Pain From Diagnosed Cancer, Not From Treatment
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Wildplaces, would you elaborate on your idea of sleep pattern? I have insomnia which compounds the pain I agree. Pain is so individual. I know my body very well, and even though my MO is quite accommodating and honors my QOL, he is not a palliative care nor pain management doctor. He treats me as a partner in my care and listens to my concerns, etc. but the nearest pain center for me is 2 hours away. I struggle with what pain meds are commonly used and what is useful for me. I recently tried 25 mcg of Fentanyl and nearly ended up in the ER with heart issues and respiratory depression. I started Xeloda a few weeks ago and have bad constipation, so I've backed off of all my pain meds in an effort to help with that. Now of course, I'm way behind the pain curve. It sure can be trial and error.
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Hello Lindalou,
I have no simple answer and I am not sure my this is "what is available list" will be of much help.
Please note that in NO WAY I am suggesting you need one or any of these drugs!!
It is just some of what is available drug wise in the treatment of sleep disorders and pain.
My very best advice would be to try and find someone medical you can see that has an interest in this - maybe consult on Skype if distance is a problem - I know.....This is particularly important as you described that reaction to fentanyl.
Sleep is hard to get into - assuming you have dealt with all "mechanical issues" - that would be where I lump - regular pattern, routine, not a heavy meal before bed, quiet room, etc
the classes of drugs that you could ask your MO/doctor about depend a bit on the cause or causes for your insomnia:
- drugs used for pain relief
- drugs used for muscle relaxation Magnesium, calcium supp, some benzodiazepines - Diazepam being the classic
- drugs used for anti-anxiety
- drugs used for sedation - these are often known as sleeping tablets and start with the bezodiapines - Temazepam being the most known here, but are others - I take a half of Imovane ( zopiclone ) 3.5mg about three- five nights a week.
- drugs used for depression
- marihuana, valerian and melatonin
I will not go into specifics of the above given this thread theme.
Suffice to say that they have different onset of action and can interact with each other - so when you take them and with what you take them is as important as for what you take them.
Some of them have multiple effects - for example a drug that causes sedation may have some muscle relaxation and anti-anxiolytics properties. Or a drug that is primary an anti depressive may have some anti-anxiety and sedative effects. They all have side effects
Drugs used for pain
- paracetamol
- anti-inflammatories
- tramadol
- opioids - natural and synthetic ( morphine being a natural and fentanyl being synthetic) - in here you have oxycodone - semisynthetic - which is oxynorm -
If you are back to oxynorm - would you have something as Targin ( which is long acting oxycodone with naloxone which is believed to be a opioid receptor antagonist ( opposing action) blunting some of the side effects of the OxyContin) - you take a twice daily dose ( it does not reduce the total dose of opioid you need per se but may iron out the hills and valleys of four hourly dosing)
- ketamine (NMDA antagonist)
- Tapentadol ( Palexia)
- clonidine - drops blood pressure, and may cause sedation depending on dose but totally non opioid so nice in some situations, often used peri-operatively
- gabapentin, pregabalin and carbamazepine - really complex multiple mechanisms of action that explain why they seem to fine in some and really bum out in others - thought to aid in neuropathic pain
- anti-depressant - oldies but still some role - amitryptilline and duloxetine
It takes time, patience and a savy clinician to tweak well the soup that chronic pain is...😊
So keep pushing 😊🌷all behind you.
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DX'd Stage IV de novo in September (liver and bone mets), they thought I had maybe two months to live. My cancer was extremely aggressive, kept growing daily and causing more problems even as I was in hospital. I had pain from an ulcerated wound on my breast, and then the tumor moved into the brachial nerves of my right arm. They cautioned me that I might never regain use of my arm if we couldn't limit the nerve damage. I was often at level 9-10 pain. Initial treatment was entirely focused on pain management so I could have better quality of life for my remaining days. Chemo (taxol) was part of that, in hopes that it would help me regain some mobility in my right arm. It took weeks to figure out the right meds to keep the pain manageable.
My doctor never expected me to have such a dramatic response to chemo, and I made drastic improvements week after week (including regaining use of my right arm). I'm actually doing quite well (as well as someone can at Stage IV) and easing my way back into my new normal life. I've been able to reduce the amount of pain meds I've been taking. Going on the patch was the best move I made because the morphine IR was too much of a roller coaster. The patch let me cut my morphine usage in half.
Currently on Fentanyl 25 mcg.hr patch every 72 hours, morphine sulfate IR 15 mg every 8 hours (down from every 3-4 hours)), gabapentin 300 mg for nerve pain 2x day (down from 3X day. I might try to reduce further or eliminate now that the nerve pain in my arm seems to be under control). Also take paxil (anti-depressant) before bed, and it seems to have helped normalize my sleep cycle. I was given a prescription for Oxy but never took it. Also have 2mg Dilaudid for breakthrough pain but haven't used it since I went on the patch.
I'm new to the game since I was just DX'ed two months ago. I forgot to change my patch for three days last week (if I don't set an alarm in my phone, I forget everything these days), and I woke up with a backache those three days. The mets in my spine absolutely terrify me, and now I don't know if the back pain was just the normal feeling old and achy backache, or if it's from the extensive mets in my spine. I didn't have any bone pain before I was diagnosed, other than the typical "growing older" aches. I know that I eventually will.
Had a really hard time finding a product that worked for the constipation. Most didn't work at all, even when combined with prune juice. Miralax worked "too" well. Senokot-S is the only one that works for me and keeps me on a normal daily schedule.
Another thing that helps me relax and sleep well is lavender essential oil. One of my nurses used to give me a warm cloth infused with lavender oil when I had a restless night in the hospital, and I made sure to get some essential oil as soon as I got home. I just put a drop or two on a tissue that I can hold to my nose (although I might look for some cheap wash cloths so I can make the warm cloths the nurse used, now that I'm actually able to get out of the house). Lavender does an amazing job at relaxing me when I get too stressed to sleep.
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Constipation
- pear juice can also be effective
- movichol - the chocolate flavour is better
- vivomixx is a super power probiotic - quite complex and rather expensive - (work in ulcerative colitis shows it to be effective) - it also works well to regulate bowel motions
😊🌷
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MariJen, I was not offended by your post. I can't speak for others, but I know you offered that link with best of intentions. Your posts are no less important than anyone else's. I am sorry if I made you feel otherwise. Please add the link again; If you don’t mind (don’t want to pressure you) I appreciate your helpfulness.stay with us! :-)
LoriCA— you got a quick initiation didn’t you? I’m glad chemo helped. I sometimes use my iPhone alarm for medication reminders. Some pharmacy apps also have them.
LoriCA, and anyone else, if Miralax works too well, just back off. I build up a tolerance to senna in 2-3 days and it stops working. I have to take 2 doses of Miralax daily. If I miss a day, I have to start the next day with double doses every 4 hours and even then it's uncomfortable. Gosh, the battles we face.
I'm really thankful to everyone for sharing info. Wildplaces, thanks for the long list. Sometimes it helps just to have names. I've taken clonidine to help with heebie-Jeebies when I'm switching from one pain med to another. I can't imagine taking Ketamine on a regular basis. I've heard it can give nightmares. I didn't even know what Ketamine infusions were until 3 months ago
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Who all takes a probiotic for constipation with all the pain meds we take? Amount? Brand? Miralax and Senna hardly work for me anymore.
Wildplaces, I will look into your suggestions.
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MariJen,
PLEASE post again if you get the time - both pregabalin and gabapentin were first used in epilepsy (partial seizures) they work on Calcium gated channels and Yes, they decrease the release of synaptic neuronal release of several neurotransmitters - decreasing neuronal excitability.
They are also used for neuropathic pain and recently approved in Europe as an anti anxiety medication, I am not convinced on that one to be honest but will see.
It is just as important to get their side effects as their potential benefits uses. I think it's absolutely fair to say it was a bad drug for you. It may be also for many others. Apologies if I came across odd - as you guys might have guessed I work in this area and I have a bit of a bone to pick with some prescribers who follow trends - mea culpa - it was in that sense that I said there are no bad drugs. Some old drugs are priceless and have occ fallen out of favour, or been forgotten and some new ones are not all the big pharma would like us to believe. So again it's really important to post on side effects!!
Lindalou,
😊 Thank you - it's not just any probiotic it's Vivomixx, ha 🙄🙄🙄 I am sure you've heard that before - its packed full of s..t so to speak - and you don't have to take it daily, but as part of a bowel regimen, because at about $Aus130 (not sure of eq in US or Europe) for 30 sachet its bloody expensive. Having said that I do think gut microbiota - a fancy word for bugs living happily in your gut - it's a new area of immunology cancer research and there is solid work to suggest that supplementing during chemotherapy may improve the benefits of chemo.
Yes, Ketamine particularly at higher doses can cause dissociative effect - nightmares.
Here is a link to its many uses
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC42589...
You have to scroll through it to get to the chronic pain bit but the key to Ketamine appears to be in the dosing.
😊🌷🐣
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Hi, here is the link, and some more info.
Neurontin and Lyrica are a Death Sentence for New Brain Synapses
July 16, 2017 - By M G Rana, MD.
http://fibromyalgiaresources.com/neurontin-lyrica-...
From
https://www.drugs.com/pro/gabapentin.html professional tab
5.8 Tumorigenic Potential
In an oral carcinogenicity study, Gabapentin increased the incidence of pancreatic acinar cell tumors in rats [see NONCLINICAL TOXICOLOGY (13.1)]. The clinical significance of this finding is unknown. Clinical experience during Gabapentin's premarketing development provides no direct means to assess its potential for inducing tumors in humans.
In clinical studies in adjunctive therapy in epilepsy comprising 2085 patient-years of exposure in patients >12 years of age, new tumors were reported in 10 patients (2 breast, 3 brain, 2 lung, 1 adrenal, 1 non-Hodgkin's lymphoma, 1 endometrial carcinoma in situ), and preexisting tumors worsened in 11 patients (9 brain, 1 breast, 1 prostate) during or up to 2 years following discontinuation of Gabapentin. Without knowledge of the background incidence and recurrence in a similar population not treated with Gabapentin, it is impossible to know whether the incidence seen in this cohort is or is not affected by treatment.
MEDICATION GUIDE
Gabapentin (GA-be-PEN-tin) Capsules
Read the Medication Guide before you start taking Gabapentin capsules and each time you get a refill. There may be new information. This information does not take the place of talking to your healthcare provider about your medical condition or treatment.
What is the most important information I should know about Gabapentin capsules? Do not stop taking Gabapentin capsules without first talking to your healthcare provider.
Stopping Gabapentin capsules suddenly can cause serious problems.
Gabapentin capsules can cause serious side effects including:
1. Suicidal Thoughts. Like other antiepileptic drugs, Gabapentin capsules may cause suicidal thoughts or actions in a very small number of people, about 1 in 500.
Call a healthcare provider right away if you have any of these symptoms, especially if they are new, worse, or worry you:
- thoughts about suicide or dying
- attempts to commit suicide
- new or worse depression
- new or worse anxiety
- feeling agitated or restless
- panic attacks
- trouble sleeping (insomnia)
- new or worse irritability
- acting aggressive, being angry, or violent
- acting on dangerous impulses
- an extreme increase in activity and talking (mania)
- other unusual changes in behavior or mood
How can I watch for early symptoms of suicidal thoughts and actions?
- Pay attention to any changes, especially sudden changes, in mood, behaviors, thoughts, or feelings.
- Keep all follow-up visits with your healthcare provider as scheduled.
- *****************
More side effects
Some side effects of gabapentin may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:
More common- Blurred vision
- cold or flu-like symptoms
- delusions
- dementia
- hoarseness
- lack or loss of strength
- lower back or side pain
- swelling of the hands, feet, or lower legs
- trembling or shaking
- Accidental injury
- appetite increased
- back pain
- bloated or full feeling
- body aches or pain
- burning, dry, or itching eyes
- change in vision
- change in walking and balance
- clumsiness or unsteadiness
- congestion
- constipation
- cough producing mucus
- decrease in sexual desire or ability
- difficulty with breathing
- dryness of the mouth or throat
- earache
- excess air or gas in the stomach or intestines
- excessive tearing
- eye discharge
- feeling faint, dizzy, or lightheadedness
- feeling of warmth or heat
- flushed, dry skin
- flushing or redness of the skin, especially on the face and neck
- frequent urination
- fruit-like breath odor
- impaired vision
- incoordination
- increased hunger
- increased sensitivity to pain
- increased sensitivity to touch
- increased thirst
- indigestion
- noise in the ears
- pain, redness, rash, swelling, or bleeding where the skin is rubbed off
- passing gas
- redness or swelling in the ear
- redness, pain, swelling of the eye, eyelid, or inner lining of the eyelid
- runny nose
- sneezing
- sweating
- tender, swollen glands in the neck
- tightness in the chest
- tingling in the hands and feet
- trouble sleeping
- trouble swallowing
- trouble thinking
- twitching
- unexplained weight loss
- voice changes
- vomiting
- weakness or loss of strength
- weight gain
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I am sorry you had horrible side effects from gabapentin.
😊
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I am falling asleep trying to catch up here~~had to stop my Ibrance 3 days before the end of cycle 3 due to tanking neutrophils and WBC and am exhausted. But before I go to bed just two things from above. My neuropathy is caused by my tumour's tentacles grabbing the neuromuscular bundle of the brachial plexus. The medial and lateral nerves are involved and I have pain mainly in my forearm and worst in my hand~~middle, ring, and pinkie fingers plus the palm of my hand. Nerve pain causing burning tingling and numbness are my biggest issue. I also have moderate/severe lymphedema which was what was the start of this whole affair. So we are working on pain management plus Lyrica for the nerve damage. I am now taking 75 mg tid. I see above that some of you are taking far higher doses. I think it is the worst drug I have ever taken and blame it for making it difficult to get out of bed every day with no sign of change in nerve damage. I will take some time to carefully read all of your most interesting posts tomorrow.
Marian
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Marian,
Lyrica ( pregabalin ) can indeed cause sedation and dizziness.
It can be given in twice daily or three times daily doses.
The maximum doses range around 300mg bd ( twice daily)
Would it help if you giggled your dose timing a little - took 75 mg late mid morning and 150mg just before you went to bed. It's not like an antibiotic, I think it's half life allows that - worth asking your doctor? maybe....
😊🌷
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Wildplaces, funny that you should also think like that. When I went to drop the Rx for 50's (I had run out of them) the young pharmacist, my friend who is a nurse and me a decades ago nurse had a similar discussion and yes, I am messing around with it. Can't hurt and thanks for weighing in at just the right time. My son is living in Melbourne right now, Where are you?
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Marian,
I am an anaesthetist. I am exMelbourne, came up to the Gold Coast for rest and relaxation about four years ago. I found a river, lots of sea, three chooks, great people to work for and then stage 2 cancer found me - but I am grateful and humbled - all good for now.
I post a bit on a thread called Shadow in the chest is a recurrence - I mention this because one of the ladies who also posts there is Sadiesservant - also from Victoria BC, stage 4 and she rocks - absolutely. I have this crazy notion you would enjoy her company - perhaps because I do.
😊🌷
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Wildplaces, i had 9 chooks by the time we were getting ready to move to Victoria and in Vancouver we were only allowed 4. Broody hens and fertilized eggs made my flock multiply. I do miss them but it was a perfect 4 year hobby post Stage IIIA. I do want to meet Sadiesservant and I will work on that. My husband is a Kiwi (more of a Canadian for decades) and he is in NZ right now preparing our catamaran to sail from there to here leaving late March. Off topic but was discussing pain on Skype today with husband and SIL. Hard to describe really and for now am unwilling to test the waters by not taking my opioids. This sleeping disease as I am starting to call it is not a bad thing but I am so used to waking earlyish and getting moving.
Marian
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Wildplaces, I tried searching Shadow in the chest....but came up with nothing like that. Could you copy/paste please?
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Marian - my typo, try " Shadow in chest is recurrence" and Sadiesservant.
Or just click on my Wildplaces and my posts appear.
You can certainly start cutting back on opioids if you do it very slowly you'll know whether it's right for you.😊
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Hi there,
I am reading this thread on pain. I have been newly diagnosed with mets to the bone (less than 1 cm) at 2 spots around the ribs. I have been feeling slight pain for the last week. Then 3 days ago, I did some aerobics excercise. Now I feel pain all around the side of my right ribs and the back too. Wondering if the pain is caused by cancer or if i stretched a muscle. The pain is more noticeable when I move, cough or touch. I would assume if it’s bone cancer related, the pain would be more consistent?
I also have small lesions in the liver. Could this be liver pain?
Thank you!
There
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I am sorry you are dealing with the pain on top of everything else but no one here is really qualified to say whether the pain is from the liver lesions.
Having said that you could have pulled a muscle esp since you justdid aerobic exercises and then felt the pain.
I have no clue about pain from liver lesions and I wish you didn’t either.,
I would definitely go get it checked out.
Good luck.
Diane
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I had SEVERE pain in my lower right back, that hip and pelvic bone. An MRI confirmed that I have a deep muscular tumor in my back area and a tumor in my pelvic bone. I was taking up to 120 mg of oxycodone, 20 mg of hydrocodone and 1600 mg of ibuprofen every day, along with 150 mcg patch of fentanyl... all with NO relief. None. No exaggeration. I spent my days crying and laying in a heating pad, which seemed to bring me the only relief I got. It eventually got so bad that I couldn’t walk any distance without buckling in pain. When my oncologist saw me, he was appalled that I had been suffering like thatand sent me for radiation. (I’m stubborn and never call onc as I always think “I’ll see him in x amount of days”). Radiation savd me!!! I consider my rad onc a lifesaver.. no joke.
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thereishope, my pain began intermittently especially with a sneeze or cough. After a few months it came , stayed and got worse. Only a scan can see it.
Shelia, same here with radiologist. Could hug his neck
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Hopefully this is the right place to post this question.
I just took my first morphine pill for terrible pain from skin mets and breast tumors. About 7 months ago I got a tattoo, not my first one, and it has healed normally no problems. Tonight I took a 30mg morphine pill and the tattoo is raised around the curves in the tattoo and is crazy itchy. I do th itch anywhere else and don’t have any other noticeable symptoms. I’ve sent an email to my MO so she will see it tomorrow, but I was wondering if this has happened to anyone else. Took the pill about and hour before I noticed the itching and raised area. The itching seems to be subsiding. Just seems like such a weird reaction.0 -
Parrynd1, opiates release histamines, so it’s not unusual for people taking pain medicine to have itching, skin rashes. (FWIW, I’ve been told pain pumps, the implanted kind, can be worse, which is one reason I won’t get one.) Your tattoo area is probably the rawest area on your body. The skin sensitivity can spread. Hydrocortisone cream can help, until you can speak with a doctor. Benadryl cream can help, but it often burns my skin.
Singulair (montelukast) taken daily has helped my skin. I had red, raw peeling skin from daily opiates/cancer treatment. I just finished 10 days of doxycycline, which caused extreme skin sensitivity.
Those of us who take cancer treatment that interferes with cell production often have skin issues, even without pain meds.
I hope you can get relief soon. A dermatologist can help, in addition to oncologists/pain specialists.
I also hope the morphine helps. It has helped me in the past with my daily cancer pain.
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It was months and months of unrelenting 'discomfort' in my left breast that finally prompted me to go get a mammogram, just to make sure everything was alright.
I poked and felt and looked at my breast to see where this vague, nagging pain could be coming from. I never found a lump or any place that felt painful to the touch. But all day and in bed at night it was getting troublesome to get to sleep cause my damn boob was hurting. I thought it might be menopause, yet my periods were going full steam ahead with no sign of stopping or even slowing down. That made the menopause hypothesis rather shaky.
Mamm showed architectural distortion. Surgical biopsy showed cancer. My cancer HURT. It had been 9 years since my last mammogram so there is no knowing how long that cancer was in there growing to the point of hurting. But it did hurt.
Later, when I was telling my oncologist that pain alerted me to the problem he calmly assured me that I was mistaken, that breast cancer is not painful. He is wrong. Dead wrong.
I had always heard that breast cancer is painless and that allowed me a false sense of security. It made me ignore this pain far longer than I would have had I been told that breast cancer CAN hurt and unrelenting misery in your breast is a good reason to go have things checked out. But breast cancer doesn't hurt, so I ignored it, until I couldn't anymore.
To answer the original question my breast pain was a dull, throbbing ache that was constant 24/7 that I could find no major centre of pain, nothing made it feel better, it was steady and unchanging.
I pretty much have not had a day without pain since my surgery. Not the pain others here are experiencing with mets. But I have lymphedema in my breast, side, ribs, arm. This constant state of being swelled up, sometimes worse, sometimes better, hurts. But it is much different than the original, annoying ache. The idea that breast cancer doesn't hurt is wrong and misleading. Dangerously so in my opinion.
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My tumor hurt too. And I had an inflammatory response (pink spot on breast, fever) which is what caused me to notice the lump. Maybe it has something to do with where the tumor is, and whether it is pressing on a nerve.
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I do have loco-regional mets but it was the pain that led me to the mets diagnosis. I had my reconstruction removed thinking that was it. But two months later after much complaining, I got the diagnosis and now take methadone, have nerve blocks, and cannot use my right hand at all due to the tumour wrapped around the neurovascular bundle of my right brachial plexus. The pain started a long time before lymphedema too.
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Runor all my breast (actually in the breast) cancer has hurt. I was told by 2 different doctors that cancer doesn’t hurt and they would have just dismissed me if I hadn’t been so pushy. Those doctors were so sure of themselves too. My pain was similar...a ache in my breast that never went away and couldn’t exactly pinpoint. I also have LE but very mild...it’s not the same kind of pain but for me it’s discomfort to the point of pain almost. It’s hard to explain. I think extreme discomfort could be a torture technique. Just because it’s not stabbing pain doesn’t lessen how you are able to function and focus in your daily life. Massage helps me a lot when I get swollen. I hope you find something that helps.
Tarheel thanks for all the info and insight. Makes me feel less paranoid. The pharmacist was warning us about the morphine and saying I might stop breathing in my sleep and I need this other prescription inhaler they use for overdoses before I even take the Morphine. And the inhaler is just so the paramedics can get to me in time to intubate me. Well my insurance doesn’t cover this inhaler and it’s $150 so we didn’t get it. Of course something weird has to happen when we are already freaked out by taking the new pain med. I feel a lot better now so big thanks 😊 So far taking the lowest morphine dose plus the Roxicodone my pain is almost gone. I feel mostly normal just slow mentally a bit and some tiredness. There’s still some pain so figuring out the right cocktail is key. I want to live as normal a life I can while I can and the pain just stops everything.0 -
my cancer hurt too!
Tattoo issues= Benadryl cream right on the tattoo will help to decrease swelling and itching from the histamine skin chemicals. 2nd best oral Benadryl or vistaril.
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mariannelizabeth: so it says 7 nodes positive & stage 4.
Where were nodes from? Like level 2. 3.
Tumor wrapped in brachial plexus. so sorry.
1. I just experienced a progression of my Radiation Induced Brachial Plexopathy. Blessed for a bad left since I'm right handed.
2. I'm losing hand function but this medrol pack that I started Thursday is really helping! Less pain, can open & close hand 90% better.
3. I think being 12 years out from radiation the decrease is due to shrinking of tissues over time plus aging. I think my tissues are becoming fibrotic in the area then clamping nerve & artery.
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