Hi Sinead,

I've got myeloma, diagnosed in Oct 2016, I managed to achieve complete remission in Feb 2017 and am awaiting a scan to see if I may be starting to relapse. I've been in an increasing amount of pain lately and for over a week have had severe, unexplained rib pain. The last lot of bloods showed that my paraprotein was detectable but not measurable.

So I understand a little of what your dad might be feeling. We who have myeloma are constantly aware that we're just waiting for it to kick off again, knowing that it's incurable and will relapse at some point.

The difficult thing is how to assess things. This disease is so individual that no two experiences are the same. While having what i presume are plasmacytomas in the lungs would seem to be a generally bad thing, until they're treated, there's no way of saying how serious this episode is or how it will affect overall survival. As you're probably aware, all the statistics apply to large groups of people but say nothing for the individual.

In general, I'm not too sure what advice I can give you. For me and my family, being open about everything has helped. No questions are too hard. And my family have been marvellous advocates for me, especially as I'm off my head on morphine for much of the time.

Extra-medullary, or soft tissue plasmacytomas are usually thought to be more serious than those of the bone, as I understand things but I'm not exactly sure about that. I know I had a lung nodule that disappeared after about 6 months.

I'm sorry that I've not been able to be of much help but maybe if you can be a bit more specific with questions, I might be able to help more.

In any event please keep coming back to chat and get any support that we can give you. This really is a very helpful and supportive site, although my alternative way of looking at things can sometimes upset people.

Best Regards and I hope your dad responds well to any treatment.

Taff

Hi Taff,

Thank you for sharing your story with me .I was delighted to see your post it was a whirl wind of a day I thought no one would reply because I felt what you said was right I wasn't asking specific questions.Anyway i brought my dad to the doctor today they gave him strong pain killers and if they dont work they're going to give him morphine .I rang  every few hours and the pain went from 10/10 to  5 /10 so the doctor said my dad doesn't have to call to him again we can go up for the next meds he will give him as he knows hes not able. It was still shush today with my mam with us .I was talking as open as I could about the level of pain and that morphine is ok to manage pain. Do you think because he took more than the dose the doctor recommended that he will end up on morphine by Monday? Such a draining time worrying and crying .its so weird because it's such a helpless feeling. Thank you again for replying.Sinead 

Hi again,

If your dad has not had morphine before, I reckon he should be able to become pain free. I've suffered from chronic pain for 30 years, since long before I got myeloma. And I've been on morphine since diagnosis. There's no doubt I'm dependant on it now, though not addicted. You don't get addicted if it's taken correctly for pain.

I remember the time when I actually became pain free. An immediate feeling of guilt and that I should go back to work. Nonsensical but odd feelings are one of the things we have to accept.

When first diagnosed, my GP made it clear that if it was possible, it was important to get as pain free as possible and to maintain that state. I now vary the dosage myself depending on how I'm feeling.

It's true to say though, that many people are reluctant to take morphine as well as some other drugs such as anti-depressants. I was originally prescribed Duloxetine for my chronic pain, which helped somewhat but as it's an anti-depressant, it also helps on that side. I'm incapable of pondering or worrying, which is very freeing. I simply don't care about having cancer or being ill.

In short, I'm of the opinion that we should take whatever's necessary to make us as comfortable as possible, at this moment. Because it's all about moments. Past moments are done and gone. Future moments will come along in the fullness of time and are unworthy of consideration. All that matters is 'How do I feel now?', 'Am I showing people that I love them now?', 'What pleasure can I take from this moment?'

Morphine's for winners. Hope it works for your dad. Tell him there's somebody out in interwebland who's thinking about you both and wishing you well.

Taff

Hi Taff ,

I thought I'd let you know my dad is now on morphine since Monday it was a very rough weekend until Tues from the medicine .question do you think the 5m patch of morphine worked for you or does it take awhile to work or should my dad know straight away? My whole family was so grateful for your input it got them and more importantly through the last few days they understood manage the pain and that's what we are doing tge specialist saw him Tues and Wednesday and they are starting a new treatment in Jan my dads is double myeloma I'm not sure what that means but his specialist did say hell be here for another while so my dad laughed .hes a lot weaker at the moment .question will he be very tired from the 5m patch of morphine ? or what should he expect to be like ? Thanks for your input we really appreciate it on this end thank you.

Hi Sinead,

Hope your dad's feeling a little better by now.

I didn't have a morphine patch so, I'm unaware of the doses and how soon an effect might be felt. I was given oramorph initially, 5mls or 1 tspoon, every 4 hours. Each 5ml dose contains 10mg of morphine. I was also given slow-release tablets, 10mg twice a day., so about 60mg per day.

I've since had my slow release upped to 20mg twice a day and take 10mls/20mg oramorph up to 4 times a day. I always take the slow release but vary the oramorph, sometimes taking none for weeks at a time, more usually taking it once before bed, as my legs get worse at night.

Oramorph works for me very quickly. I think it's at its maximum in the blood in about 40 minutes but starts having an effect earlier than that.

I'm not sure how the slow release stuff works but I think the idea is to mostly control the pain via slow release and use the oramorph for what's known as breakthrough pain. There's a sort of background level of pain and a more acute/severe, transient pain, if that makes sense.

So generally, your dad should feel the effects quite quickly. It's important to liaise with the doctor through initial trials to establish the levels required because your dad needs to become as pain free as possible and then maintain that state. It's much harder to treat pain once it's established.

In the early days, head-wise, i was fairly out of it a lot of the time, with morphine and chemo. I'm less befuddled now for much of the time, though there's no doubt I'm affected. But I don't care. Nothing's ever going to be as it was previously, for anybody; I just go with the flow.

Hope this has helped somewhat.

Hi Alf,

I'm glad that you feel not too ill in general. I'm the opposite, feeling ill nearly all the time, just differently ill from day to day or moment to moment. I know there's a lot of people with myeloma who lead vigorous, active lifestyles, my universe is my chair.

My quality of life, though different, is much the same as theirs. I just have different values and see import in different things.

I do recall though, the times when I actually had a feeling of 'feeling good', few and short though they were, and sudden realisations of, 'Oh, but actually, I'm seriously ill', so I know exactly what you mean.

And I often feel as if I'm outside of the normally spinning world. I've felt like that in a crowd of people, totally isolated, as if I was invisible to everybody else going about their business. It's not a sel-pitying feeling, just an oddity that we notice.

Anyway, I hope you continue to feel un-ill for a long time to come.

Taff

Hi again Alf,

It's not stoicism as such, but being somewhat cognitively impaired due to myeloma and its treatments, I lack the capacity to care about things. I can't hold a negative thought in my head for more than a couple of seconds. Very freeing for the most part, although I have to say I had a bit of a breadvan this morning when I got over emotional over nothing. A few apologies and a few hugs and we were all fine again.

My main mantra is 'Ent ded yet'.

Good chattin' with ya.

Taff