I'm new here but I need advice.

My mother, who is 75 years old, just completed radiation/chemo and is back home. At first she was on a feeding tube, but that has been taken out.

She won't eat.

She keeps saying that nothing sounds good to her (no taste, saliva, etc..). Plus, everytime she tries to eat, the pain is unbearable still. She is also consuming very little fluids.

We don't want her to have to get another feeding tube, as she kept having trouble with it staying in and the hospital is not closeby at all.

She's also very depressed right now, talking about wanting to go *home* (heaven). We think that, in a way, the not eating is part of this also (the treatment was SO hard on her).

I don't know what to do. I would appreciate any and all words of advice or what brought anyone else out of this period of their treatment--coping skills would be great, or methods of alleviating the pain (the numbing mouthwash is too painful to even put in her mouth, she claims).

Thank you so much.

Hi Sarah'sDaughter,
She should have more for pain then the magic mouthwash.......is that all she has? If so, you need to call her doctor and demand pain control. There are grown men on this forum that used strong pain medications for months after treatment ended.
Her depression at this time is very common. She is done with treatment and now may feel like she isn't doing anything to fight the cancer. Almost all of us on here had depression at the end of treatment. Medication can also help get that under control.
Why did they take her feeding tube out?? I had a feeding tube and didn't have it taken out until almost 7 months after treatment had ended. And I used it up until they took it out.
Please let us know a few more details.
I will keep you and your mother in my thoughts today.
Minnie

Minniea-

What type of feeding tube did you have (nose/directly into stomach)? Were you able to feed yourself via the tube, or did you need help? My mother had one in the nose and we had to keep going over to her house to do the feedings. We hadn't pushed for her to do the feeding herself because we figured it wasn't something she'd be able to do, but maybe she could?

Also, my mother keeps refusing any pain meds, for fear she'll become dependent. How much of an addiction could she acquire? Isn't she being unreasonable for only being out of treatment one month? She was also upset at how loopy the meds made her. She didn't know what she was doing half the time and it was very distressful for my father, who kept threatening to put her in a nursing home (not that he's a mean husband, but she was really quite dangerous trying to leave the house, pulling out her own feeding tube because in her loopiness she didn't know what this thing was that was hanging from her nose). Do you think that if she took the pain meds in lower doses she might be all right? (Previously, she was taking 1 tsp of oxycotin overy 4 hours, per doctor's prescription).

Her doctors are 3 hours away, making this whole experience feel like we're "going it alone." Thank you for responding--just your few words has really opened my eyes to what might be the problem (she and us are expecting too much after such a short time, she needs a feeding tube, pain meds may be a necessity).

BTW, hers was a T2N3M0 on the right side. She'll learn in a couple weeks if the treatment worked.

Hi Sarah's Daughter,

Welcome to this site -- I know you'll find a lot of helpful information here, not only on this forum, but on the many reference sections that you can access from the home page.

I agree with Minnie that your mother probably needs more for the pain than what she is using. Many of us can relate to the fear of addiction that she apparently has, but the fact is that radiation can produce such painful side effects that some type of medication is usually necessary to help cope with this. If she doesn't react well to one medication, please insist that her doctors try something else until you have a program that works for her.

Nutrition is also an ongoing challenge after the end of radiation. The general rule of thumb is that you should expect one month of recovery time for each week of radiation, although different people may vary from that one way or the other. The point is, if she just stopped radiation, she likely won't begin to see noticeable improvement for at least several more weeks. In the meantime, she needs to get regular meals in whatever form she can tolerate -- whether it's the tube or ingesting soft (drinkable) meals by mouth. Everything tends to taste terrible for weeks after radiation, so she can't let her taste buds control what she takes in. She also needs to stay as hydrated as possible -- I know it's hard because I remember how I screamed even trying to drink water at that stage.

Another risk in the weeks post-radiation is mouth sores that can lead to infections (this will only exacerbate the pain). Please be sure her doctors have told her what signs to watch for so if she needs medication to counteract it, she can be prepared.

Please stay in touch and let us know how she is doing.

Cathy

Hi Sarah,
If she were my mother, I would first address the pain issue. If vicodin isn't working for her, then her doctors should have tried something else long before now. Call them and DEMAND that they find a protocol of pain management that will manage your mothers pain. If they don't take action, call a different doctor. Once her pain is under control I am quite sure she will feel worlds better and then she can focus on her recovery.
Second I would take care of her nutrition problem. I cwas 41 when I had my radiation treatment, over 30 years younger then your mother, and was in excellent condition when I received my diagnosis of cancer. I couldn't eat enough by mouth to keep my nutrition level adequate for MONTHS after radiation ended. She needs good nutrition in order to heal so I would look into a tube for her. I'm really surprised that her doctors took her tube out so early, and more surprised that they didn't put in a PEG (stomach) tube before she even started radiation treatment. She should be able to handle feeding herself with the tube, either type.
Third, I would address her depression.
It's alot to think about and alot to do, it takes patience to get through it all. But it can be done. You are your mothers advocate right now, a tougher job then being the patient in my opinion. Call the doctors, remind them that they get paid to take care of your mother, and demand that they do their job.
You're in my thoughts.
Minnie

Sarah's daughter, I'll agree with all of the above and add that the depression should be addressed at the same time because it will affect her willingness to fight (or eat). Eating when it hurts is not easy. Pain control is essential. INSIST that they find a combination of pain medications that do not make her "loopy"! Be polite but completely firm with her medical care givers that pain management is your highest priority! Addiction is NOT a common problem and if it happens that can be addressed later.

Let her know that there are people out here whom have been exactly where she is and are now fine. There is light at the end of the tunnel. The period right after radiation ends, is the worst and she should notice improvement soon. It will be slow but it WILL happen. Some here had prolonged pain and difficulty eating. Others (like me) were able to eat fairly soon. For me I used a blender to liquify everything and make it go down easy. Radiation affects both the appitite and the taste of food. This effect goes away fairly quickly. I remember gaining an appitite within weeks of treatment end.

Be on the lookout for Thrush which is a common yeast infection in the mouth and oral spaces. A high percentage of oral cancer patients get this because of the low saliva. It can cause pain, usually a burning sensation. At first her pain might be discounted as normal radiation effects. Sometimes they will ignore the possibility that the pain is really caused by the Thrush.

While I agree with Minnie that nutrition is important, I would not second-guess the tube feeding yet. Get her pain under control and use a blender and she should be able to get good nutrition. Baby food is another good way to get her eating. Another really important thing is hydration. Make sure she is drinking plenty of fluids.

Hang in there for her she needs it and you are doing a great job.

Sarah's daughter,
I would immediately call the doctor and insist on a PEG tube. How can one hope to recover without proper nutrition. I also used the tube to inject pain med if I needed more than just a duralgesic patch and once I got off of the patches. Like Minnie, I kept my feeding tube for many months (10), after treatment ended because I could not get enough nutrition through the mouth.

Best of luck,
Danny G.

Sarah
PEG tube, only way to fly....I still have mine 9 months after treatment.
As for the pain, there is no need for anyone to suffer.....
Morphine, Morphine and more Morphine. Do not worry about the addiction factor, it is not that bad, Just a few miserable days then it's over.

I could have gotten through radiation treatment and the weeks after without a PEG..........I'm tough as nails and if I HAD to I WOULD. I just question the strength of a 75 year old woman?? I have often wondered why I was able to ditch the pain meds the week I was done with radiation, while others stayed on them for a few months after treatment ended. I think the answer is that I did not have to go through the pain of trying to get my nutrition by mouth. I never mean to imply that the PEG is the better way to go, I think it's the EASIER way to go.
If Sara's mother was my age (43) I wouldn't suggest the PEG as strongly. But this is a 75 year old woman who needs all the help she can get with nutrition. Sorry Mark, love you much, but I have heard grown men speak of the pain when they tried to eat by mouth. Sara's mother doesn't need to endure that if it's avoidable.

Since to the best of my knowledge none writing up to this point are medical professionals (including me), and since none writing up to this point have any first hand knowledge of this patient, Why are there suggestions that we know more than her doctors?

We all know about our particular love hate relationship with PEG tubes, but really should anyone be making this daughter uncomfortable with the medical professionals' decision?

I have had first hand conversations with full-grown women describing the pain they endured from the installation of the PEG tube, and the ongoing pain, loss of normal body image, prolonged return to a more normal life, inability to feel able to carry on a love life, infections and odor problems. All needless additional forms of suffering if she is able to control pain well enough to swallow.

My case is rested.

To Sarah's daughter, please don't worry about this particular subject matter. PEG tubes have been argued about here before and we do try to be civil about it. Generally supporters of PEG tubes are folks that had them, and the folks that tend to be conservative about them are the people (like me) that got by fine without it.

If her doctors decide your mother needs a PEG I'll be fine with that.