Do any of you take slow release morphine capsules?
I’ve been prescribed these but just feel reluctant to take them as I hate side effects although I take codeine (cocodamol) and occasionally ocycodone for worse pain
Just wondering if the slow release ones will be more effective...I want to continue with an active lifestyle as long as possible and at the moment I’m struggling so much I’m suffering from depression over it and crying all the time
I try to be tough but it’s not working
Barb xx
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I take oxcycodone Just to get through the day . I know how miserable pain can leave you and I don’t want to suffer anymore than is necessary. Hope you feel some relief soon♥️
When you were prescribed the slow release morphine what did your oncologist say about the side effects? Are they quite severe? I would imagine your oncologist has decided that the benefits outweigh the risk of side effects. You need to have a handle on your pain, and not be suffering. That is no way to live. Can you call your oncology nurses or oncologist and ask about the side effects and then make a decision?
I know what they are from the info leaflet...tiredness is one of the main ones and I’m tired already so I’ll probably not be able to function but less pain...don’t know what to do with myself
Oh, Barb. It must be hard to know what to do for the best. If it came down to it, I think I would opt for the tiredness if it meant a reduction or elimination of the pain. But I still think you should talk things over with your oncologist and see what she says.
Thanks Sophie you’re always so kind...think I’ll just give the morphine a go as I’m sure that’s what my oncologist will suggest anyway
I’m seeing her on 22nd for a face to face consultation so will mention then and I’ll have at least tried the morphine and can report in case the dose needs adjusting
You're welcome, Barb. I think it's worth giving the morphine a try to see if it helps. Hopefully the benefits will be worth it for you. I hope your next consultation goes well with your oncologist. My last one in June was via Visionable (videoconferencing like Skype or Zoom) and my next consultation in November will be the same. Let us know you get on with the morphine.
It takes time to build up in your system. When I switched to slow release I also took the quick acting to get it under control. I find the slow release will maintain control of your pain. If that makes sense. If you have quick release meds then take one now and if your pain goes away then the slow release should then keep it at bay.
It may also take some time to figure the dosage. My doctor added up all the slow release I took everyday,then divided that total in half. That was the dosage she gave me to take twice a day. You have to be taking enough. I take hydromorphone which is a different dosage than morphine. I tried morphine but it made me nauseous where hydromorphone doesn’t. I’m not sure what it is called in England. It’s brand name is Dilaudid here in Canada.
I saw a few people take Fentanyl but that is the last opiate prescribed here as it is super strong.
If you have any other questions message me directly or email me. ❤️ Sarah.
That’s put my mind at rest...the fact that the slow release don’t always work immediately...I’m hoping that I’ll be able to manage on a moderate dose as I prefer not to be overmedicated
Isn’t it such a change from the things we used to worry about. Now it is pain levels, constipation, chemo and scan anxiety. Sure wish I could have that old life back. I would live it to the fullest and go places and do things I put off
Hi Barb, I hate to read about your pain. I honestly think if you tried Taxol chemo your pain would go. You are always in pain and that is just not right. Taxol so changed my life and when I am allowed to go back on it in November I will be so pleased. My spine is so good now and was a mess on Ibrance etc. I know you are so against chemo but I wish you would gIve it a try. I am not doing great on Xeloda but others find it fine. I think there is something for everyone out there. Much love Ruth x
I am on a fentanyl patch - lowest dose (12mcg/hr). I love it. I was taking hydrocodone pills and hated the up and down of it. The patch is a slow release and I don’t even notice it, except no pain. I would try the slow release. You can always go back. I’m so sorry you are struggling right now.
I would also recommend Fentanyl. The transdermal patch is slow release snd no side effects except for maybe constipation which they all do. After getting used to it, I don’t know that I’m in it except for no more back pain. I’m on the 2nd to lowest dose.
Hope that helps. Now I’m able to do gentle yoga specially designed for cancer 1x per week. That helps to, the more you move can heal you.
I’ll definitely consider fentanyl if I get no relief with the morphine...Sandra said they’re very much stronger than morphine so it’s another option...glad the patch works for you....pain is so debilitating and when I occasionally get a good day I’m a different person and I realise how horrible some days are in comparison
I take morphine sul 15mg er 2 times per day and I have since the very beginning. At one time I was adding on another pain reliever for breakthrough pain but I found it not necessary. I've been told this is very low dose and cannot get anything lower. It is much easier to take this twice per day and keep the pain managed than let it get away from me. I honestly think most of my pain comes from arthritis but regardless the source this helps me get through the days without thinking about it.
I have bone met to my neck, when I was diagnosed on Dec of 2018, I was in too much pain and nothing was working. My Onc put me on morphine extended release and that reduced my pain a lot. The only side affect for me was constipation which considering the horrible pain I had it was manageable. I had it for couple of months.
Hi Barb, I also struggle with constant pain. I’ve never tried the morphine capsules, but my onc put me on a fentanyl patch (25 mcg). It seems to help some, but I also take Percocet for the breakthrough pain. I have a CT scan coming up next Friday and I have been worried because I have been having more back and hip pain than before. I have mets to my bones and liver. I always get scanxiety, but this just feels different. I was diagnosed with MBC in January 2018, but also had breast cancer in 2000 and 2011. I don’t write much on here, but I read it everyday and I always appreciate your posts so much. I like that we can be honest and discuss how we’re feeling and everyone understands. It’s been beyond helpful when you have those days of crying and you don’t want to get out of bed and figure “what’s the point?” If you decide to try the morphine capsules, I hope they help and start working very quickly for you. Wishing you the best. Sincerely, Linda
That helps Linda...I felt wary of taking such a strong opioid but as I’m taking a lot of codeine it’s not as if I’m not used to them...I can always add oxycodone if they’re not strong enough
I tried butrans patches but I hated those...didn’t work very well and I felt nauseous on them
I’m sure if I could get on top of the pain my depression would improve as I could enjoy the outdoors more and exercise which always lifts my mood
I was diagnosed with mbc in 2018 as well having had stage 1 breast cancer in 1994...horrendous shock as you know
I hope your scan results are what you hope for...I can hardly deal with scanxiety...it’s like reliving the nightmare every time so I know exactly how you feel
I was also nervous to try the fentanyl patch because of the fentanyl horror stories that you hear, but I feel exactly like you do about getting on top of your pain to help with depression and having a better quality of life. I hope you can find something soon or a combination of something that will work well for you.
Hello Barb! I can’t offer you any advice on the morphine patches but if I was in your position I would give them a try , starting on a low dose . Also I agree that enjoying the outdoors and getting exercise lifts our moods and quality of life ! ...We were at Chatsworth yesterday in the rain ...but were just so glad to be out , we made the most of it between the showers...and a picnic under a big tree overlooking the main house , where we were joined by the scavenging ducks ! Can’t wait for the sun next week and to get back out on my bike ! Take care ! x
Oh what a shame it rained and it was cold as well...poor you...you’ll have to revisit when restrictions are lifted...I’m going to try the morphine slow release pills and have taken one tonight...they’re the lowest dose so hopefully they’ll help without me feeling peculiar
Yes Sandra I’ve googled fentanyl and it does seem a bit potent...I think maybe my last resort
I’ve just taken a morphine pill so will see how I feel tomorrow as I’m planning a ride but won’t if I feel peculiar...I gather the body will get used to side effects
Thank you as always for your knowledge...I’ve never really prescribed anything more than cocodamol occasionally for toothache so I don’t know a lot about morphine effects but doesn’t the body convert codeine into morphine?.. I’m assuming that my body won’t react too strongly to morphine instead as I’m used to codeine?
Anyway I’ll give it a go
Barb xx
Barb,
I'm so sorry for what you're dealing with and I hope you find some relief...
That’s good info thank you Sandra...these slow release capsules are 10 mg and last for 12 hours so not a massive amount...I suspect they may not be strong enough but time will tell
If I’m resting or in bed I have very little pain but as soon as I start to be active the pain starts...I suppose it could be worse ..at least I can sleep
That's horrible, pain is so debilitating. Fortunately the paracetamol and codeine and occasional tramadol, sorted me and now treatment has kicked in things have improved. When my husband had prostate cancer they gave him oromorph, then slow release fentonyl patches which worked.
Yes I've watched someone else go downhill so I'm sort of prepared for the process myself. Under no illusions!
But the nurse said yesterday to get on and enjoy life at the moment, so I'm going to try within covid restrictions.
Best wishes for pain relief. Bugsy and I both want you to be pain free. You need to be able to ride pain free. Covid-19 is probably getting us all down a bit too. Lots of hugs. Blessings Hannah
Some days I feel very stiff and achy and have to force myself to get moving.
However, something I find very helpful is my 30 Minute hot tub spa session every morning. I lose myself during this time and try and practice mindfulness.
I purchased this Blue Whale spa from Cost Co on my MBC diagnosis.
I’m the only one is uses it and it’s the best purchase I’ve ever made ... it’s a bit costly on the electric to heat it all round but I don’t care ... 😂. Go treat yourself if you’ve got room in your beautiful garden.
I’m not keen on hot tubs but love saunas and used to have those at the health club but now due to Covid it’s not possible...I have an infrared sauna at home but it’s not comfortable to sit in and the novelty has worn off!!
Love the names...I almost suggested bonnie and Clyde to you...bit daft though if they’re both same sex!!
Let’s hope this trial goes ahead now you’ve geared yourself up for it
I do have an infrared red heat pad (and a sauna thing which I don’t use) and I use it quite a lot if I’m watching TV
I would love to meet up with you...I know Sophie mentioned a get together at some point as well...Shame we’re not nearer one another...I don’t mind driving or even getting a train
Let’s ponder on that when you’re settled with your treatment
I think it would be great to meet you, Barb and anyone else who is available. I just responded to Barb and mentioned August as a possibility. Where would be a good place to meet? I'm in Suffolk, but could meet you in Norfolk, Cambridgeshire or maybe the Midlands. It just depends on what is easier on everyone else. I can drive for a couple of hours to a meet-up spot.
Whilst I’m keen to meet up with you ladies, my husband doesn’t want to, sorry... if you want to meet with husbands that’s fine, go ahead and us ladies can meet another time.
I think let’s meet up as girlies only initially - we can then possibly involve hubbies at a later stage ...
Jo xx
I have been taking hydromorphone cont which is a slow release. It is a godsend as I take it twice a day and my pain is always kept at bay. I don’t have to experience pain to then take it like the quick acting meds. Twice a day and no pain. It may take a little trial and error to get the right strength but once you figure that out it’s great. I have a bottle of low dose hydromorphone to use as break through Spain relief if I overdo it and the pain flares.
I’m so pleased you’re getting relief with the slow release morphine...I started last night and took one again this morning...I read it takes a few days for relief to be noticeable so I’m keeping my fingers crossed it works
Thank you for your reply...knowing it’s not just me struggling helps
I’m here anytime. It does take a couple days to build up in your system. If you have break throughs take one at bedtime and that might get it under control so the slow release can then take control. That way if you get tired you will be in bed anyways.
Hi Barb, my Dad had slow release morphine for a different illness. He was 90 and coped really well with it.
I’m so sorry your pain is worse. You are always such a bright spark.
I feel more like a damp squib than a bright spark at the moment...having a telephone consultation with my GP tomorrow for advice on pain medication...I can’t live like this
Yes I spoke to my GP today...she’s advised me to take the slow morphine and use cocodamol for breakthrough pain not oxycodone as they’re different in their mode of action...I’m to do a diary for a week of extra meds and my pain score then she can calculate a dose of slow morphine...the current one is the lowest
Just talking about it and her being interested and having a plan has made me feel much better
Hope you will find the right combination of drugs that keep your pain at bay. My pain is still just a dull ache in my middle back and can still control with extra strength Tylenol. I took hydomorphine before I had my radiation a year ago.
Got the results from my scans and all is good. No changes. I keep hoping for some shrinkage but it is not happening so far. Good for another 3 months..
I have only taken Vicodin. I’m such a light weight I’m not sure I could handle the others. I’m sorry Barb that you are in that much pain. What is causing the pain.? I hope for some relief for you.
I fractured a vertebra two years ago which is how mbc was discovered...I’ve extensive bone mets...the pain is getting worse and in more locations...I’m not sure if my new treatment has anything to do with it...I’m now on faslodex injections...may be a coincidence but the pain has escalated since I started it
I took morphine slow release last night and this morning but I’ve had to take other painkillers in between today...maybe it takes a few days to level out but I suspect the dose of 10 mg isn’t going to be strong enough
Hello Barb - I too have been using the fentanyl patch for over 2 years. Has been life changing for me and well managed by monthly visits with my pain management physician. I was unable to walk due to bone mets in my hips. Following radiation and several trials with other pain meds, the patch was a life saver. Certainly worth a try if your present rx fails. Wishing you all the best. Pain can be managed!
I’m speaking to my GP tomorrow so I’ll ask about the fentanyl patches...something has to be done...I can’t suffer like this...I’m not eating properly due to the pain and I’m no fun to have around
I’m usually very tough and not a whinger but this is too much
I'm on the slow releasing morphine and makes slight difference with pain quite safe to take them
Sorry you are going through such a tough time with pain.
I just wanted to let you know R.P. that many of my frail elderly patients have the slow release tablets when they come out of hospital following surgery. The majority of them cope with it well. The occasional person gets sleepy and loses appetite on them, but these are people on their 80s and 90s who aren’t as fit as you.
That’s reassured me as I don’t want to feel like I’m ‘spaced out’ or drowsy all the time... I need to have my wits about me especially driving and riding
So sorry for your pain Barb. Sounds awful. Glad to hear you are seeing your G.P. Hope he has some answers for you. As you might remember, I take an Oxycodone in the morning and a Lyrica at night. I just take one of each but could have two if I needed it. The Oxycodone is just great for me. I do have sleepy days but then have days were I can do almost everything I want. Not riding horses mind you, (well maybe) or running but I feel well. So important for the spirit. I know you take Oxycodone sometimes is there some reason you don't take it on a regular basis? Does it help when you take it? I guess not or you would be taking it every day. Glad you have had so much great advice here. I sure hope you are better soon.
I mess about with different pills and doses and try to keep on top of the pain with the least medication which is stupid if me but I don’t want to be ‘out of it’ on painkillers medication but it’s now getting to the point that I don’t want to do anything because I know the pain will come on and it’s so awful
I have a notion that taking morphine or similar is the end of the road and feels like I’m ‘giving in’ to the cancer....I’ve now gathered from your replies that many of you ladies are taking these drugs and living normally and doing activities
Thank you Sandra...I’ve only taken some cocodamol once today for pain but when I ride tomorrow I’ll take some beforehand just so I’ll be comfortable...just trial and error for a while until doc gets the morphine dosage right
She seems to think she can get me fairly pain free...wouldn’t that be wonderful??
Sweet of you to say that Sandra...maybe you ought to have a stronger medication?
I thought I would be a bit ‘away with the fairies’ on this morphine but so far I’m alert...in fact waking up earlier than usual...did all my codewords crosswords sudoku etc as normal yesterday so my brain still functioning!!perhaps the codeine I was taking was having a worse effect?
I may have to increase the morphine dose though so that will be a difficult one
I’m going to need stronger morphine...rode Bugsy for about 20 mins yesterday and the pain was ridiculous...I’m wondering if I have another fracture or something...took extra meds but couldn’t get on top of the pain at all
Time to hang up my spurs
Have planned rides out with vanessa next week and a chum the week after but I’ll have to cancel...it’s just no fun any more
My mum is in such a similar position as you, she has bone mets to spine (which are pressing on nerves causing so much pain) she had a good year on ibrance and letrozole with no progression but earlier this year they found a tumor in her brain and spine tumors had grown, treatment for brain was high dose radiotherapy, and change from ibrance/letrozole to tamoxifen (I’m guessing due to covid) now new scans show more progression in spine tumor so has changed treatment again (as of today) to Faslodex and Denosumab! I’m curious as you seem to have been through similar how you get on at your next scan? Although my mum does seem a bit worse than you she is now unable to stand or use her right arm so she has only her left arm left functioning! She is in extreme pain and feeling so down lately she is crying all the time as she finds it hard to not be able to do things she used to! She was always looking after everyone now can’t so think it’s getting to her she has always been so strong and positive! Her pain was not controlled with oramorph or slow release morphine she was advised to visit woodlands hospice near us and the pain team there were great she stayed there for a week and they tested different pain meds the ones worked for her were Oxycodone and Longtec slow release (which is Oxycodone too I think?) also ketamine! She also was hesitant to take anything that would make her away with the fairies but in the end the pain got too much! At first she was a bit out of it and was hallucinating a little (nothing bad more funny things) but as time has gone by she has been well more alert and is back to normal (by the way she didn’t know she was like that only we told her) but it took the pain away she isn’t really tired either unless she had a bad night! She has more bad days than good but think that is due to the tumors growing and pressing on more nerves in her spine!
Just needed to write this and get it out as we have just been today for the first time face to face with the oncologist and after reading your posts it sounds very similar to my mums situation, all I can advise is to take the pain killers and see how you go if they don’t work try something else and would highly recommend hospice pain specialists for the pain as my mums oncologist didn’t really know much about pain meds! Don’t let the pain get too bad as my mum did of fear of how she would feel from the side effects but being pain free are the days we get a bit of my mum back!
Hope your next scans are promising I’m hoping this new treatment is the one for my mum too!
Thank you for your frank reply...I really understand how your mum is feeling and it’s so awful...
I saw my oncologist today and she’s going to write to my GP about prescribing Longtec as I’ve had Shortec before and it does help with breakthrough pain...as you said I need to find out what works without being too weird with side effects...I find the morphine not helpful at a low dose...have just got some oramorph for breakthrough pain and so far it’s not done much...I’m also taking paracetamol and ibuprofen ...I would be so happy if my pain was reduced as life is joyless and I burst into tears at the slightest thing
Give your mum my kind regards...I’m so pleased she’s had some relief
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