Post Treatment Issues

I'm a physician now 14 years out from metastatic squamous cell carcinoma of one tonsil followed by radical neck surgery and 6 weeks of twice daily fractionated radiation therapy. Over the years I have personally encountered many adverse transient & permanent complications associated with treatment. While I have often thought about going on-line as a resource for patient experiences, this is the first time I have actually done so. I am willing to share my own personal experiences as a patient and compensations I have learned over the years for those facing treatment. One problem I personally faced over the years was a lack of other folks who had been through treatment or were long term survivors to discuss issues with. I did not undergo any form of chemotherapy so will not be able to comment in this area. If you are a long term survivor, I would also like to hear from you on issues you have dealt with over time.

Sincerely,

Loui Elfrink

Bless you my dear doctor for coming on to this site and discussing your treatment issues. I think most of us have come to this site to learn...the good and the not so good. I have many post chemo issues so we are not on the same page but we can certainly understand the pain and suffering that follows treatments.

Here's what I've recently discovered - that every symptom I have is blamed on the chemo. That notion could have severely crippled or even lead to my death had it not been for a newspaper article I read on a medication I was taking and its serious side effects. I had every symptom...stopped taking the medication and the quality of my life has done a complete turn around. We, as patients, need to be very proactive in our own care. We need to be reading, going on sites like this to learn from each other.

Thank you for being willing to be a patient on this site. I know we will all have lots to learn from you.

Blessings to you and your family.

Molly

 

On 2/16/2008 Froggy54 wrote:

I'm a physician now 14 years out from metastatic squamous cell carcinoma of one tonsil followed by radical neck surgery and 6 weeks of twice daily fractionated radiation therapy. Over the years I have personally encountered many adverse transient & permanent complications associated with treatment. While I have often thought about going on-line as a resource for patient experiences, this is the first time I have actually done so. I am willing to share my own personal experiences as a patient and compensations I have learned over the years for those facing treatment. One problem I personally faced over the years was a lack of other folks who had been through treatment or were long term survivors to discuss issues with. I did not undergo any form of chemotherapy so will not be able to comment in this area. If you are a long term survivor, I would also like to hear from you on issues you have dealt with over time.

Sincerely,

Loui Elfrink

I have been checkin this site on and off hoping some longtime cancer survivor like me who have certain issues such as side effect from cancer treatment. It will be 13 years this coming August since diagnosis of lung cancer. 11 years on remission after 2 years of treatment. My issue is and perhaps forever will is my chronic neuropathy and fibromyalgia that I have been suffering for nearly 11 years. I am thankful for all the treatments I recieved.  they really did extended my life. with that extention, I was able to finished most of my obligations that was not yet completed. I have been taking pain reliever for all that time and to this day. Since you are, a physician?, do you think my pain issue were all related to both radiaton and chemo as I was complaining to most doctors I've seen in the past? Or should I really need to convince myself, it's all in my head as for everyone around me are saying? I've isolated myself completely from everyone. I have just gotten tired of listening to their comments including comments from some doctors. What do you think? By the way pain pills do not make me high in any way, it only minimizes my pain to help me live my life with quality.

Congratulations on beating the odds and surviving. I am responding as a fellow cancer survivor and not from the prospective of being a primary care physician. Any comments I write are not meant to establish a patient-physician relationship or provide medical intervention. All issues should be discussed with your personal physician.

I do feel that both Myofascial Pain Syndromes, fibromyalgia being one type, and chronic neuropathic pain syndromes may follow prior chemo or radiation treatments. Whether you have Fibromyalgia or another Myofacial Pain Syndrome is unknown. My own personal experience is with chronic neuropathic as well as myofascial pain stemming from both surgery and radiation nerve damageas a reult of my treatments. I have not personally taken chemo. When you look at Myofacial Pain Syndromes including Fibromyalgia your primary care physician has probably already considered other possible contributory causes like Hypothyroid, Polymyalgia Rheumatica, medication related like statins to lower cholesterol or anti-viral agents, cervical (neck) stenosis around the spinal cord or foramina where nerves exit the spine, other ongoing malignancies, tick borne disease like Lyme, chronic hepatitis C and other so called auto-immune disorders. Common interventions include consistent exercise (as tolerated), pain mitigating agents like Ultram, Neurontin, Elavil, Desyrel, Zolft, Zanaflex, Flexeril, Cymbalta, & magnesium + malic acid. Opiates like Lortab, Percocet etc and anti-inflammatory pain meds like Naprosyn, Motrin etc. are usually not recommended for Fibromyalgia but may be indicated for other Myofascial Pain Syndromes. There is no one agent fits best rule. You can even see physicians specializing in chronic pain these days but you should do your homework first and see if the one you are about to see has any real world experience with cancer patients.

Neuropathic pain is a very complex subject with host of causes and best dealt with a Neurologist with an interest in the area. Again, there are lots of treatment considerations from topical agents to oral meds.

In your head? Probably not. As a patient I flew down to MD Anderson in Houston, Texas for a second opinion concerning symptoms from extensive damage I incurred as a result of past twice day radiation therapy. While there is no current treatment for my nerve damage, I was most impressed by the professionalism, compassion and expertice I encountered. Second opinions for peace of mind sometimes are worth the effort.

Isolating oneself from others? Lots of possibilities here from completely benign (no big deal) to serious depression and a spectrum of other considerations in between. If you're not comfortable with the situation and worried about depression, hopelessness etc, you probably should make a trip to your PCP. If your comfortable/generally okay with isolation, then so be it.

I wish you many, many more healthful days.

As a patient, one always must be suspect of all medications that enter the body when experiencing new or unusual symptoms. I learned this hard way a few back as the patient. I have hypothyroidism that followed radiation treatment and have to take daily thyroid medication. There are trade name and generic substitute meds for many medications today. I was on a trade name drug but unknown to me at the time my pharmacist had substituted a generic when I dropped the med off for a refill. Within 2 days I began to feel profoundly fatigued. I was as tired in the mornnig after being in bed all night as I was before I went to bed with no clue it was my medication. I made an appointment with my ENT physician and my personal Internal Medicine physician over the ensuing month as I was barely functional. I was really beginning to believe my cancer had returned. Blood work and physical exams were normal. Both physicians including myself remained clueless. At 6 weeks and still completely exhausted, I began to think back to what may have changed in my life at the time the symptoms first showed up. Finally the lightbulb came on as I recalled refilling my thyroid medication. I went in my pharmacist where he discovered the med given was a generic substitute and not the trade name I had been on. I switched to trade name and within 48 hours the severe fatigue lifted.

This in no way should discouraged anyone from taking generic medications as there are considerable savings in doing this. However, if one begins to experience unusual symptoms from a  type of medication they were taking previously without incident, one must be suspicious and talk with the doctor and pharmacist.

Hello Loui,  Thanks for your posting.  I finished my treatment, chemo and radiation, for tonsilar cancer last Summer.  Off and on, I get slight "awareness"  in my lower jaw around sites where I have had dental work.  I wouldn't say it is pain, and it seems to migrate around the are.  i don't have cold or heat sensitivity either.  I go to the dentist regularly.  I'm so paranoid of osteonecrosis and am not sure of what dental work i can or cannot have.  Would this sensitivity be just a side effect of radiation?  Thanks for your posting.  Tara

i was diagnosed with colon cancer stage 4 in 2004. after the surgery(colon resection) i had chemo for 6 months and went into remission briefly and then had to do chemo again the scan was clean so i had a brief no treatment time 6 months until it returned tiny tumors behind my abdomen and spine inoperable. i asked if the cyber knife would help and my dr said yes. it was the most painful treatment i had to date. even the morphine didnt help. that was quite a surprise to me i didnt think the super radiation would be painful but it was. like hot rocks in your body. and it proved to be a failure in fact it spread! so i was back on chemo and have been on xeloda chemo pills. pain is minimal but present in my sides but the tests show no cause of that mysterious right side lower pain. one er dr told me maybe nerves were damaged in my colon resection surgery years before and no test will show that, i went to stanford university for a second opinion and after traveling from tx to ca and waiting 6 hours for the dr he spends about 15 min with me telling me if i had a caretaker for my 10 yr old son because he guessed i would die in 2 years. can you imagine the shock i felt. i almost hit a car leaving the place my mind was in shock. then i got mad, i didnt want to hear bad news i wanted to hear words of  wisdom and hope! i refuse to buy in his oponion and now its 1 1/2 year later since that dr visit. i plan to call him and say hello at the 2 year mark to prove him wrong, anyway i think i'm proving the stats can be wrong since i am alive. i also think alot has to do with the mental attitude, i think of this diease with no respect and go about living my life to the fullest i dont cry or whine about it, everybody is going to die why do they all freak out so much what surprises me is even the older folks are so scared of dying. gee when its my time i will finally get some rest.

Doctor,

First off thanks for your willingness to offer some help. I would like to suggest that perhaps you set up a website instead of just doing it in this forum that people can go onto and read whatever topic of the day you choose, and have a Q&A section, plus a section for patients to blog to eachother. It doesn't have to be a big fancy website. Once set up, you could post the address and be up and running. You could get perspectives at all stages from patients and follow them along their way. Could select someone who was just diagnosed and follow their progress, get someone like me that is in treatment, someone just finished, and so on. It could really be a great thing for all of us non-medical types. My 18 year old daughter will be starting TCU in the fall wanting to become a Dr. I pray she has the compassion to give back to help those of us that have concerns and questions all the time as you seem willing to do. I am a retired business owner and would be willing to assist you in anyway you need. I have plenty of free time.

Again, thanks for your willingness to help those outside of the treatment room.

Rick

 

On 2/16/2008 Froggy54 wrote:

Congratulations on beating the odds and surviving. I am responding as a fellow cancer survivor and not from the prospective of being a primary care physician. Any comments I write are not meant to establish a patient-physician relationship or provide medical intervention. All issues should be discussed with your personal physician.

I do feel that both Myofascial Pain Syndromes, fibromyalgia being one type, and chronic neuropathic pain syndromes may follow prior chemo or radiation treatments. Whether you have Fibromyalgia or another Myofacial Pain Syndrome is unknown. My own personal experience is with chronic neuropathic as well as myofascial pain stemming from both surgery and radiation nerve damageas a reult of my treatments. I have not personally taken chemo. When you look at Myofacial Pain Syndromes including Fibromyalgia your primary care physician has probably already considered other possible contributory causes like Hypothyroid, Polymyalgia Rheumatica, medication related like statins to lower cholesterol or anti-viral agents, cervical (neck) stenosis around the spinal cord or foramina where nerves exit the spine, other ongoing malignancies, tick borne disease like Lyme, chronic hepatitis C and other so called auto-immune disorders. Common interventions include consistent exercise (as tolerated), pain mitigating agents like Ultram, Neurontin, Elavil, Desyrel, Zolft, Zanaflex, Flexeril, Cymbalta, & magnesium + malic acid. Opiates like Lortab, Percocet etc and anti-inflammatory pain meds like Naprosyn, Motrin etc. are usually not recommended for Fibromyalgia but may be indicated for other Myofascial Pain Syndromes. There is no one agent fits best rule. You can even see physicians specializing in chronic pain these days but you should do your homework first and see if the one you are about to see has any real world experience with cancer patients.

Neuropathic pain is a very complex subject with host of causes and best dealt with a Neurologist with an interest in the area. Again, there are lots of treatment considerations from topical agents to oral meds.

In your head? Probably not. As a patient I flew down to MD Anderson in Houston, Texas for a second opinion concerning symptoms from extensive damage I incurred as a result of past twice day radiation therapy. While there is no current treatment for my nerve damage, I was most impressed by the professionalism, compassion and expertice I encountered. Second opinions for peace of mind sometimes are worth the effort.

Isolating oneself from others? Lots of possibilities here from completely benign (no big deal) to serious depression and a spectrum of other considerations in between. If you're not comfortable with the situation and worried about depression, hopelessness etc, you probably should make a trip to your PCP. If your comfortable/generally okay with isolation, then so be it.

I wish you many, many more healthful days.

doctor,

responding to your message you posted did not mean I was looking nor expecting doctor/patient relationship. as I said, I was a bit thrilled ( please no offend intended here) that finally a physician whom I thought have immunity toward this horrible disease become one of us. was a patient and now a survivor. my question to you is, how do you approach your patients now when they come to you with various complaint? especially those who are complaining about aches and pain. Is it the same as it  was before the disease came into your life? or is it now with a little understanding and compassion? I was very upset with one of my oncologist/radiologist at one point while having the daily routine of radiation overhearing them discussing one of the patient complaining of too much pain and them calling her a sissy. I went home in tears from the pain from the radiation and anger. I told my daughter, I wish that table turn around and him lying down in the same table so he can feel how we patients feel. Lord didn't it happened. 3 years after my ordeal. he then went to local channel 4 tv and told the media how he approach and deal with his patients afterward. of course with better understanding and much respect than before. his name is DR LEE from oakwood hospital. I never intended or wish this ordeal to anyone. people should be careful of what they say to others being a whinney and sissy.

Thank you doctor for sharing and being a long term survivor.  I am going on 2 years since my dx & left tonsil SCC and left side disection.  I received 35 treatement of radiation and 7 treatments of chemo.  Went through horrible hell and back.

I am very interested in the long term side effects.  I have terrible dry throat and lower jaw pain.  Some taste has come back and feel the taste is mainly from memory.  I've heard that through out the rest of my life, I will always have somewhat of an eating problem.  It is very hard to gain weight since this incident.

 I pray about this dry mouth situation which is the worse I can complain about, gets some what better.  I have bouts of terrible mucous just daily, don't know what it comes from or why I have it, but know it is a result of radiation I'm sure.

I am truly grateful I am here today, and more grateful to find someone long term.  It give me such wonderful hope at this moment.  Thank you for posting and speaking of your symptoms through these years.

 God Bless you!!!!!