drink though. I have water, tea, and 1c. coffee per day, and juices. It's just food I can't swallow.

I also wake up during the night having to cough up phlem. About every couple of hrs. Then go right back to sleep. I go see my Oncologist Dec.7, so we'll see what he has to say. I do know everyone is so different on how they react to treatment etc. And congrats on your husband being cancer free!!! That must feel wonderfull!! Don't worry, he will slowly continue to improve each week. I was told, don't go by days. Go by weeks. lol!!

P.S. My husband has been great about patience and understanding. I feel bad for him sometimes. I know it's hard on him too.


LucyVance's picture
Posts: 22
Joined: Feb 2008

Hi there Janet. Great news about the visual no cancer and good luck with the PET scan - if your husband is in so much pain though...I'm wondering if he has healed enough for a clear scan. If he is irritated or infected in anyway still that will show up on the PET scan and cause unnecessary anguish. You might ask your doctor about that.. Otherwise it's not the best stage of the process for your husband that's for sure. I went through that with my husband about 1.5 years ago. He didn't start to feel better in the least bit for at least 2 months after the treatment ended. It took quite a while to get back to solid food but your therapist is right about practicing swallowing being very, very important if he wants to eat normally again. The feeling of choking and spitting is pretty common with the people we've met and the phlem that is like cement just sitting in the back of the throat too. One thing that might help with the constipation is a fiber rich canned nutrition - ask your doctor for something else other than Ensure - there are dozens of choices. I like Nestle's Compleat because it has real chicken and carrots. Also, you can make homemade food which is a good way to help him make the transition back to real food more easily. See our story and recipes at lucysrealfoods online. Hope this helps a bit and hope hubbie starts to feel better soon. Keep up the great attitude! Lucy

SASH's picture
Posts: 399
Joined: Apr 2006

You might want try baby food as these are high in nutrition and he might be able to get them down without too much pain. You can also ask the doc for a prescription for a numbing liquid for when he eats. I was on Magic Mix also known as Magic Mouthwash. This numbs what it touches and makes eating a little more bearable.

Scambuster's picture
Posts: 973
Joined: Nov 2009

HI Janet,

I am 8 weeks out and had a lot of pain issues as well. 2 weeks out I crashed and burned and had to go back into hospital for a week I was that bad. It sounds like your husband may need some attention re his depression. I did and thank god they finally recognized it. I was taking morphine liquid, Vicodin, Maxalon and Nexium which I had to crush up and inject into belly through the tube. I was rough going.

When they took me in, they sent in a Psychiatrist and he changed my meds around and I became a different person. I actually stopped the pain meds and have rarely taken them since.

As for the constipation (mainly from Morphine) I had to use a fleet water enema on occasion when I was still in hospital but if you can find a 'Colonics' clinic around, a colonic flush will help heaps to cleanse the poison out as after extended use of all the meds, he will be quite toxic. I remember being almost carried into the clinic after 10 days in hospital for the surgery (Tonsil Cancer) and I walked out 1 foot about the ground and went for nice meal ! It's not everyones cup of tea but Colonics should be part of our recovery therapy and studies have shown colonic cleansing and caffeine enemas aid ion the treatment and prevention of cancer so you can google that to get more information. I can't do it at present till I get my PEG removed so you will be in a similar situation but something to look inot post PEG.

In the mean if you can put fresh juices into him through the PEG then do that and I mean fresh vegetable juices like Carrot, Celery, beet-root, apple, pear mixes. These will help with cleansing the colon and help bowel movements.

Another valuable tip is to get some Glutamine powder. I couldn't drink water as it stung my mouth and tongue too much. When I added the Glutamine powder I found I could drink the water. It is totally tasteless and has many benefits in assisting healing and recovery of the mucosa. Again, please google it and you will read dozens of reports on the positive benefits of Glutamine. It is usually sold in Health food stores or Drug store/ Pharmacies or find a Naturopath who will know where to get it. It will help heal the mouth and throat as well as aid digestion.

Hope this bit of experience I had helps.


thegirlfriend's picture
Posts: 147
Joined: Sep 2009

My boyfriend is going thru the same issues, he is 4 weeks post treatment. he gets pretty depressed about it because he just keeps waiting for the turning point that hasnt come yet.
he too has been told his tumor is dissolved and that is great but he just wants to be without some of that mouth pain. He is able to get down water and a little coffee, so he is doing some swallowing but he feeds himself with a formula thru the feeding tube which he had to get like 3 weeks ago after a 50 lb loss. thought he could do it without the tube but gave in. he eats only the 3x a day as well. He is waiting like you are for the corner to be turned...

Craig_Griffin's picture
Posts: 52
Joined: Feb 2009

It is great to hear that your husband is doing well. In my case I had stage 4 tongue based cancer. I got virtually no sleep for about 2 months due to waking up choking. Regardless keep up the good work as a caregiver. Also don't forget that with radiation your husband may take some time to recover. I am cancer free for 14 months now after 40 courses of radiation, and am still recovering to perhaps 80% of my abilities before cancer. But I value life a lot more now, and cannot thank my caregivers enough. They were my sister, mom, step-dad, and aunt. I was too much to handle for just 1 relative asa caregiver. -Best wishes, Craig.

Kent Cass
Posts: 1898
Joined: Nov 2009

Craig and Janet- the importance of the caregivers cannot be understated, by us. Craig- keep the fight, and Janet- keep the care. That's how two fights can be won.

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