Latest update – Have had a few goodish in part days this last week. Still fatigued with more nausea than when on chemo, still feeling shit far too often and occasionally a bit fed up of being ill.
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 well.
But I ent ded, so all good.
My best to everyone
Taff
Hi Claires,
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.
Quick update –
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.
The start of my diagnosis began when I collapsed at the wheel. Luckily, I was parked at the time – I was a taxi driver. Anaemia. Been prone to it for years but hadn’t realised my count was so low.
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 convenience.
If you have PN, or any other condition that may affect your driving, you know you’ve got to report it, so do so. (This is not aimed at anybody in particular)
My sympathies lie with those suffering with myeloma; irresponsible behaviour gets none.
Thanks David.
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 fortunate compared to some posters. I wwish everybody well and will continue to post about my journey, in the hope that others might get something out of them.
My best to all
Regards
Taff
Well today I finished my 6th cycle of CDT and visited my consultant. Paraproteins have dropped so low that they can’t be given a number – I’m thus officially in remission; yahoo!
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 far is that it’s necrotic; basically a mass full of dead ‘stuff’, that nobody’s seen the like of before. Have to wait and see what they decide should be done about it. Not stressed over it as I’ve had it for about 16 years.
Oddly, I’ve been in more pain today than for the last couple of months; rib pain does not respond to morphine, but it’s bearable, and hip pain rather than stiffness. Morphine turned initial extreme hip pain to stiffness.
But
I ent ded.
Hi David, Simon,
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 thing for me and a major reason why I don’t think I’d cope with STC.
Bit of a chest infection last week which I managed to get rid of with the antibiotics in my COPD rescue pack – didn’t need to go to hozzy.
Had the biopsy on the pelvic mass yesterday. Almost certainly not cancer or any sort of tumour as there was no blood at all. Appears to be some sort of solidified pus, nobody’s seen anything like it before, so just have to wait for the results, hopefully next week.
Having cancer and knowing it’s going to probably come back is not something that plays on my mind. I’ve got a really, really bad memory, long and short term and a general inability to ponder for more than a minute or two, so I’m spared that. Can’t get away though from the daily grind of how I’m actually feeling, which will no doubt soon change as and when I come off chemo and start getting a bit stronger. At least I’ve got a handle on what pain relief I require for the future, which is a plus, having suffered from chronic pain for 20 plus years.
All good and I ent ded yet.
Regards to all
Taff
Sorry for the delay in responding David, haven’t visited here for a while.
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 radiotherapy on left pelvis.
Because I’ve stopped Fragmin I’m paranoid about getting a blood clot, especially as I’m not as mobile as I should be. Although I’ve not got any bed/pressure sores, I have got a sore bum and my feet and legs are swollen for most of the time.
Due to the sore bum I’ve tried to sleep more horizontally the past few nights and, due to lying on one side mostly, I’ve got lots of rib pain. A short walk just now and typing this standing up and I’ve now got back and hip pain as well. Such is life.
Have decided not to go for transplant and my doc seemed ok with that. I’m not sure I’d cope with feeling iller than I’ve been already.
Anyway, my best to all
Taff
Hi All, a quick update –
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 effectively switched off.
I’ve been fairly immobile for the last 3/4 months and now’s the time to try and strengthen the bones by trying to walk about a bit every day and start getting out and about. I’ve gone from being unable to move unaided to pottering about with a wheely frame.
After chemo finishes in 6 weeks, I’ve got radiotherapy on a fist-sized myeloma in the left pelvis and I’ve got a tennis ball-size mass in my pelvis that is being investigated. Possibly some form of scar tissue from a rectopexy in 2002. I also had a prophylactic nail put in my left femur because it was about to break which has worked well.
I’ve been more or less pain free thanks to prodigious amounts of morphine, tablet and oral, although there is breakthrough pain now and then. Pain has changed to stiffness and a feeling of being permanently uncomfortable. Am unable to sleep in bed due to acid reflux and use my reclining chair.
My appetite is up and down and everything tastes wrong or horrible except for weetabix and rice pudding. Sometimes it’s difficult to swallow.
In general then, although I feel like shit, things are looking positive thus far and best of all –
I ent ded yet.
Best Regards to everyone
Taff
My condolences MM, to you and your family.
Hi David,
Could be that the MRI scan, x-rays and bloods give sufficient for diagnosis and the biopsy adds detail such as the specific type or stage.
On the bright side I got an information pack today that my daughter asked for. From this very site. I think it’ll take all week to read it all.
I’d already started a diary, but the one delivered is very comprehensive and well laid out.
What I have noticed is that I’ve had some of the side effects of myeloma or it’s treatment as part of my existing medical problems.
Had a day of low mood the other day with no apparent reason for it. Usually only feel low for a few seconds and it’s gone. Very strange.
All the best
Taff
Hi All,
Just had the bone marrow biopsy; fairly painless except for the last bit. Results apparently take two to three weeks. However, next consult with haematologist is next Monday.
Seems odd. Bone biopsy is supposed to confirm or not but the nurse who did the test seemed to suggest it was just an added extra.
Just a matter of waiting, I suppose, which has been the hardest part so far.
My best to all
Taff.
Hi Tony,
Cheers for that, hope you keep on keeping on.
And David, thanks for your input as well, sorry I’m a bit late answering your post.
Hi All,
Just been perusing the net while having a conversation with daughter. She’s annoyed that official confirmation won’t be until after biopsy and scan. I’m going along with assuming it’s confirmed and anything less will be a bonus.
She’s also annoyed that I was originally told by phone, as in, ‘One of your blood test results is high. In fact it’s very high, have you heard of multiple myeloma? No? It’s a sort of blood cancer.’
Apparently lots of people experience anger, fear and suchlike. Me, I said ‘Thanks for letting me know straight away’.
I get the feeling I must be a bit strange for taking it calmly and asking what the next step was.
Anybody like to share how they got told and how they felt?
Thanks David.
Have just had my initial consultation; the doc says although the blood and urine tests so far point to myeloma, it’s can’t be properly confirmed yet due to my other ailments. But he thinks it is myeloma.
Got the bone marrow biopsy next Monday but may get it brought forward to Thursday and should be called asap for MRI.
Keep on keeping on
Taff
