Cancer patient

[Ripper3455]

I have been battling Cancer for years. Started out as merely Skin Cancers which was diagnosed as resulting from large doses of Chemicals (Dioxin). I served in The US Army in Vietnam. My Cancer over the past year has morphed and now it is attaching itself to tissues under the skin. Muscle, fat, Nerves, lymph Nodes, etc. I have recently had two operations to remove it from my right face. They used Mussel and Tissue from my right Thigh to replace the areas removed. It has left the side of my face paralyzed and loss of hearing in the right ear. The two surgeries were in September than again in November. Now last week I noticed another lump coming up in the same area. PET Scan showed Cancer activity. So today I am off to Philadelphia again to see the Surgeon. In Vietnam I had my face ripped apart by an RPG, I was shot through the Hand, and had a Bayonet stuck through my chest. I was an Army Ranger and did 3 tours over there and saw a lot of action. I am no sissy or stranger to pain. Cancer is a pain that is unforgiving. It never stops. You don't get an hour of breathing time as it keeps pounding you every minute. Now my problem.

I was put on Oxycodone to ease my Pain. I started out with 5mg every 6 hours. That was 2 years ago. Today I am wearing a 25mg Fenedryl Patch and taking 15mg Oxycodone tablets every 4 hours. My problem is I cannot sleep. I have Xanax to use but that really doesn't help. Here is what I take and it helps me sleep for maybe 3 hrs. Then I am up.

1 tablet of Gabapentin which is a Nerve Pain medication, 25gm (sometimes 50) of Alprazolam (Xanax), 15mg Oxycodone, and a shot of ZQuill. In 3 hours like right now I am awake. I have my Medical Marijuana Card. I never used Marijuana before. I tried it and did not like it one bit. It made me completely zonked out and nauseous. I did sleep from it but the same as using the pills. Up in 3 hours. I would like to sleep through the night. My Pain Management Doctor is one of the best there is in NJ. He will give me whatever I need. Instead of Xanax is there anything else I could ask him for to put me to sleep. I function well even under the extreme pain and sedation. I do small jobs p/t at work and go about life as best I can. I just need to sleep when it's time to.

Thank you in advance for any help. I stumbled upon this site through a search so I hope it is active.

Steve

 

[Julesz]

I had several cancers they told me id never make it when I did they said i was the toughest patient in the world because of the increadible 'super human pain' I went through everyone was amazed at me.

 

[Slow_Mobius]

If you're having problems staying asleep, cannabis edibles might be a really good option. They're classically less heady and more sedating when taken at reasonable doses. You could also go for a high CBD strain to get more of the anti inflammatory and body effects to avoid getting zonked.

Also, oxycodone is often described as being a more stimulating feeling opioid. A more sedating opioid might be a better option. I don't have much personal experience dabbling with the many different pharmaceutical opioids, but I'm sure some others can chime in their.

Also, you might benefit from switching the gabapentin for pregabalin. Pregabalin is basically a souped up, modern version of gabapentin. I find pregabalin to be superior for sleep and pain management, although tolerance can build fairly rapidly.

IMO, you should experiment with different kinds of cannabis first and maybe try switching to a different opioid. cannabis would be a much more sustainable option if you can make it work. If you can't tolerant the side effects from the cannabis, then I think pregabalin would be a good thing to try.

Of course, you can always try z-drugs (eg ambien), but they're black-out city and are only effective when they're used sparingly

Good luck. Really sorry to hear about all the problems you have to deal with

 

[Ripper3455]

If you're having problems staying asleep, cannabis edibles might be a really good option. They're classically less heady and more sedating when taken at reasonable doses. You could also go for a high CBD strain to get more of the anti inflammatory and body effects to avoid getting zonked.

Also, oxycodone is often described as being a more stimulating feeling opioid. A more sedating opioid might be a better option. I don't have much personal experience dabbling with the many different pharmaceutical opioids, but I'm sure some others can chime in their.




Also, you might benefit from switching the gabapentin for pregabalin. Pregabalin is basically a souped up, modern version of gabapentin. I find pregabalin to be superior for sleep and pain management, although tolerance can build fairly rapidly.

IMO, you should experiment with different kinds of cannabis first and maybe try switching to a different opioid. cannabis would be a much more sustainable option if you can make it work. If you can't tolerant the side effects from the cannabis, then I think pregabalin would be a good thing to try.

Of course, you can always try z-drugs (eg ambien), but they're black-out city and are only effective when they're used sparingly

Good luck. Really sorry to hear about all the problems you have to deal with

I will ask them at the dispencery about the edibles. Someone else told me the same thing. Either they have edibles or stuff to make edibles with like brownies. The Marijuana is mainly for weight gain. I have lost over 60 pounds and need to get my appetite back.

Thank you for the response

Steve

 

[Agoraphobiaphile]

I feel for you man. If I was you I would be brutally honest with your doctor about the pain because 15mg oxycodone ain't shit. And Did u mean fentanyl? That'd better but very low dose.

Zquil is just diphenhydramine aka benadryl. Doesn't even help ME sleep and I don't have cancer.

That xanax habit is alarming tho. 50mg in a day is a ridiculous tolerance. No wonder it isn't helping you sleep. I don't know what to say as far as that goes..

You could ask your doctor for ambien or something similar. That is actual sleep medication that might help you. And get some better pain meds.

 

[T. Calderone]

Hi Steve. It must be so tough to go through all this pain and not sleeping properly. I agree with Slow Mobius in regards to trying different types of cannabis edibles. They can help with insomnia and pain and hopefully you wouldn't experience the nausea you get from smoking. The trouble with Xanax and other benzo drugs is they tend lose their effectiveness over time.

Do you remember what dosage of gabapentin you were taking? 300 mg makes me pretty sleepy but not if taking it every day. When it comes to sleep aids, I find switching up different meds helps better than using the same one regularly. Welcome to Bluelight and thank you for your service!

 

[LucidSDreamr]

It does seem like you are on a pretty low pain regiment for the amount of pain you have. 25 mcg patches aren't strong at all.

The oxycodone could be contributing to your wakefulness. I know that when I take it I don't sleep at all that night usually. despite feeling sedating its also quite stimulating in a way that it doesn't let you sleep, others have mentioned this as well.

 

[MafiaInsane]

As someone who has and still continues to struggle with severe insomnia for years, in my experience, though medications may (and in your case, absolutely do) play a significant and sometimes vital role, one of the most antiproductive things to a good nights sleep is to rely on them to do all the work.

To be fair, my insomnia has never been caused by cancer symptoms, so my input may not relate to your case so much, but i feel it still is relevant regardless.

At a certain point, after trying countless remedies, medetation, deep breathing, relaxation techniques, and a long list of things like that without the results i wanted, i decided it was time to try a sleep aid.

My problem was that when I resorted to trying medications, i dismissed all the other techniques i had tried and only relied on the pills. I went through a lot of prescriptions, thinking they just didnt do anything, before realizing my mistake.

In my personal experience, I started to consistently sleep successfully only when I utilized both, and found a combination of a medication that worked for me, and a way of helping clear my mind and shut my brain down to do my part as well.

Medications can help, but if youre not able to get in the mindset necessary to sleep, pills will only do so much.

Reading your post, unless i missed it, i dont believe i see you state anywhere that you wake up due to pain. That makes me think its possible that your inability to stay asleep isnt because your medications arent doing enough.

I may be way off, but either way, it wont do any harm to look up some sleep techniques like meditation or deep breathing, as well as things you can do throughout the day that will make sleeping easier at night, like maintaining a consistent routine and waking up and going to bed the same time every day, or whatever level exercise possible, even if its a short walk.

I understand how frustrating it is, but its important to learn to relax, because you are going to have a much harder time falling asleep if you just keep thinking about not being able to sleep or about how your medications arent working.
It turns into a vicious cycle, the longer you cant sleep, the more frustrated you get, and the more frustrated you get, the harder it gets to sleep. Breaking that cycle can only be done by clearing your mind and learning how to relax.

Even if i am wrong, and pain is the main thing preventing you from a full nights sleep, keeping this in mind and trying it while you have your prescriptions adjusted wont hurt.

Good luck to you

 

[Keif' Richards]

Hey there Steve! I'm really sorry to hear that you have to deal with all of this bullshit. I can say that it definitely makes my problems seem pretty insignificant. There are some things that I feel you could try. First, are you satisfied with the Oxycodone/Fentanyl and how they're treating your pain? There are many different Opioids out there with different effect profiles that might ultimately improve your comfort.

Also, you may already be aware, but Alprazolam (Xanax) is a relatively short-acting medication. There are some Benzodiazepines that might be more appropriate simply due to the fact that they last longer. You're waking up 4 hours after getting to sleep, which to me, seems like a clear indication that a longer-acting Benzodiazepine might work. The first choice that comes to mind would be Clonazepam (Klonopin). It will take a little longer to kick in, but will also last longer. At any rate, it might be something worth discussing with your prescriber.

There are also the so-called "Z-Drugs" which I think some prescribers might suggest, but I feel that these might not be appropriate for your situation, because the majority of them are most effective at inducing sleep, not maintaining it.

I know you've had a poor experience with Cannabis in the past, I just feel and granted, I'm biased, that it's worth a full and thourough investigation. There are myriad chemicals at play in any given preparation of Cannabis. This means you have a ton of selection, but it also means that you might have to go through quite a few trials before you find the one that works perfectly for you.

I'm epileptic and have my medical card here in Vermont. I tried several strains, oils, edibles and everything else, but finally found the stuff that worked best for me. Once I did, my quality of life improved so much that it was incredible. I had to do some digging though.

 

[Ripper3455]

Sorry it took so long to respond. I actually couldn't find the site. My Cancer is spreading and my pain has gone through the roof. I was getting sick to my stomach with the Fentanyl Patch so I quit that. I take the Oxycodone every 3 hours 15mg. Any more than that and the same result I get sick and nauseous. I have been sleeping better since stopping the patches. My problem is nausea. I have Tumors behind my Ear that are causing extreme pain. If I take more oxy I get nauseous. I can tolerate more if I lay still and stay on the couch but that's it. I am scheduled for a CAT Scan on Monday. That means they are going to cut me up again. I cannot get MRI's as my body is still full of Shrapnel from Vietnam. My Doc will give me anything I want all I need to do is ask. Is Morphine better than Oxycodone? Is it less likely to make me nauseous. To tell you the truth the my pain has nothing to do with me but everything to do with my wife and family. When she sees me suffering it makes her cry. The pain I watch my family endure is worse than the actual pain I am feeling. I have been married for 35 years. It hurts me so much to hear her cry herself to sleep at night. I try to hide it but sometimes I cannot. I need something I can use so when I feel it getting bad I can knock it right out so she doesn't see it.

 

[jamesBrown]

Sorry it took so long to respond. I actually couldn't find the site. My Cancer is spreading and my pain has gone through the roof. I was getting sick to my stomach with the Fentanyl Patch so I quit that. I take the Oxycodone every 3 hours 15mg. Any more than that and the same result I get sick and nauseous. I have been sleeping better since stopping the patches. My problem is nausea. I have Tumors behind my Ear that are causing extreme pain. If I take more oxy I get nauseous. I can tolerate more if I lay still and stay on the couch but that's it. I am scheduled for a CAT Scan on Monday. That means they are going to cut me up again. I cannot get MRI's as my body is still full of Shrapnel from Vietnam. My Doc will give me anything I want all I need to do is ask. Is Morphine better than Oxycodone? Is it less likely to make me nauseous. To tell you the truth the my pain has nothing to do with me but everything to do with my wife and family. When she sees me suffering it makes her cry. The pain I watch my family endure is worse than the actual pain I am feeling. I have been married for 35 years. It hurts me so much to hear her cry herself to sleep at night. I try to hide it but sometimes I cannot. I need something I can use so when I feel it getting bad I can knock it right out so she doesn't see it.

It's too bad that the fentanyl patches made you too nauseous...they provide excellent relief for the kind of pain you are dealing with. Did the patches still make you sick even if you took a smaller size patch?...because you might have simply been taking too much, which is easy to do with fentanyl.

Either way....to answer your question, NO...morphine is not likely to cause less nauseating symptoms than oxycodone...or most other opioids for moderate/severe pain. Morphine has been slowly replaced for the most part by other opioids that cause less side effects and are often stronger( ex. Hydromorphone, Oxymorphone, Oxycodone, fentanyl, etc ).
If your cancer pain is getting worse I would say to talk to your doctor about it. He/she should change your medication accordingly. I don't understand why you aren't on a long lasting/extended release medication like Opana ER( extended release oxymorphone ) along with a short acting "breakthrough pain-killer" like IR oxycodone or hydromorphone. That is the typical setup for chronic moderate/severe pain...especially cancer pain.

Good luck!

*You can also ask your doctor for advice on what might help the nausea or a prescription for a med to help with the nausea like promethazine. Although I personally find marijuana products to work best. I actually make my own coconut -cannabis capsules since marijuana is still illegal in my state. *

 

[Ripper3455]

Yea the Fentanyl was my long lasting med and the oxy was for spikes. I slept for 3 hours tonight before being awoken by a stabbing pain. I got up and took an oxy then 1/2 hour latter another. The pain has subsided now. I think I am getting closer to the end. Cancer is spreading fast and I can see a noticeable difference in the size of the Tumors everyday. My last option when it can't be contained is Chemo. When the Doc called today he told my wife we have other options. I guess this is what he means. I'll be 67 next month. I have lived a good life and have done everything I have ever wanted to. Raised four great kids and have grandchildren. My wife will be well taken care of and she is eight years younger than me. She has plenty of time left to go on with her life. I have no regrets. Having my family have to watch me suffer like this is terrible. I spend some days never getting off the couch. I am not really living. I Hunt and Fish and spend most winters out in the woods. I can't hunt cause I won't handle a firearm while taking these medications. If I sound like I am feeling sorry for myself I don't mean to. I have been fighting this disease for a long time. I knew sooner or latter it would win. It always does. I hope some day they find a cure for this.

I just had a cup of coffee. Believe it or not it will help me sleep for a couple hours LOL. Thanks for hanging out with me tonight JB. It was nice of you to listen to my jibble. Your a good man.

Steve

 

[DixiChik]

Hello Steve (my husband's name=)

I'm late to the conversation. Welcome to BL, though I'm sorry for your suffering. THANK YOU for your service to our country! My older brother is your age. He was drafted for Vietnam, but was fortunate to remain stateside at Ft. Hood, TX.

I wept when I read your posts. I lost a very dear friend one week ago, after a 9 year battle with prostate cancer. He was 61. I've yet to process the loss, as he lived 5 states away. I am in de-Nile. That ole river left its banks when I read your 4:12 post. God, I wish I could reach through cyber space and give you a HUG. I SO admire your courage and grace under fire of this wicked disease!

I agree with JB on the potential med switch/rotation. You should not have to suffer like this. Zofran melts help my nausea. I can't tolerate pain meds due to GI problems (long story). MMJ could also help your nausea and lift your mood. Have you considered vaping? I think it could be an adjunct to your other meds. Perhaps you can discuss this with your doctor, if it's legal in your state. I think it should be legal everywhere, especially for those of us who suffer intolerable pain.

I was 54 when my dear friend convinced me to try his MMJ. It helped him to smooth out the rough terrain of his last round of Taxotere. He needed it for pain and insomnia, even more so when he opted out of further chemo. He was my brother, though we share no DNA. He looked after me when he himself was dying. He had just said to me the week before he died that they were heading to the dispensary...to get my list ready! He died a week ago tonight. I won't get any more packages or "Hey Kiddo" emails from my sweet and compassionate friend. My heart aches in the space where he belongs...always will.

I hope you've fallen back asleep by now. Nights are the darkest and loneliest times for me, when hurting and unable to sleep. Tonight has been one of those. I tried to lie down with my husband at 11:00, but could not shut down my brain. I quietly exit and come into the den, so that he can get some rest. He'll be up by 5:15 to ready for work.

Bless his heart as he's such a good man. He'll ask "Baby, are you hurting? Did you not sleep at all? What can I do to make you feel better?" My response is always the same..."Just love me through it". He has, for 36+ years now. We're all we've got. We're each others "ride or die".

I hope to get to type with you some more. I feel a connection, somehow. You seem special. I love that you thanked JB for "hanging out with you" tonight.

We all need somebody to type/listen sometime. I know I do. Many of the responses on your thread are from folks who know their stuff. I don't know much about pharmaceuticals, though my PM doc has tried MANY from Fentanyl to Oxycodone and all points in between. I don't have cancer, but my stage 4 disease mutates like cancer. I've had 3+ surgeries and chemotherapy, which ravaged my bone health.

I know very little about MMJ, but was willing to learn (still am). It's just too many hoops to jump through (when it's 5 states away) and my angel of mercy has finally earned his wings.

 

[Ripper3455]

Hi Dixi. Your Husband sounds a lot like my wife. So sorry to hear of your friend. I know it sounds like an echo but at least he is not suffering anymore.

The Doc gave me some Gabapentin. It is for nerve pain. I had most of the nerves on the right side of my face removed. The one or two they left were partially taken. I can feel pins and needle pain on some areas so this is why he gave me that. Also I wanted to get off the Oxy. I take one at night around 8pm along with my Oxy and two 0.25 Xanax. I take a shot of Nyquil also. I have slept well the last 3 nights. The only thing I have done different was doubling the Xanax. The Doc called Thursday with results from my biopsies and it is Cancer. He said it is a different and more aggressive Cancer. I am having a CAT Scan done Monday, Tuesday I see Pain Management, and Wed. go to Philly to see my Surgeons. He said we have some other options he wants to talk about. I am getting this CAT Scan done with staff on hand as I am allergic to the contrast. I cannot have MRI Scans done because my body is full of Shrapnel and it is done with Big Magnets. They are afraid of pulling a piece of steel into an area that could hurt me like an Artery.
So it looks like I will be having another Surgery. The problem is I am running out of areas to replace with. They used my left Thigh and my right Thigh in the last two. They took Muscle, Veins, and Tissue. My right face is paralyzed. They cut me from my forehead in front of the Ear down to my Adams Apple. They removed the Nerves that control everything, my Saliva Glands, (hand me a cracker I chew it up and spit a handful of flour in your hand LOL) and my Lymph Nodes. They removed all the facial muscles and tissue and all of the inside of my Ear. Oh yea I'm deaf being the RPG took my left Ear. They had to replace all that and that is where they got it. The second Surgery they removed a lot of the back and side of my head. I still have some skull exposed but it is slowly closing up. In the second operation before they put me back together they laced the area with Radiation Pellets. This was to supposedly kill any Cancer that was missed. Well that didn't work but it does make healing take forever. I still have a hole and scabbing along the incision lines.

I doubled up on my Oxy today. Instead of 15 I took 30 when I hurt. I have had a good day and was outside a lot. I may try the patch again because if I run out of oxy they won't refill my prescription until a certain date. I just hope it doesn't make me sick again. Being in Pain and throwing up really sucks.

I had a visit today from a couple of fellas from our local VFW. Because my Cancer has been diagnosed as Service Connected I was given a spot on the New Jersey Vietnam Veterans Memorial wall in Holmdel NJ. I really don't know how I feel about it. They have an area just for guys who died as a result of being exposed or received conditions while in Vietnam. Some guys had Cancer and some Parkinson's. I don't know I will have to think about that.

Dixie thank you so much for sharing with me. I wish you could give me that hug I would hug you right back. There are good people in this world, they are just getting harder to find. The world has spun up way too fast for me. I grew up in the 50's and life was so simple back then. It is good to know there are still people out there that would take some time to try to make a stranger feel good.

Steve

 

[DixiChik]

Hello again Steve...I'm sorry to hear that the cancer remains so aggressive and you face more painful surgeries. Consider yourself (((BEAR HUGGED))) as you feel the care and concern coming at you through cyberspace. Damn, your procedures sound wicked painful and long on recovery. I cannot imagine.

I can relate to the nerve pain in your face, though certainly not approaching your level. In 2014 I found out the hard way that SHINGLES in my eye and face impaired my nerves forever (cranial and ocular). I called the virus the "cherry on top of my shit sundae of pain".

Sorry for my language...I can get quite colorful. I have a macabre sense of humor that sustains me. I don't mean to be offensive. I think I made the mistake of asking God "What else can happen?" He showed me. The virus antibodies remained at acute levels for over a year before I was allowed to get the injection. I'm rambling...sorry!

I hope you will decide in favor of taking your earned "spot" on the memorial wall. You belong there amongst your brothers in arms, no doubt.

You have a busy next week with your tests and appointments. I pray that the scans won't show that cancer has advanced as much as you fear! It sounds like you have a competent medical team working with you. If so, that means the world. I dread for you the additional surgery, but hopefully you can avoid chemo. I'm not convinced it prolongs life or living, but instead intense chemical induced torture. That will be a choice for only you to make.

I've been in so much pain today, I paused with a razor knife in my hand thinking...Hm-m-m, can I cut this fucking pain out of my side? Of course I thought better of it and opened my Amazon package instead.

There are lots of good people on BL. You'll know 'em when you read their words to you. I don't fit into this fast-paced world either, where people are self-absorbed. I care more for my fellow man than for myself. I try to be the change. I make eye contact, speak, smile and say I'm fine (façade) That small action can make a difference in someone's day. I love to talk/type, share experiences with those who are going through rough times...who know the depth and breadth of smiling in the midst of such FEAR. You one of those. I look forward to chatting with you again.

Please update us after your tests/consults next week. The Gabapentin saved my life, literally when I contracted SHINGLES. I hope it helps you, as it does ease nerve pain. Have you tried the MMJ suggested? I would love to have the freedom to test enough MMJ to find out which one (if any) would help me. I've tried several different strains over the past 6 months, but haven't found one that I can actually function while vaping. I thinks I need "some" THC for depression, but MORE CBD for inflammation and pain.

Take care and type here whenever you feel like it! We care!

 

[Ripper3455]

My Wife had the dreaded Shingles Dixie. Right rear shoulder. It was years ago and I cannot remember what meds they gave her. I do remember putting a Salve on it for her every night. She was in terrible pain all I could do was wait on her. It cleared up in about 3 weeks but she still feels it at times. May just be psychological but she will say "Look at my back, are my Shingles coming back". Nothing there though. I am on a new med today. LOL. Dexamethasone 6mg tablets. I took 6 this morning then I take 6 more at 11pm tonight then 6 more one hour before my appointment tomorrow. I am having a CAT Scan dome with contrast. I am allergic to the contrast. Last time I had it my Tongue swelled and my face turned purple. It got hard to breath. This will supposedly help with that. I will also have a med team at the ready. They need to have the contrast to get a better look at the Cancer.

I have absolutely no fear of death. I never did my entire life. I have never been a religious fella. My wife was the daughter of a Baptist Minister. Yes I married the Preachers Daughter LOL. We married in her faith. She attends Church every Sunday and participates in different things the Church does. Me no. The only time I go to Church is for family funerals. If there is a God according to the ten commandments I am going to Hell. Thou shalt not kill comes to mind. I killed and did so up close and personal in Vietnam. And as only another Combat Veteran could understand enjoyed it. So to believe in God would be condemning myself to Hell. Well that aint happening. I have been a good man my entire life. I have never cheated anyone and have been faithful to my wife. I worked hard and raised four beautiful children and now have grandchildren. I served my country and obeyed it's laws. I don't even have a traffic ticket on my record LOL. For all the good I have done my reward is this? LOL God would need to show himself for me to believe. I will fight to the end. They can cut me up. Radiate me, Chemo, or whatever else it takes to fight. But we all know there is no cure. Eventually Cancer will win. What is not fair is the suffering my wife and family have to endure. Sometimes I wish it was all over as I have said. They can heal and go on with their lives. My wife is 8 years younger than me and still a very beautiful women. She will have no problem finding someone to love her as I do. But they want me to fight and fight I will. To the last ounce of strength I have. No I have no fear of death. It was a good life and wherever I end up I will come flying in sideways yelling "Whoa what a ride". LOL

Your friend

Steve