[taffdParticipant]

Did you have CTD as your initial treatment before your first sct?

• This reply was modified 7 years, 5 months ago by  taffd.

[taffdParticipant]

Can’t offer any advice, can only say that after 4 cycles of CTD I said that I didn’t fancy a sct, as I didn’t think I’d be able to handle it. It was never mentioned again.

I also wondered if it was worth it, requiring maybe up to a year to recover to get a year’s extension of life expectancy.

Best Regards, whatever you decide.

[taffdParticipant]

Quick update –

Had my 3 month post-treatment review today: bloods magnificent, apparently I achieved a complete response. Still receiving monthly biphosphonates.

Feeling much better generally, though still with altered taste, variable appetite, fairly mild neuropathy. Also, still weak but getting stronger. Shoulder ok now, got full movement. Background pain in back and pelvis/thighs but well controlled.

And I ent ded.

Best regards to all

[taffdParticipant]

Hi sabs,

It’s early days yet and your man’s on a trial, so it’s difficult to say what might happen and when. The fact that MM is very individual also has to be taken into consideration.

Just after diagnosis I became very ill, unable to do anything for myself. Went from driving a taxi to being unable to drive. Virtually every bone was affected and I was in a lot of pain. I used enough morphine to counter the pain and that in itself was a revelation – virtually pain free after 30 odd years. I had a huge plasmacytoma in my pelvis that destroyed a lot of the bone. But it’s been treated and shrunk and there’s been some bone regrowth. Other areas that were painful are now not and I reckon that my bones in general, are stronger than they were. Still not perfect but much better.

But everything’s changed. Don’t think I’ll ever work again. My wife’s uncle, who also has MM, has gone back to work though, part time.

Life changes but it’s still life. And it’s what you make of it. I’m older than your man and have no ambitions to fulfil. I’m accepting of things that might perplex others. I take pleasure in little things – a smile, a sight of a grandchild, my children being in a good mood.

All I can say really is that things should get better for you and your man but it might take a few months.

All the best

Taff

[taffdParticipant]

Hi sabs,

I’d lived with chronic pain for 3o odd years and accepted it as part of life. When I was diagnosed with MM however, my pain became much more severe and I was prescribed morphine – slow release tablets twice a day and oramorph for breakthrough pain, up to 6 times a day.

There are of course side effects to morphine – tiredness, confusion, memory problems etc but I accepted those as I was able to be pain-free most of the time. It took me days to come to terms with the fact that I was allowed to be pain free, I kept having dreams where I thought I had to go back to work immediately, although I was incapable of doing so.

I understand a reluctance to take medication but I think one must accept that one has cancer and choices are somewhat limited.

So personally, I take as much morphine as is needed. I’m in remission now and have been able to reduce the dose as and when, although I had to double it a couple of weeks ago due to calcific tendonitis in my shoulder. I’m now slowly reducing it again and am off oramorph most of the time and only take it when my pain increases due to being out and about.

My opinion? Take drugs. Make the pain go away.

Best Regards

Taff

[taffdParticipant]

Legs crossed is supposed to be a no no due to the higher risk of blood clots.

[taffdParticipant]

Turns out my shoulder/arm pain was due to calcific tendonitis – a build up of calcium in the tendon. Apparently the painful phase is when the body starts to reabsorb the calcium and it can last months.

What they did was give me a local anaesthetic then using ultrasound, aspirate the calcium, which has a consistency of toothpaste at this stage, then inject a corticosteroid.

Pain relief was virtually instantaneous and while I’ll need physio, I already have a lot more movement of the arm. Have been able to stop oramorph.

So, nothing to do with the myeloma, I’m still in remission it seems.

And I ent ded.

[taffdParticipant]

All the best Dave.

[taffdParticipant]

Hiya Jayne,

When I started my treatment I was very ill with a lot of pain and on both sorts of morphine. I found it took a few days to kick in properly and for me to become virtually pain free except when in certain positions.

Don’t worry about becoming addicted to the morphine, take the oral 6 times a day if necessary as well as the slow-release tabs.

If his pain doesn’t decrease a lot within a few days, speak to your team about maybe upping the dose – mine has just been doubled due to a problem with my arm.

Regards

Taff

[taffdParticipant]

Well, for the last 2 or 3 days I’ve been getting severe pain in my left shoulder/upper arm, occasionally right down to the hand and up into my neck and face. 9 on a scale of 1 – 10. Unable to move upper arm.

X-rays today showed no plasmacytoma or bone lesions – will have an MRI in the next few days.

Both slow release and oral morphine doses doubled with possible steroids if it hasn’t calmed in a week. Everybody unsure of cause as yet.

Ent ded though.

[taffdParticipant]

Thanks David and congrats on your Granddaughter. They’re a joy.

[taffdParticipant]

Well I’ve rung the bell – radiotherapy finished on Wednesday. MM treatment is now finished except for monthly bloods/bone strengthening infusions. Follow up appointments with consultants in a couple of weeks.

Scans before and after radio showed a shrinking plasmacytoma and slight regrowth of pelvic bone so things appear to be on the up. Still have a mass of necrotic tissue in my pelvis that needs to be seen to but that’s not MM-related.

Been feeling slightly better for longer each day but still have a fair period of discomfort. Managed 5 hours at a wedding on Thursday – the food was gorgeous and I managed to eat 3 courses. Generally though, I’m surviving on chicken and mushroom soup because my appetite’s still goosed.

But I ent ded.

[taffdParticipant]

Well so much for not catching the lurgy off the wife – temp went up to 38 for a couple of hours the day after my last post and I developed a cough and raw throat. Temp was back down after a sweaty sleep and though I’m still coughing a bit, it’s getting better. I think it was viral rather than an infection. But it seems I’ve fought it off, which is nice.

First 2 days of radio with no probs but I’ve had some pain today. Not only in my pelvis but all over. Back on the slow release morphine as well as oral so it should kick in within a day or two.

Ent ded though.

[taffdParticipant]

Hi David, nice of you to post.

Yep, first day of radio gaga. Transport to hozzy was over an hour late – no sweat. Machine’s software crashed and they had to reboot and start again – no sweat. No transport home, hozzy organised and paid for a taxi – no sweat.

Didn’t feel a thing – sweet.

Overall, have started to have comparatively good days, or at least parts of days. Run out of slow release morphine a couple of days ago and haven’t been able to pick up my new script which has caused some withdrawal symptoms. Unable to sleep, old pre-cancer pains coming back. No sweat, will get it tomorrow and things will be sweet again. Still have numb legs (thighs on the outside).

My good lady has had a chest infection this last week but it hasn’t got me. Considering I’ve got COPD as well, I take this as a sign that I must have a bit of an immune system again – sweet.

How are you doing yourself?

 

Regards

Taff

[taffdParticipant]

Goodly. I’m quite laid back about myself but reading of other peoples’ experiences certainly stirs up the dust around here.

 

Regards

Taff

[Author]

Posts