I have various medications I can take from cocodamol and ibuprofen to ocycodone and long acting morphine
I try to take the milder stuff as I suffer with constipation and feel rubbish but recently I’m struggling with constant discomfort
A friend of mine was telling me how effective Fentalin patches were for her and they give relief for several days
Have any of you ladies experienced these ? as I’m wondering why nobody has prescribed these for me because any opiates upset my tummy but I’m getting to the stage where I can’t live my life
I’m feeling sorry for myself today
Barb xx
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I’m so sorry to hear you are in so much pain!! I don’t have that problem with Opiates. I love them too much, so much that I have an agreement with my doctor that my father who lives upstairs from me holds them and doses them to me as needed and I can’t go beyond a certain amount.
I have heard good things also about Fentanyl patches. They are Opiates though, so if you get sick from the pills, the patches might do the same. Talk to your doctor though, it’s definitely worth a try and it never hurts to ask. Anything is better than being in constant pain!!
Good luck with your appointment. A pain doc is the way to go or a palliative care doc! That's their job... To help with dealing with all the problems that arise from this damn cancer!
I agree...my oncologist is nice but just seems dismissive about pain and it’s the main symptom that spoils my life as I’m used to being so active
I’m going to start swimming in earnest...think that will be benefit me...though I hate the getting wet/getting dressed scenario!!... hope my extensions don’t fall out!!
I should take a leaf from your book wth the swimming Barb. I too hate the wet to dry scenario. Never heard anyone else mention this before... in general I mean. Such a pain in the!
I went yesterday morning for a swim...didn’t do much..a few lengths and had to stop now and then due to fatigue...I used to be so fit and now so rubbish...I wasn’t in pain in the water so it must be a good sign...there’s a sauna etc there so I can doss if I like!!
Woke up in a horrible mood so might swim again today...anything to distract me from this bastard mbc
Hello Lisa...how are you? Hi Ladies on the Post. This has been a rough last couple of months for me and honestly too much to type...I had to have a blood transfusion 2 days ago and still struggling with my energy level...The Ibrance wiped my CBC out and before i could bounce back Gemzar was wiping me out as well. My Oncologist kept on insisting that I started chemotherapy, i wished I would have followed my own advice and not start it yet...Pain beyond pain, started Morphine and that gave me some comfort.
Oh Felisha!! I am so sorry!!! I have been meaning to call you but I figured you might be trying something new and not wanting to answer the phone or type. I wish I lived closer, I would come by and bring you anything you needed or just keep you company. This treatment stuff sucks!!!!! Please know I’m thinking of you and when you feel up to it, call or text me and we can catch up. Take good care of yourself and please get all the rest you can. Sending you thoughts and prayers. ❤️❤️❤️🙏🏻🙏🏻🙏🏻
Aww thank you sweetheart and I hope the same for you. I just took some pain meds and I'm eating some pineapple chunks for absorbance, don't have much of an appetite. I'm going to take a nap and once I wake up I will text you to see if you're still up. My sleeping pattern is way off, but I'm sleepy now so i figure I'd take advantage of it..lol hugs and kisses to you...Talk to you soon..
All I’ve been doing lately is sleeping. Ive been exhausted lately and have been taking naps around the clock. Definitely text me anytime. My internal clock is so off lately that I just might be awake at anytime. ❤️❤️😂
Thank you honey...I hope that all is well with you.
I'm so sorry to hear you're in such pain. Everything is magnified when in pain, I know! Try and get your doctor to prescribe this Fentalin as you must try Everything until you find something that controls the pain. I just hope you'll find something that works soon ❤️
Hi Barb, Just wondered if you had considered Amytriptyline for the pain? I know it is an anti depressant but I found it very helpful. I used it several weeks ago when I just thought I would rather die than put up with the pain. Like you I find opiates cause real constipation problems. Hoping you find some relief. Love Ruth x
Oh Barb, my heart goes out to you. So much pain and me feeling sorry for myself re holidays. So sorry you feel so much pain xx
Hi Barb,
I'm so sorry to hear that you are in pain. I haven't heard of those patches you mentioned, but it sounds like it is worth looking into. Can you get them on prescription? I would talk this over with your GP or oncologist. You should not have to suffer from pain. You deserve relief and to be able to get on with your life.
I am so sorry to hear you are suffering! Last year this time, right after having radiotherapy, I was in unbearable pain. Opiates made me sick and constipated, so I threw them out! I was taking ibuprofen every 4 hours and I was miserable. I started taking CBD oil and started to feel better and about four months after my therapy I could go with out pain pills. There are days when I still have pain but they are less frequent. Last week, I went trail riding with my daughters in Rocky Mountain National Park (mind you I haven't ridden in 10 years) and needless to say it took a week for me to recover, but it was well worth it. I don't know much about the Fentanyl patches but you should definitely talk to your doctor about it.
I ride a lot but recently I’m in too much pain and not enjoying it as much... not fair on my horse as he’s not getting attention either and I live him so much
Thank you for letting us know how painful radiotherapy is because my Oncologist is trying to talk me into it and I've truly suffered enough. As we all have.
I am sorry you have so much discomfort. My friend uses fentanyl patches. They are a transdermal method for pain and they work for her. I would def get it n try- only precaution is if someone applies it for you they should wear a glove. It gets changed every three days and have to rotate sites. Hope it does trick for you.
Hi Barb. I was on fentanyl patches for 2 years. I ended up with 4 compression fractures in my spine l1 to l4. I had a procedure called kyphoplasty which is injecting cement and it really helped with the pain over time. The doctors also gave me the strongest dose of radiation in that area. The pain was really bad for awhile and finally subsided. I have a very dark patch on my back where the radiation hit. Fentanyl is a great drug used for pain release. It releases the drug into your body slowly over a 2 or 3 day session. I was on 48 hours and changed the patch. They start you off on 12 mg then 25 and so on until you reach an amount that you can tolerate . You can still take break through medication if you require the relief. The reason I went off fentanyl was that my doctor wanted me to go on Ibrance and you can not be on this patch and take Ibrance there is a drug interaction. Sorry I was so long winded I really hope this helps. Shelby
Barb, I am on Ibrance and the Fentanyl patch and no one has said anything about them not playing well together. It is a life saver. I change the patch every 72 hours and take hydromorphone (Dilaudid) for break thru pain. I couldn’t do what I do without it. Yes, all the opiates cause constipation but I can easily control that by using myralax if it gets bad. I can usually control it with diet...occasional lunches of dried apricots, dried figs, dried cranberries, some pecans, and a few pieces of chocolate cut up and mixed together like a trail mix. That usually sets me right again. My body seems to have gotten used to it so I need to do less to control the constipation. I take 1-4 Dilaudid a day, just depending on what I’m doing. I’d probably take one before I went riding if I rode. I usually take one before I play with my youngest grandchildren because I always overdo with them. Some days require more than others. Please don’t be afraid to try it. It is not fun not to be able to do the things you want to do. My oncologist says it’s his job to make sure I get to do that and so far he is doing a great job. I would take the maximum doses of the strongest medications you have now and if that’s not working, let your oncologist know. I know I was trying not to take too much in the beginning because I worried about getting addicted. Forget that, if you have pain, treat it. They will get you off the meds when the time is right! Hugs, Elaine
You are so right...that’s what I’ve been doing...trying to tough it out and feeling miserable...no point suffering
Barb xx
Being in constant pain is awful. I spent a year in excruciating pain before my diagnosis as my family doctor said it was just a tear in my hip. Once I got my hydromorphone it helped a lot. They really constipate me but I used Restoralax everyday and bacteria pills work also. They can raise the strength of your meds.
So sorry to hear about the pain... You have surely had a touch ride over the past couple of months ( progression, radiation, pain)... I am still a pain management novice so can't share any experience in this but wishing you all the best and hoping you will manage to find something to help manage it. Thinking of you
Barb, Can you tell us more about the infra-red sauna? How did you chose which one to get? Does it help you feel better quickly or more over time? I think I'd like to get one...... just the thought makes me feel good!
I just bought one on Amazon...the make is Firzone and it is like a little tent with a chair you sit in with your head sticking out...one of my cats was very mystified by this it was hilarious..couldn’t fathom what the hell was happening to his mum!!..my other cat sits in it when I’m not using it
It does feel lovely especially in the winter...I get bored though so read a book when I’m inside...there are two zips at the front to put your hands through
I paid about £200 for it...I think it helps and I read somewhere on here that the infra red rays are good for cancer sufferers..how true that I don’t know
Hugs Barb, I am at the point where pain can be so bad just lying still in bed is misery. I am still trying to make do with the meds I have, going to mention to my doc when I see him next month. Will be following this string.
Well I took a 10 mg slow release morphine last night and one this morning...will see if that works better
It’s bloody awful and I can’t live like this
I’ve tried all sorts of combos...I even make my own turmeric paste but nothing gets rid of it...I get depressed about it then that makes it worse ..I’m tho king of joining david Lloyd and starting to swim as my back muscles are weak which I’m sure doesn’t help
So sorry you are in such pain. You are right that all those pain killers are terrible for our stomachs! The constipation and stomach upset is very hard to take.
My boyfriend gets the fentanyl patches as he has severe arthritis. It works for him. He has the lowest dose patch and it brings relief without the side effects.
I would ask that you be switched to this patch. He gets a new patch every three days. They are effective for 3 days.
I'm hoping this helps you and your pain and side effects are relieved.
And, you have the right to voice how you are feeling under our crazy circumstances!
It must be hard. Im not at that point of such intense pain but Im dreading it. I do have some L1 pain but acupuncture helps me. Took a few sessions before I felt the effects but definitely keeps it at bay. Is that something you could try? Sorry I dont know about the patches you mentioned.
I know some people do have cannibis for pain dont they- not the CBS oil you can buy at Holland & Barrett but actual cannibis. I know its a bit controvercial and I wouldnt have a clue if you do anything else other than smoke it nor where you'd get it from - Im clueless on the subject and not sure Id dare try it but Im just trying to think outside the box for you. I wish I had a magic wand for us all 😌.
I've read all this thread and now I don't remember, Barb, if you mentioned a pain specialist, but that would certainly be something I'd want if I had as much pain as you describe! And there may be ways around the Fentanyl - Ibrance issues. My husband has trouble with most pain meds but there is a newer one that he can tolerate and I can't think of what it is called, but a doc who knows pain treatment really should be able to help you. My long time onc who retired at the end of last year told me that in all her years as an onc she had only one patient whose pain they could not manage successfully, and that was a woman I knew and who had multiple personality disorder, which can really complicate alot of different medical issues. So what I took away from that discussion was that our pain can be managed with some effort. I'll physical therapy to the list of things that help sometimes. I have found cbd lotion/cream to be helpful for my arthritic pain. And pulled muscles. But that is mild pain, not heavy duty pain! I do hope you find good options to manage your pain, and that you will be back in the saddle soon!
I’ve not tried the patches. However, my natural path doctor prescribed me ibuprofen in lotion form. It’s called a compounded ibuprofen and is rather expensive but it seems to work. It also doesn’t bother my stomach that way . She also prescribed something for nausea and a lotion form called Phenergan which is really nice too. It’s expensive but it goes a long way.
I found that the Fentantyl patch does help alleviate pain however it also alleviates life. I was to the point when I was almost comatose with the patch on. I would get up in the morning eat and then go back to sleep. Then I would get up in the afternoon walk around a bit and go back to sleep. Evenings were the same. After a month I finally took the patch off myself and decided the pain at least allowed me to live. I get my most relief from Ocycodon. I take Amitiza with it which is a drug designed to prevent constipation. I also take a stool softener and Dr. Schultzes formula one with it. It sounds like a lot, but it really works. It is really nice to be able to take pain pills without the threat of constipation.
Hi Barb! So sorry to hear about your pain. Pain management is critical to good healing. I read in one of my Cancer books to drink 1/4 of a glass of Aloe Vera combined with 6-8 oz of water first thing in the morning on an empty stomach. I cut up lemons & put them in water in the refrigerator. It’s a refreshing first morning drink that prepares my stomach for the onslaught of pills I take daily. It has kept me from having digestive problems.
Aloe vera juice may have additional digestive benefits, such as reducing the incidence of stomach ulcers and improving digestion, according to research from 2014. The many anti-inflammatory compounds in aloe vera juice, such as vitamin C, may contribute to these digestive effects.
Perhaps that will help with your digestive problems. There is a lot of research about it. healthline.com/health/food-...
Hi Barb, I am so sorry about all your pain. I have pain too and some days it just wears me out. Fortunately for me I can take a half of a norco and that seems to help. Somebody should definitely be able to help you. Sheesh the pain is real and helping alleviate it or some of it should be part of our whole treatment plan. Hang in there and it’s okay to feel sorry for yourself but from your posts I know you will bounce back. Prayers and hugs 🤗 for you.
Pain makes all of us small. I have been on a Fentanyl 50 mcg patch for over a decade. Not because of cancer, but because my sciatica was so painful. It works beautifully for me but it does cause constipation, too. The whole goal of medication getting us through metastatic cancer is not to cure us, but to give us a longer life that is still full of quality. You cannot have quality of life if you are in pain. Sometimes we have to use our "bigger" voices in order to get our oncologists to listen. I know some very lucky people who have incredible oncologists who listen and care. I have one who is overworked and often dismissive of me. I have learned that unless I take an adamant stand, she will not always take MY opinion into consideration. It is not ideal, but it is what it is, so I am careful to do my research and speak up.
I just replied further up the chain about my good experience with the patch, but wanted to say that I am on a 25 mcg patch. In my clinic they look at the amount of breakthrough medication you need before increasing you to a higher dosage. I started at 12.5 and just increased once and it is enough. Elaine
That’s exactly why I am on the 25 mcg patch. On the lower one I was still having to figure out if I was going to do something that would cause more pain so should I take a pain pill before I did something or was it time I could take another. On the 25 mcg patch I take so few that I don’t have to worry. Have not taken any extra today and have been out bike riding with my grandsons. I run out of energy before I have pain but my 7 y/o grandson says that’s because I’m old!
My daughter was given Fentanyl patches when she had a rare nerve condition pain. It worked for her. I’m so sorry. Pain can make all the difference in how you live your life. Good luck!
Oh thank you...pain is so horrible ...I’m depressed over it because it makes me feel like not doing anything which is in itself contributes to depression and I don’t want to go there again!!
Going to join a health club so I can start swimming to strengthen my back muscles
Yes I’m going to give it a go...still tired from the radiotherapy at the moment but will start gentle swimming and build up from there...just feel as if I have very little muscle tone in my back despite the yoga and riding which may be contributing to the pain
Just wondered if you considered cannabis and CBD oil or coffee enema for pain? I did not take one pain pill for six years from my first diagnosis and believe me I had pain when I was diagnosed with MBC! It's a great pain relief as well as stress and anxiety!
Do not get me wrong I’m not saying I will not take pain pills if I have to, but for now I'm fine and the oils are help me! I think it's less harmful to our body than a pain pills ... that's just my opinion!
I have experience with constipation due to pain meds. The one thing that helps is sugar free jelly belly jellybeans. They have to be sugar free. It has sorbitol, which is a stool softener. I know that this sounds crazy but it works.
Hi so sorry to hear you are in so much pain. There might be some natural remedies that you have not heard or tried. If you feel like it give me a call and maybe there is something you can do. 310-403-3290.
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