I’ve been on monthly pamidronate rather than zometa, finished chemo Feb 2016. I’ve never thought I had any effects from it.

While on chemo, CTD, I used to have moments of weepiness that lasted seconds, for no apparent reason, so I assumed they were med-related.

I’ve had these occasional moments from time to time since stopping chemo…[Read more]

It is indeed a bit of a shock and we can indeed go from apparently healthy to falling apart very quickly.

I suggest that your doc is definitely giving you the gospel; when I was first diagnosed, the weight of my leg with my foot off the ground, was sufficient to cause a fracture to my hip bone, luckily not a…[Read more]

I had a prophylactic nail put in my left femur, as it was about to break. At this time, the weight of my leg was enough to fracture my pelvis, such was the state of it due to a large plasmacytoma.

The morning after my op, I was asked to get out of bed and to see if I could weight bear. I was absolutely stunned to find that not only…[Read more]

‘Fraid I’m not going to be of much help as my plasmacytoma was in my pelvis. About 3 months after mine finished I got colitis which turned to sepsis. Emergency life-saving op to remove sigmoid colon and now I have 2 bags.

So RT side effects can be mild or severe and can occur years afterwards.

Best o’ luck

Taff

‘Fraid I’m not going to be of much help as my plasmacytoma was in my pelvis. About 3 months after mine finished I got colitis which turned to sepsis. Emergency life-saving op to remove sigmoid colon and now I have 2 bags.

So RT side effects can be mild or sever and can occur years afterwards.

Best o’ luck

Taff

I was also lucky in that, had I had a transplant, I wouldn’t have survived the sepsis that developed from radiation colitis.

I wish you well for yours.

Best Regards

Taff

Firstly, had I taken it and my condition changed for the better or worse, nobody would have had any idea whether it was the cannabis oil or the medication that…[Read more]

Again, thanks for your post,

Regards

Taff

All these stoma problems keep knocking me back to square one and I remain very weak and unable to eat properly.

But I still ent ded, which is nice.

Regards

Taff

Regards

Taff

Stoma has been consistently shrinking, to the point where scar tissue had made it retract completely and the stoma was healing up. Had it redone today and am feeling a bit tender t the…[Read more]

Regards

Taff

Regardes

Taff

Luckily, I’m one of the few who achieved complete remission with just the induction regime, CTD.

Radiotherapy caused colitis and sepsis – had I had a…[Read more]

Ironically, if I’d have had a stem cell transplant, I wouldn’t have survived the radiation colitis and subsequent sepsis.

I’m struggling to eat enough, with having altered taste and a restricted diet due to the colostomy. And…[Read more]

I had the calcium, which had the consistency of toothpaste, sucked out during…[Read more]

I had the calcium, which had the consistency of toothpaste, sucked out during ultrasound and was then injected…[Read more]

I too was on CTD and took 40 mg dex days 1-4 and 12-15. I didn’t get…[Read more]

I’ve an alternative theory that I haven’t spoken to the docs about yet but will do so in the next few weeks.

Firstly, I would have thought that RT damage to cells would be noticeable and would be definitive as a diagnosis. Not sure if that’s presently the case.

Secondly, thanks to this website, I recorded my original diagnosis and…[Read more]

My bowel habit changed from severe constipation that I’d had for about 16 years, to going daily and being somewhat loose, with the…[Read more]

You might find that CTD gives you a good response again and maybe an even longer remission. It seems myeloma is so individual that there’s just no telling.

Looks like it’s the same decision as the first time and there’s no way of saying whether sct would be of benefit at all, or if it would give you a similar remission or a…[Read more]

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.

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.…[Read more]

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…[Read more]

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,…[Read more]

What they did was give me a local anaesthetic then using ultrasound, aspirate the calcium, which has a consistency of toothpaste at this stage,…[Read more]

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…[Read more]

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…[Read more]

Scans before and after radio showed a shrinking plasmacytoma and slight regrowth of pelvic bone so things appear to be on the up. Still…[Read more]

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…[Read more]

Regards

Taff

Start 10 daily blasts of radiotherapy on Thursday on my pelvis, so expecting to be even more fatigued for a while. Possible bowel side effects as…[Read more]

How much morphine is he on and what kind?

I started on 2 tabs of slow release per day and 6 doses of oramorph. Was well spaced out but the pain became manageable and changed to stiffness. There was some breakthrough pain when in certain positions but it wasn’t too bad.

Seem to have gone backwards since stopping chemo. Serious, continuous fatigue, upset stomach with some occasional continence issues, altered or no appetite, more frequent nausea, odd sleep patterns and physically weaker.

Have first consultation for radiotherapy on Monday 20th.

Ent ded though, which is nice.

Thing is, there’s no specific level that’ll cause a blackout, so I decided there and then that I’ll never drive again. I’ll not endanger others for my…[Read more]

Have to say I’ve had more pain since stopping chemo and I’m permanently exhausted but things are changing daily. Swollen feet have gone down somewhat today but legs and feet are very tender. Added to which I’ve felt more nauseous in the last few days than in the whole previous 4 months.

I realise though that I’ve been comparatively…[Read more]

Still to have radiotherapy on pelvis and ribs at the least, so awaiting first consult on that.

Large mass in pelvis was biopsied last week and all that can be said thus…[Read more]

Didn’t mean to sound downbeat, more of an info post really. As I come to the end of my 6 cycle induction, I have to admit it’s become a bit wearing, constant tiredness, difficulty with eating, fat legs etc but I’ve only felt nauseous about 3 or 4 times which was quickly addressed with meds. Feeling sick is absolutely the worst…[Read more]

Day 10 of 6th cycle now, finish on 22nd Feb. Monday I’ve got an ultrasound and probable biopsy of the mass in my pelvis – should have had it already but it was cancelled because I needed to stop Fragmin for 4 days and hadn’t done so.

Depending on the outcome I’ve then got…[Read more]

Finished fourth cycle of CTD today and had a consult yesterday. Apparently all my bloods are looking spiffing and although no figures were available for paraproteins, overall protein level had come way down and thus the paraproteins will have done, meaning that I’ve responded well so far and the myeloma cells have been…[Read more]