After neck/oral IMRT how long on pain meds?

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After neck/oral IMRT how long on pain meds?

by Sandyx5 on Fri Sep 14, 2012 05:42 PM

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Before most recent cancer/surgery, I have a very long history (25 years) of oral cancer/surgeries and excision of pre-cancerous lesions that have have been so numerous that I lost count well into 20+.  

Surgeries have included multi thicknesss skin graft to inside of cheek from thigh, repeated "debriding" of gums, removal of teeth, repeated excision of buccal musoca (on same side), scar tissue contraction that has resulted in limited opening of mouth, scar "release" surgery (it last only a year or so then contracted again), removal of portion of hard palette and small section of mandible at alveolar ridge.

Buccal mucosa and gums are hypertrophic and keratinized. Also, extremely sensitve to touch, spicy foods and any stretching of escharified tissue. Slowly over the year, my oral opening had shrunk to the point where eating had become more and more difficult. I've had no teeth with which to chew for many years. However, I gum anything because all mucosa is so sensitive....hence cannot be fitted for orthotic denture. Jaw bone too soft for implants to take...besides too expensive.

For years, the only reason I can get anything into my mouth was because of no upper teeth to get in the way.

I also have fibromyalgia, severe degenerative disc diease in both cervical and lumber regions. This causes extreme pain in my neck, numbness and tingling down into my arms. Also, I have lateral shift in (can't remember at which vertebrae) lumbar region which causes pressure on my sciatic nerve, which causes (at times) debilitating pain to run down my backside to my leg. My back surgeon does not want to start fusing discs until that point at which I am no longer able to walk or am unable to live with the pain.

I have other health issues but won't go into those as I think I've told you enough to understand that I have spent most of the last 20 years living with considerable pain...with very little in the way of pain meds until recently.

Last fall a swollen lymph node turned out to be squamous cell cancer. Oral biopsies showed nothing but normal dysplastic, hypertrophic, keratinized tissue. One of my surgeons said, "It looks like it alweays does in there.....like hell."

I had a modified radical neck resection on March 29. I was sitting up in my bed going into my room after post-op. I would not take anything for pain. I was allowed to go home the next day...and weanted no pain medication. A week later, I called and got a Rx for codeine and APAP.

Biopsy results from tissue "excised" (debrided entire left side of my interior cheek from upper teethless gums down to the lower mandible and it's teethless "gums") indicated malignant cells...though none showed up on the pre-op PET/CT.

34 lymph nodes were removed. Post-op lyphedema was horrid but pain was controllable (for me...as you can tell I am a tough bird) with codeine. However, when the new tissue began to grow back in my mouth...it grew back in incredibly sensitive to touch (even my own tongue...which still did not move too swell as anyone knows who has had radical neck resection), cold air, cold or hot liquids and just sitting there. As this tissue grew, it became more and more obvious that something new and horrid was happening. This new tissue was freaky painful. I told my new surgeon (as old surgeon was no longer operating) and he nearly yelled at me...saying that only option was cutting me from mid-neck up through mouth and flapping mouth open...removing bone and even then he didn't know if he could do anything to help me. He had me in tears....simply because I wanted to know if this pain tissue was going to be like this always. He has the beside manner of a snapping turtle. I dare not broach the subject again.

Meantime, there I was four weeks post-op being told that I needed to see both a radiation and medical oncologist. I did and radiation oncologist got me. No chemo "warranted". I started 33 IMRT treatments (with final 7-8 being "boosts"...lovely that).

I started rad 8 weeks post-surgery. Two weeks into it I needed something for pain. I could no longer swallow codeine and it doesn't touch the pain. I am now 8 weeks post-radiation. I was on 25mcg Fentanyl for last four weeks of rad plus Roxicet as needed. As I have always exhibited a high pain threshold and I have always taken myself off narcotics ASAP (pr even refused them), I asked to start weaning from Fentanyl and go to 12mcg patch. I tried it for 9 days.

After four months of broken and neglible sleep (eversince surgery), I was finally sleeping 4-5 hours at night and sometimes even in my own bed....when I asked to reduce Fentanyl dosage. What a mistake. Sleep became impossible. I was taking Roxicet evert 3 hrs instead of every 7-9 hours that it had been. The pain was too intense to concentrate nor sleep. Nearly five months of sleep deprivation was killing me. Not to mention, I lost 25 lbs from date of surgery to completion of rad. AND have lost another 25 lbs since finishing rad 8 weeks ago.

I can open my mouth far enough to shove a pill in. I cannot fit a spoon or fork into my mouth. That's okay because swallowing anything more than liquids is damn near impossible. I survive on Ensure, Boost, buttermild and Carnation instant breakfasts. Oh, I try "solid" food every now and then. Forget it. I can't taste much of anything. Or to put it more bluntly, most everything tastes like crap. The mouth "feel" of soft food is like wallpaper paste with sand in it. Soft food (aka apple saice, mashed potatoes, pudding etc) sticks like peanut butter to tissue that hurts like royal hell if my tongue touches it. Even the swish of warm water around in my mouth is damn near impossible because of the pain the water creates.

Oral care is baking soda. I do have a baby toothbrush that I put some non-alcohol toothpaste I found (called "Oral Defense" in case anyone need a toothpaste that doesn't burn...can only find online). First I use pink swizzle (which burns like hell until topical anesthetic kicks in) and then I can gently try to get the toothbrush in to lightly, gently get hair off the back of my five remaining lower teeth. Of course, I bleed profusely after this "oral care". I rinse my mouth time and time again with tepid water to make sure the bleeding has stopped.

I forgot to mentioned. I have no saliva. Nada. Zilch. Mucous is my saliva....which of course I can't swallow...I spit it out into a Kleenex or sip some water.

I called the RN at radiation oncology department where I had rad. She was quite nice but kept asking me to calm down. You see, I have asthma, too...and when I get too "emotional" I have an asthma attack. Lady, honest, I don't do it on purpose. I can't sleep, can't eat, have no joy in my life and certainly no quality of life....but heaven forbid I cry about it. Maybe I am tired of being strong and finding a way to gut it out, cowboy up or be a wo*man.

I'm 65 year old, retired, diabetic (ha....haven't been able to swallow Metformin in months) pretty indestructible (or so I thought) old broad. I've met my match. Between oral pain, lyphmedema, my scalded tongue and blistered throat ....UNCLE already.

I think the rad oncologist is going to "allow" me to go back on 25mcg patch again...as it was my idea to drop to that dosage. When I asked to do it...she said "Are you sure?" Stupid me said, "Sure." never again.

Then the RN said maybe I need to go to a pain management clinic. Huh? What...is this pain in my head now? Lady, you're talking to someone that got up off the damn cart and waited while they got the bed into my room when I was post-op after having surgery in March. Everyone was astonished at my chutzpah. I use to be a very strong woman. No more. Here is the new me.....hurting and needing relief. What do I get? A friggin' lecture. "Now, honey, you need to calm down." Argh. You have to be kidding me. Let's see you go five months of sleep deprivation...mayb an hour here and a half hour there....having to get up and out of bed after sleeping only 30 min because lying on my back (which I must do because of disc problem) makes me feel like I can't breath. So I go to my chair in the living room and sit there until I drift off for a few minutes....until time for my next dose of Roxicet.

Please tell me that it's going to get better. Because right now I see no reason to live. Is some nincompoop going to tell me that I have to live with this pain without opiate? No way I can do that. Even reducing dosage was evil.

I can't open my mouth, I can't chew, I can't taste, I don't have any saliva, I can't sleep and "Listen, honey, you need to calm down." Condescention is not at all palatable at this point. My personality becomes more and more like Sofia from Golden Girls every day. I tell it like it is. It takes too much effort to suffer fools.

I have an appt with my PCP to discuss an anti-depressant. I think that boat is overdue.

I don't need advice about eating. All I can handle is liquid. Fortunately (ha ha), I am morbidly obese (50 lbs less so now) and losing 10-15 pounds a month is not such a bad thing. However, I tear up at every restaurant commercial.

Thank goodness I am overweight. What in the blazes do you regular size folks do when you can't eat? It must be horrible.  

How long do people "normally" stay on the more potent narcotics after rad? My problems are compounded by pre-existing oral problems. I am between a rock and a hard place. I must have been one hell of a nogoodnik in a past life. I've had oral cancer five times now. By all rights, I should have been dead 25 years ago...after the first one. But I'm still here. There has to be a reason other than to suffer.

Please forgive me if I sound whiny. There are so many of you that have it really bad. Each person's hell is is the worst that each of us knows. Right now I got little sympathy for anyone but myself. I know that sounds selfish but right now I'm the only one that knows or understands just how tough it's been all these years....and now this. You'd think I was an octopus...what with all those "other" shoes dropping.

Sign me,

Is there hope? aka Sandy

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