Management of side effects

Thanks Nicola - that’s very helpful. Will pass on. Xxx

Thanks Becky - that’s a good tip! Hope the rest of your treatment goes as smoothly as possible 

Just wonder if you and your mum have had a look at the low FODMAP diet. I have seen it mentioned here several times and wondered if it might help. It's often used for people with IBS.

Thanks will take a look

Quick question for those prescribe oramorph - what mg did you get prescribed? Thank you!

I was prescribed 1 x 5ml spoonful of 10mg oramorph up to 6 times daily … but I’ve not had any opiates in weeks .. awful stuff for constipation  better to try regulate stool softness with hydration/soft foods and meds.

Becky xx 

Hello sp1993233875 

My husband made up a chart with my painkilling drugs and the times he gave them to me and I honestly can't remember the strength of the syrup.  But I am pretty sure that 10mg is the standard strength and the difference can be in the amount taken.  He used the syringe that came with the bottle to extract the the exact amount prescribed.  I was told that it was important to take the oramorph and also the morphine capsules that I had regularly to avoid breakthrough pain, hence the chart.

Becky is right about the constipation, taking Laxido throughout is essential.

Irene xx

Thanks Irene - so you had capsules as well as the liquid form? My mum just has liquid and some topical gel atm. Hoping she can get some capsules too as she’s still in so much pain 

Hi. I’m so sorry to hear your mom is going through so much pain. 
I have been on fentanyl patches since the beginning of the treatment plus fentanyl pills for breakthrough pain, especially after BM. However after finishing the 5 weeks of radiation I started experiencing horrendous pain with BM and even when passing gas. Sharp throbing pain and spasms which wouldn’t go away with fentanyl or morphine. Apparently the radiation has done some nerve damage which are over reacting now so I have been prescribed buprenorphinum patches, pregabalin pills and methadone only before BM to avoid breakthrough pain. In order to counteract the constipation effects of the opioids, I am taking 2x naloxegol pills every morning, plus macrogol stool softener. I can’t say I’m pain free, it’s just manageable now.
Do not be afraid to ask for pain medication. No one has to go through such pain and this is not the time to push through; as the body is already in a lot of stress and needs rest and calmness. 

Thanks so much - I am so sorry to hear about what an awful journey it has been for you! Have you been treated in the UK or US?