Re treatmen

Daloni, 

I hope you had a good weekend hun,  

love Max xx

Hi Max  I see because you forgot the 'T' at the end of treatment you have started a new post! Good for you, the other one was getting a bit long! Lol! I just wanted to say good luck for you with your treatment later today. I hope they zap Tommy good and proper! Also good luck as I see you have also got treatment today! I'm sure you will both sail through it! Got everything crossed.

About this topic, has anyone been on Fentanyl Patches for pain? I had a 3 way video call on Thursday, the other 2 were my GP and the Pharmacist from my practice! I was in tears with the pain and asked if there was anything I could do to help myself. I hadn't had even two hours sleep in a row for quite a few days and I was exhausted and in pain. The discussion ended by me agreeing to try these patches together with the top up morphine I was already using but to stop the slow release Morphogesic altogether. The problem was, I had to wait 12 hours after taking the Morphogesic before I could put on the first patches. Then it takes approx 24 hours to start to work. As you can imagine Friday and Saturday were horrendous but things settled a bit by early Sunday morning.

I just wondered if anyone else was on these or had tried these would you let me know how you got on please!

I hope everyone had a lovely weekend and I hope you got pampered, while resting!

anndanv

Hi Annette

The pain you are in sounds truly awful. I do hope you can get on top of it. I have had a lot of success with Butec patches which are very similar to fentanyl patches. Both are synthetic opiates and both are very strong. 

I switched over to the patches from long lasting tablets several months ago. It did take a good 48 hours to really settle but after that initial couple of days I found I was fine. I had quick acting tablets on hand for breakthrough pain but after a couple of days I no longer needed them. I could just pop on a new patch every week and forget about it. I did feel slightly spaced out to start with but that passed as  I settled down and the pain was brought under control.  I found I did not have any side effects that I noticed 

I started on a low dose of 10 micro grams per hour and that was fine for a while. But then I found I needed to add in a quick acting oxycodone tablet to get through the night without waking in pain. I talked to my GP and he increased my patches to 15. I was experiencing more pain as the tumour in my spine was growing and pressing on nerves.

We went on like that for 9 months or so until I had the radiotherapy flare up in April.  By that time I was on a 35 micro gram patch. I’m back on long lasting oxycodone tablets plus liquid oxycodone for breakthrough pain at the moment but I hope we will get back to patches at some point. They are so much easier. 

That’s my experience. I hope it’s helpful 

xx

Hi Max and Devon Cat 

Just a quick note to wish you well as you start treatment. I hope you’re both ok and resting up. It’s so frustrating, I know. I just want to get on with life but the chemo has put the brakes on for me. 

I spent yesterday at the hospital having a kidney function test and CT scan. Goodness it was boring. But it’s done now. Today I am taking my electric bike for a service in the hope that I’ll be able to ride it again. If not, my daughter will be using it. Actually she will probably use it anyway. I wonder if I can train the dog to run alongside? 

xx

My husband was on the patches...they did work very well for his pain, but he had headache and nausea when they started to faint..just the day or so before the new one was due..hope it will work for you, fingers crossed.

Pet

Me again, I’ve only just noticed the typo treatmen lol should of read re treatment,  oh Daloni I’m sorry you had a bad weekend as well, but glad to hear they are sorting it for you,   Annette your story made me laugh,   I’ve come to the conclusion, that your all highly educated people and I’m right out of your league’s, but I do love that you all have taken me into the fold, sorry for being soppy,  wishing everyone a good day xxx Max 

Hi sorry to hear you are in so much pain.

fentynl patches are about as strong as you can get so hopefully that will help.

let us know how you get on.

Daloni I found that oxycodone was the only thing that got me through the night good it seems to be helping you 

I am still taking paracetamol and codeine for my headaches and it does help but the headaches do come back 

Hi Annette, 

No zapping today hun, had fist lot of pembro, awaiting appointment for zapping, I like that, I'm calling it that from now on. 

I hope your good hun, I'm sorry to hear your in pain, and hope they sort it out for you quick smart. 

Love Max   xx

Hi Gang, Thank you for your replies, they really do meek a difference!

Hi, I did remember you changed to patches but didn't know what they were called! I know exactly what you mean about the first 48 hours, it really took me until Sunday evening before I felt some proper relief. I did need Sevridol 20mgs a couple of times, it's also a quick release morphine. I've started on 25 micro grams which means two patches a 20 & a 5 as there isn't a 25 m/g one. I was also told to take the top up, as and when I needed it and to keep track of what I needed and things will be assessed once I've been on the patches for a fortnight. I have been on OxyContin (slow release) and Oxicodone (quick release) in place of the morphine but after about a week and a half, I had a bad reaction to it. I was the same with Pregabalin and Gabapentin that lots of people swear by! Also my GP and Practice Pharmacist said we had to be careful now about my liver and it seems the patches bypass the liver, which sounds good to me!

Pet1968 Thanks Pet, that's good to know. I will watch out for that. I hope your husband is fine now. I did look at your profile and he wasn't mentioned so I hope the reason he needed the patches was for something other than cancer!

ruthjp Hi Ruth,. I was told at first when I started on slow release morphine that paracetamol was the best thing to take with it as it enhances the effects of the morphine. I'm glad they help but have you mentioned to your GP if they are frequent or severe? Thanks for your good wishes!

Hi Max, We are ALL in the gang here (an exclusive gang!) as we are all in the same boat! Cancer does not discriminate regarding age, sex, colour or background and here we don't either! Anyway what a thing to say about yourself and I'm sure the others agree with me! I do hope your zapping gets done soon! Thanks for your reply!

Dear , anndanv, , , and rest of the Gang.  Looks like this the week of treatment for many of us

 Dear daloni,  daloni, so sorry that you had a bad weekend and hope treatment is helping. It would be great if you could indeed ride your electric bike. Wanted one the minute you got yours, but I live on a hill and do not think I would not make it downhill without a tumble, so stationary bike for now, but I can dream. Hope your brakes are off soon and you are riding around with the wind at your back. I know Kidney function and CT are boring and hope your results are good.

Dear Annette, sorry to hear about the pain, its never pretty is it?. Woke up in the middle of the night myself with horrible pain, even with oxycodone and a lidocaine patch.  Better today, but the pain interferes with my gardening and any activity. Hope all is now better with you.

Max and Devon Cat, good wishes on your treatment, may the time fly by and no side effects.

My treatment will start soon, but do not have a date. they have ordered a new drug romosozumab, an anabolic bone treatment that can increase density of bone up to 13-18%- that hopefully will help keep the bendamustine from future wrecking my vertebrae.So will have BR treatment first followed the next week by the romo. fingers crossed, since my spine is the source of my pain. Its easier getting appointments here now so that is good, we had almost 3 months of no treatments because of covid. How is the pandemic doing  across the pond?  Worried about all the protests causing a new surge. Protests here are comprised of all ages, colors and good will.  Found out today the police arrested the looters, not part of the protest, bu career criminals that were organized- many are already in jail.

Hugs to  all the Gang, 

xx

Millie