[FrancesParticipant]

I live in Wales and Wales has always prescribed it. Last year I had a two month ‘holiday’ to see if the stomach problems and tiredness might ease off, but they really didn’t; so I guess it stays in your system for some time. However, I know it works for me in keeping the cancer under control so I don’t want to move on to another drug.

[FrancesParticipant]

Thank you Dusk and Fiona – I’d never heard of GCSF but I’ve looked it up and it’s useful to know about.

[FrancesParticipant]

I’m on partial remission, still taking lenalidomide and a low dose of steroids. My last blood test showed that my neutrophils were low, and so I’ve had a couple of weeks ‘holiday’ from the beastly drugs. I have another blood test next week. My consultant hasn’t really explained what this implies, though we’ve looked it up and seen that it’s made me more vulnerable to infection, but I haven’t been given any warnings and I don’t take any precautions. Most of the time we live in the middle of the country anyway and there are fewer infections around. I’ve been very lucky with not getting infections for the last year or so, so I’m keeping my fingers crossed.
So I haven’t really got any useful advice to give Dusk, except that I seem to be in the same situation, and looking for advice myself.
Lenalidomide gives me an upset stomach, but that’s another story…

[FrancesParticipant]

It seems very unkind of your consultant to say that most people ‘sail’ through treatment. Also not true – people vary hugely in their reactions. But you will find that you get used to the complicated drug regime and better able to cope with it.
It sounds as though you need support which you aren’t getting. Have you got a Maggie’s Centre anywhere near? They are lovely places and there’ll be people you can talk to.

[FrancesParticipant]

Blood tests are the first port of call, and often the way people find out that they have myeloma in the first place. They indicate what the paraprotein levels are. – the bad guys. As far as I can tell, up to a pp level of 30, it’s okay. Warning bells ring beyond 30. They also give indications of kidney damage and general functioning. Xrays show if there’s been any bone damage – though you’re usually aware of it if there has. MRI scans show the same in more detail. The most important test, I think, is the bone marrow biopsy which shows if there is myeloma in the bone marrow and how much.
I have blood tests once a month, and the other procedures les frequently.

[FrancesParticipant]

If you’re nervous about the test, then get them to give you any pain relief that’s going – they shouldn’t make you suffer even in anticipation. I’ve had four so far – they aren’t pleasant, but they’re actually not too bad, and the nurse who gave them to me was very good, talking me through all the sensations.
The only time it was really painful- the initial injection – was when my back was very sore and inflamed and I think they just thought I was making a fuss. I’d just got a crush fracture I found out later and it had affected all my back muscles. Next time if that happened I’d insist on more painkilling stuff.
But really, the process isn’t too bad and it’s over quite quickly, and you feel perfectly normal afterwards Good luck.

[FrancesParticipant]

Signed, and posted on Facebook and twitter

[FrancesParticipant]

Apparantly I did have a bleed in the eye, which is caused by pressure and is a result of mm medication, but it seems to have cleared up spontaneously. But my main problem is a macular hole ( a tear in the retina, which they say isn’t caused by mm – do I believe them? Anyway it entails an operation, after which I have to lie on my stomach for a week. Wish me luck.
Sorry to hear about your problems, Anthony. As you say, it’s often the side-effects from mm that cause the problems. It is a nasty beast!

[FrancesParticipant]

Dear Martin,
I’m 70, and was diagnosed with mm last year. I thought I’d got away without back pain, but in March what felt like a grumbling muscle suddenly got painful, and they decided I had three stress fractures in the lower spine. I found it quite hard to get notice taken of this at first but then attention kicked in, and since then my pain relief regime has been very good. I have a morphine patch and Oromorph to take if I need it – I hardly ever do. I was prescribed 8 paracetemol a day in four doses( I am cutting this down to half now) – have had two doses of radiotherapy, which doesn’t seem to work at first but then suddenly kicks in, and I am taking zometa for bone strengthening. At first my condition was really painful; though I think less bad than yours – I didn’t need bed rest – I was hobbling around with a stick, and kept having to stop. I am now much much better. I still find some hings painful – sitting in a hard chair for instance, and sitting through a film can be uncomfortable, or taking long walks. My consultant informs me that the fractures should heal, but it will take time, and because of the myeloma should take longer than if I was normal. But I am so much better than I was a while back, and I do hope the same happens to you. Good luck!

[FrancesParticipant]

Thank you for all comments. I see the eye surgeon next week, and I must confess to feeling uneasy. I can cope with the chemo rubbish, but don’t like the thought of someone messing with my eyes! Wish me luck.

[FrancesParticipant]

Thank you, Michelle and Rebecca. I think I shall sneak into the chemist and find a very gentle temporary colorant shampoo. My hair is very brittle and absorbent at the best of times, so I shan’t need to leave it on very long. Important to try and look good while all this rubbish is going on!

[FrancesParticipant]

Do they send the results to your GP? You might be able to sidestep the process that way if they do. My consultant often forgets to send me the results.

[FrancesParticipant]

Thank you for all your helpful comments – I went to my GP who put me on strong painkillers so at present I’m managing the condition, though I guess I can’t stay on them for very long. I had an x ray a couple of weeks ago, so I reckon I’m fairly up to date, and I’m about to have zometa. I’ll see how al this goes, and then start making a fuss if nothing works. My hope is that something that flared up pretty suddenly can also flare down! It’s just so strange getting used to this new invalid’s body which doesn’t react in any of the ways I expect it to; this is early days for me so I hope to work it out all soon. Meanwhile, I’m sorry to hear your stories of pain, but it’s helpful to know I’m not alone.

[FrancesParticipant]

Thank you Andy. That was a very helpful and reassuring post

[FrancesParticipant]

Please can you tell us a little more about what these drugs are that we’re not being allowed access to? I’m currently in a somewhat stressful limbo of knowing that I’ll have to start chemo very soon, but with no idea of how it’s going to affect me, and precisely what the drugs involved will be. But I do need to feel that my haematologist is going to do what’s best for me.

[Author]

Posts