So far..

[julieann]

About a year ago my dad was diagnosed with arthritis in his shoulder; come to find out that it was a pancoast tumor on the top of his right lung which was causing him an unmanageable amount of pain. After him demanding different tests that is when he found out that it was the tumor. He went through 25 radiation treatments and chemotherapy. this was done to reduce the size of the tumor so he could have the operation to remove 1/3 of his lung and onr rib and break another. In the process it damaged the nerves in the brachial plexus that lead down his right arm. The surgery was a success. The doctors even used the word "cured." This was great news for my family. After much more chemotherapy after the surgery...which the doctor admitted that he over-dosed my dad on...the cancer is still gone but my dad is still in chronic pain daily. Within the past two months he had a trial period of a spinal cord stimulator put in to try and "trick" his brain.. that means that the vibrations sent through the stimulator would meet up with the pain signals and dull them... this did not work. up until this time he had been on fentanyl patches.. those didnt help; neurontin...that didnt help; oxycontin..that eased the pain but made him hallucinat; oxy IR.. those are easing the pain slightly.

A week and a half ago he had a nerve moved under his elbow to try to relieve some of the pressure that the nerve was under; the doctor also thought that it would be a good idea to do the carpul tunnel (sp?) surgery because it only took 8 more minutes. Now his arm is still in the splint and he is in more pain than ever.

His feet are numb and it is very hard for him to walk. the doctor said its from the chemo and will never go away but his body might get used to it.. However that is what they said about the nerve damage too. After being in chronic pain for a year, my dad wishes he never would have went through with the surgery and that his days will end soon.

I have never had to see anyone suffer so much in my entire life. Especially my dad, who has always been the stongest person that i have known. Im so proud of him for making it this far but will there ever be a solution to this pain? I hear that some people have survived this for over ten years? How did you get rid of the pain.. Please help us we are lost and suffering greatly.

[RandyW]

I can not speak on experience in a lot of this because I did not have the same experience as you are having with Lung Cancer.

I can say that pain management is #1 Priority in Dads care! No one should be in pain from a treatment. I am glad they got the cancer.

A quick link that might help is this one. A lot of our members also use this site as well for technical questions and answers so you will see some familiar faces over there from this site.

Try http://cancergrace.org/ for more info and until you get some answers better than what I have!

Hugs and Prayers for You and Dad and family!!!

[Joppette]

Julie,

This story breaks my heart. My Mom did not pursue treatment as extensive as your Dad did. However, after surgery, she had excruciating pain in her ribs that persisted through the last 9 months of her life. The pain in her bones was horrible.

Now that I reflect back, I think I forgot that she had surgery, and the ensuing pain in her ribs.

Sadly, it was not until we put her in Hospice care that we got the pain control we needed. The normal medical care was not willing to go to the lengths needed to help with her pain. Once she was in Hospice, they took over and valiently fought for pain control.

She went to several "pain clinics" for other solutions. But the bottom line was that, with Hospice help, she had several Duragesic pain patches on her back, and in addition had liquid morphine. We would date the patches, so we knew when to remove the old ones and add new ones. She had the liquid morphine for when the pain broke through the patches.

PM me if you want to discuss this further.

Judy in MI

[ronvrens]

Hi Julieann

When my wife was diagnosed with the lung cancer she had no symptoms except the severe back pain.

At that stage nothing relieved the pain so the onc prescribed Temgesic sublinguel tabs. These really worked in relieving the pain before the effects of the radiation to the spine and femur became effective.

They also work very quickly as they are disolved under the tongue.

I think you should look at Temgesic on the internet as there is a good write up and it might be just what you are looking for.

I must say here in South Africa they were a bit hard to find and expensive but the did the job and I felt it was worth it.

Hope this helps

Ronnie

[Katy66]

Oncologist should be able to provide you with a script for duragesic patches. If there is a palliative care provider in your area you might want to check into that. Most are associated with a hospice but they provide a different level of care, mainly pain management and chronic disease management.

[Alan]

Dear Julianne, I'm 60 years old. I have the same pancoast as your dad. All the same pains, All the same experiences. I couldn't have surgery though because the tumor invaded my spin

e at T1 vertebrae. All the nerves come out of there that affect several things. Ulnar nerve, voicebox. The damage to the spine should be visable on CT scan. It's not carpal tunnel, It's not a nerve on his elbow. The nerve damage isat the spine or plexus.

I've been on all those drugs you mentioned and more. It only feels good when you are asleep. Percacet will take some of the sting out of it and help get to sleep. only good for 4 hrs. I've been out of treatment for 1-1/2 years. It's worse now than before. 2 different highly regarded neurosurgeons looked at me and my scans and say there is no surgery that will fix it. I was told from the start that I may or may not be a candidate for surgery because of the proximity to the spinal cord. I expected to get surgery, heal and return to work. I tried working but was ineffective. I have very little grip in my right hand. I qualified for disability. It helps alot. I'm currently looking for answers too. I wrote the Drs. at cancer grace. they responded negatively. The onc. started me on neurontin 300mg/day. that is a starter dose only. I feel no effect. I see where some patients take 3400/day. I plan on pursuing that along with anything else the pain management drs. and neuro drs. reccomend. My tomor is redused to scar tissue at this time. Some say the healing of the bone may be applying added pressure. I'm no expert but I have been and still am going through it. Pancoast survivors can live a very long time. I know of 1 with 18 yrs. Some of what ales us as survivors has to be considered "battle scars". I am willing to accept it if I must, Without this neuropathy though, I'd feel almost 100%. If anything comes up, keep me in mind as I will you. Alan in Pa.

[Alan]

Hi julianne. Me again. I remember my onc telling me about chemo affecting my feet that way. It's .only on the bottom of toes and balls of feet. She said when I get that feeling, I'm ready to stop chemo. I said Heck, I felt that 2 weeks ago. They stopped chemo then. The feeling finally went away but I've read some people never got rid of it. called it neuropathy too. I don't think so.

[julieann]

Alan,

My dad was taking 900 mg of the neurontin 3 times a day for almost 8 months. We were trying to decrease the number of medications that he was taking so one day he just stopped and didnt notice any difference in the amount of pain that he was having. Last tuesday we drove to MN to the Mayo clinic and they prescribed him some ketamin and lidocane mixture of a cream to apply to his arm and shoulder. He has used it twice now, he said it seemed to help a little bit. he also got a prescription for cymbalta its an antidepressant i think but the doctor mentioned that it should help with the pain. The only bad part of that is we havent tried it yet because it is $400! his insurance hasnt agreed to pay for is so far. They also mentioned trying Lyrica if this does not work. If that does not work they want to possibly try to implant a pump under his skin to put medication in that way. I dont know if that would be the morphine or something else. When we go to visit our doctors here in SD i will let you know more!

Thank you so much for replying to my post! God Bless you Alan! Stay strong.

[Alan]

Julianne, Hi again. I'm really sorry about your dad's pain. If your onc. admitted to ODing the chemo, that's probably the .numbness in his feet. I don't think narcotic type drugs are right for neuropathic pain. ( morphine, fentinol and the like) they may mask it some but not relieve it. Lyrica worked for me, and can be used in large doses also. Did he stop the neurontin abruptly without talking to his DR.? That's usually not a good idea. At this point for me anyway, I'm glad I could'nt have surgery. I watched the operation on the web. It was the rear approach where they remove ribs to gain access. It looked brutal. I'm sure the recovery was extremely hard. I do honestly believe all his pain comes from pinched nerves near the site of the original tumor and incission. Healing and scar tissue can apply pressure to nerves there. MRI or CT scans might even show that. A certain amount of nerve damage could be perminant, I don't know that for sure. Ther may have been nerve damage in surgery. The elbow, wrist, front of shoulder, and right hand especially the pinky and ring finger numbness tingling and pain are all typical symptoms and results of "pancoast". For example, I no longer sweat on the right side of my head. My right pupal is way smaller than the left one. These symptoms are also common to "Horner's syndrome. You could google or bing those 2 subjects for more info and maybe links to more help. At least mention this stuff to your DR.s or find one who is more familiar with it. Sometimes a dr. will give you sample drugs from their drug closet and find ways to get you some cheaper. ASK ASK ASK. Randy is so correct. We should never be in pain. ALAN

[RandyW]

thanks for sharing that information!!!

[julieann]

ok we finally got the insurance company to cover some of the cymbalta! yay! Im so excited..Dad has been using it for a week now. He starts off taking one pill for a week, then two pills for a week then three pills a day from there on out. He said that he slept GREAT the first night! he also takes tamezpam to assit in sleeping so with the one cymbalta and the sleeping pill he got some relief for the night. He did wake up sore the next day though because we think that he moved his arm alot more during the night bc he slept so well and did not wake up each time that he moved.

Now my concern is that he is really having a terrible time getting motivated because he is hurting so bad. He doesnt want to do anything accept sit or lay down. He starts physical therapy this coming wednesday as his legs and arms have lost so much muscle. he is very nervous to start but i keep encouraging! i tell him that i am so proud and happy that i have such a stong dad to get through this! and i truly mean it!

My question is though Alan, how do you get motivated to do things and what kind of things can i suggest my dad to do that wont put him in so much pain??

[Alan]

Hi julianne, I'm sorry to hear about the pain your dad is in. Mine is constant but tolerable. It seems the more active I am, the more I'm able to ignore it. Yard work won't do itself an I certainly can't afford for someone to do it for me. I can't work hard for long before I'm struggling for air. It's all very frustrating more than painful. They gave me one of those puffers for those times and it helps some.

I guess I didn't uderstand that they operated to "relocate" the ulnar nerve? I must say,I've never heard of doing that. I'm no expert but that sounds drastic to me. Donna's pains and mine sound different than your dad's. Did you ask the Drs. at Cancer Grace about this? Two Dr.s I talked to told me they couldn't do anything. They say that healing and scar tissue are applying pressure to nerves in the plexus including the ulnar nerve. It felt alot better after chemo and rads. Time has made it worse, so I tend to believe them on their dx of pain. Plus , now he has scar tissue from that operation too. Maybe a combination of physical therapy and some other things could help. They gave me neurontin. It helps some. I wonder about accupuncture and some other things too. I've had massages that gave me alot of temporary relief. I wish I could be of more help. I do understand the mental fatigue. Did he see a neurologist lately? Sometimes you really have to bug them and make them earn their pay. Ambien is great at night too. I have trouble getting comfortable enough to even fall asleep. I am reluctant to give medical advice, but I can't stand hearing about people suffering. There has to be something or someone who can help him.

[jaminkw]

Well Julieann, I wish I'd read this post first. It sounds like immobilizing isn't what they recommend if he's starting physical therapy. And if he's doing therapy, does that rule out hospice? I think so if it's considered treatment. I think that worst thing in this day and age is for lung cancer survivors to have to exist with pain. Keep us posted, o.k.?

Judy in KW

[julieann]

physical therapy is going good in my eyes..Dad thinks its a waste of time but anything to get him outa the house puts a big smile on my face! He did sit outside and enjoy seeing his grandchildren run around and shoot off fireworks for the fourth! Im so happy to have all the support that you guys have given me!!

GOD BLESS!

[julieann]

Well its been awhile since i have posted anything. I just wanted to share that dad is doing better, physical therapy didnt do much, he gets very dizzy now were not sure why. He tried to go back to work but couldnt, since he was a truck driver it only worked for a few weeks. He is still in chronic pain and his feet are still numb. He describes that his arm feels like it weighs 900 pounds. This has been two years now. GOD BLESS EVERYONE WHO IS GOING THROUGH THIS! STAY STRONG!

[jaminkw]

Julieanne, so sorry your father is still having chronic pain. Have you checked for a hospital with a pain clinic. I know there are facilities now that deal solely with pain. It can just destroy one's quallity of life. The numbness is nother issue. I'm glad he faced the fact that he cannot drive a truck. My brother-in-law recently had an accident with a van because he won't face the fact that he can't drive anymore with the numbness from diabetes.

Glad your Dad is "doing better" but he needs more than that after two years. Have you visited cancergrace.org. The doctors there answer general questions free of charge.

Judy in KW

[RandyW]

Pain management is priority number one !!!