Terminal cancer

[Victoriapain]

My dad is currently on 90mg of mst and oramorph of 15ml every 2/4 hours.. Does anyone know what the maximum amount that can be used before syringe driver will be used? Thanks x

[PFKAAde]

I don't know at what point they would swap to a driver, but I do know that you can get 150mg slow release morphine capsules and 50mg instant release tablets.

And that for palliative care there is no real limit to what they can prescribe - it just depends on the doctor and various other factors.

Sorry to hear about your Dad, it must be tough for you (and him).

[Victoriapain in reply to PFKAAde]

Thank-you. I was hoping that the mst could be upped before driver and means a little while longer. This journey has been horrific. Diagnosed with lung cancer in December (never smoked through his entire life) at 59 it's heartbreaking. Thank-you again x

[PFKAAde in reply to Victoriapain]

So sorry to hear that, it must be very tough for all of you.

I don't know if the diagnosis and the respiratory depression side-effects of morphine would be relevant in this case, but there are reports of doses upwards of 1g (or 1000mg) being given in palliative care.

I'm not suggesting that they would give him a dose anywhere near that, but I know from personal experience that they can prescribe much more than your dad's current dose orally.

Maybe talking to your dad's care team about your concerns would help? They should be willing to discuss his care with his family, because at the end of the day this affects you massively and you need to be kept informed and involved and have your questions answered.

All the best.

🙏🏻

[Victoriapain in reply to PFKAAde]

Thanks. The palliative nurses have been amazing and unfortunately visited while I was not there. I think my mam doesn't understand it all and to be honest Im not surprised. It wasn't a planned visit yesterday so just wanted a bit of advice to put my mind at rest till she comes back on Tuesday. Surprisingly my dad's breathing is totally fine, slight cough but nothing alarming. It's the places it has spread that have caused the pain. Appreciate your help x

[Lanark in reply to Victoriapain]

Sorry to read of your dad's condition. It is a horrific journey. But good meds can mean a relatively pain free journey for the patient. My brother was diagnosed with Pancreatic Cancer in early February. He got less than 5 weeks. The Palliative Care team from Marie Curie were magnificent. Please make sure you get a chance to speak to them about meds - if you are not around when they visit your dad then phone them up and speak to them. Find out the details. Time is short.

I found that while I was trying to work out the details (my brother's symptoms came on VERY suddenly whilst at work)... coming to terms with what was happening... figuring what time might be left... trying to get to grips with the severity and highly aggressive nature of the condition... Time had already left the building. My brother was only 60 years old, fit, healthy, non-smoker, light drinker, healthy eater. He was my best friend too. It is heartbreaking.

[Victoriapain in reply to Lanark]

So so sorry to hear about your brother and thankfully I am able to be there at each visit.. I have witnessed this a few times as I was a carer for over 12 years and done quite a few palliative cases.. It's totally different when it's your own though.. Heartbreaking x

[Saffy1999 in reply to PFKAAde]

I just wanted to say how terribly sorry I am and for your Dad and his suffering. X

[Victoriapain in reply to Saffy1999]

Thank-you x

[Bertiedette]

God bless you and your Dad xxx

[Victoriapain in reply to Bertiedette]

Thank-you x

[Kaz76]

My thoughts are with both you your dad and the rest of the family xx

[Victoriapain in reply to Kaz76]

Thank-you x

[Pippins2]

My thought are with you. I went through it with my dad, he had colon cancer with secondary lung cancer. So, so sad x

[Victoriapain in reply to Pippins2]

Sorry to hear about your dad and Thank-you x

[Mistydawn]

Victoriapain, I lost my Mum to multiple myeloma almost a year ago and watching her pass away was heartwrenching.

Would you be able to phone the district nurse for clarification or even your Dad's GP or palliative consultant? I used to phone the district nurse if I missed her visit. Towards the end she would leave a brief note.

The driver as I understand it is only used if the patient is in a great deal of pain and unable to swallow.

Take lots of care xx

[Victoriapain in reply to Mistydawn]

Thank-you for your reply.. We do have the palliative care number but Hillary the nurse who is dealing with us is off until Tuesday. He managed to go out for a little while yesterday with a friend. (in his wheelchair). I'm keeping a close eye on things and if I feel I need assistance before Tuesday I will ring. Sorry to hear about your mam too. Bless x

[katieoxo60]

Sorry to hear your sad news, when my husband was terminal he had oramorph, with no dose limit as I recall until he went into hospital in the final weeks, where it was given by syringe driver and he had fluid drip. At home I used to change the pain patches as well.Take care will be thinking of you. xx

[Victoriapain in reply to katieoxo60]

Thank-you.. Sorry to hear about your husband. My dad has decided to spend his last days in a hospice aswell. That's sort of my aim in the question. Obviously the higher intake of morphine suggests closer to the end. X

[katieoxo60 in reply to Victoriapain]

Your right in your assumption, the more frequently morphine is needed the nearer the end is. I used to pray for it to be over so my husband would not suffer anymore. Wish there was an easier way but sadly until the body is ready to go we have to continue. Take care you sound quite prepared my thoughts are with you xx

[Victoriapain in reply to katieoxo60]

Thank-you x

[Julesgettingthere]

Hello Victoria

So sorry to hear about your dad - my mum has cancer too, but hers is lung cancer.

Me and my mum both use the Pain Form and the Brain Injury Forum too. I have just started posting on the Cancer Forum and 'met' some nice people there.

I dont know enough to give advice, but just wanted you to know our thoughts are with you

Jules

x

[Victoriapain in reply to Julesgettingthere]

Thank-you. I haven't joined any forums but I do use them to look up certain topics. Was unable to find anything about my question so I just asked on here. I have received some lovely replies. My dad's cancer started primarily in his lungs but has spread to his liver, stomach and to be honest it's growing so fast it's probably in alot more places since his last ct scan. Hoping your mam is doing alot better. Be thinking of you both aswell x

[jenray]

My husband has advanced prostate cancer and a heart attack last March and is now in a hospital bed at home and can walk a few paces only now, and he's on 120 mg slow release morphine capsules, one in the morning and one in the evening, and oramorph if he needs it which he does sometimes. He's 69 and we've been married 48 years, it's very hard indeed to watch him getting thinner and thinner as he wastes away, but he's still eating so hanging on and stays contented in himself...watches a lot of TV, and that distracts him from what he's going through. I'm very sorry to hear about your Dad. It's a very painful experience for all concerned...great big hugs to you and be brave for him. XXX

[Victoriapain in reply to jenray]

So so sorry to hear about your husband.. Must be a very very hard for you. My dad's on 90 mg mst am and pm but is using oramorph frequently. He allowed to have 15ml but my mam won't give him that dose as she says he acts funny. I really don't think my mam understands at all. I'm going to speak to speak to Hillary and have a talk to my mam on Tuesday when she next visits. I think his palliative nurse will put he's mst up on next visit. My dad is barely eating at all. Hasn't for over a week. Thank-you to take time out to reply to this even though your going through such a awful time. Feel free to message me privately if you would like to. Bless you x

[jenray in reply to Victoriapain]

Thank you for your kind reply. With regard to the morphine affecting your Dad, yes, it does but if it's controlling the pain he's in then 'acting funny' is nothing to be concerned about. My husband has good days and bad days, on a bad day, he'll sleep the entire day only waking to eat. The palliative nurse told me that when he stops eating, he's in the last stages of his life, so have a quiet talk with her if possible. Your Mum will need a great deal of help to get through this really hard time...and, on morphine, my husband's mind can wander and he can be really confused but, at other times, he's completely lucid. An awful trial for all involved...sending you great big hugs...XXX

[pixiewixie]

Victoriapain & jenray, I have just read your communications & I am so glad that your dearest loved ones have such special people who care for them so much. I am sorry of the ongoing anguish that you & your loved ones are going through. If at all possible, communication is so important at this time as life ebbs towards another horizon. It may be a nod or a gentle touch but it is the understanding that you are there for them & even they for you. I have worked as a Marie Curie Nurse & in Hospice work & understand the pain of watching those you love fading. I also understand from a personal perspective as I too am watching my poor old dad wearing out & his desire to move on to the next part of his journey. The hardest part is watching him so vulnerable & fragile & looking at my 86 year old mother knowing that he is her world, her life and for her this is heart wrenching as Mistydawn so deeply understands. Soon his physical presence will be no longer. It can be hard to understand that; "death is as much a part of life as being born".

I am thinking of all you brave, brave people who responded to Victoriapain. From my heart I wish you Strength, Peace & Love, Pixiewixie

[Victoriapain in reply to pixiewixie]

Thank-you for your response and yeah thank you to everyone who has responded. It means alot x

[irishdance]

Theoretically no real limit. A syringe driver is usually used when there is difficulty swallowing.

If your dad is finding the oramorph a bit slow acting - there are other opiates just for cancer pain. They are much quicker acting but last a shorter time. Actiq or Effentora are an example - the active ingredient is fentanyl.

I am very sorry to hear about your Dad.

[Victoriapain in reply to irishdance]

Thank-you. We now have some morphine injections in place for when the pain it's so bad.. X

[irishdance in reply to Victoriapain]

Do you need to have to wait for the nurse to give them ?

The drugs I suggested above are intended to fill the void.

They are as quick acting as injections but the patient can take themselves. Also there are no injections or anything like that etc.

[Victoriapain]

Yes I think we do.. But the nurses are visiting everyday at the moment and are on call anytime. I will suggest these alternatives though tomorrow. Thank-you xx