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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 Taff
Not sure what to say, but just wanted to say you are not alone and that helps is there in different froms. Life is not easy but things could also be much worse. There is always the chance your health problems can improve and you are being looked after by some of the best people in the world.
I dont know about you, but I have a fight mentally to take it all in and sometimes struggle to stop the questions etc in my head. I just try and think of one positive thing a day and focus on that or I watch a Rugby League game. I analyse it and stops me thinking about Myeloma or my problems for a while. Maybe something similar helps you and others.
Keep fighting mate like the rest of us. You are never alone
Simon
Hi Taff
Sorry to hear that you are having a rough time at the moment. This cold winter weather we having is probably not helping, but the snowdrops are coming out so spring and some warm sunshine are not too far away.
Hope that things start to improve once this round of treatment is finished.
I was at a talk last week given by one of our local Macmillan GPs who said that there seemed to be a lot of evidence that trying to keep fit,well and active pays dividends in improved health and well being. Not easy I know when you are not feeling well. It seems like chicken and egg in some ways, if this makes sense.
As Simon says above, your not alone and there is plenty of help out there to provide support when things aren’t going too well.
As an aside, our local support group here in West Lancs and Sefton has got off to a good start this year. I know that patients and carers find it helpful to come along and chat over a cuppa about how they are doing.
Hope this helps.
David
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
Mate just Post away. Get them feelings and thoughts out. Dont worry about it being negative. If it is, then we can try and support you etc.
I just take one day at a time. I am sure you are like me. The positive is you have the pain under control- thats better than me. Lol! Another good thing is you seem to be mentally in a good place and not worrying too much about the future. I think thats a massive thing and gives you strength to fight the cancer in a better way.
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 Taff
Good to hear that you have finished the CTD and have had a great response. It can be a slog towards the end of cycle 6, but as they say no gain without pain!
For me, quality of life started to improve a lot once I had finished the CTD and the side effects of the treatment start to wear off.
Good luck and keep well.
David
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
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.
Hi Taff
Yes it can feel like a rollcoaster at times, up one day and down the next. Hopefully for you there will be more of the good days.
Fatigue seems to be a common side effect of the treatment. There is plenty of advice out there on how best to manage. Here is a link to one of Myeloma UK’s infoguides or maybe speak to one of the nurses on the info line.
Hope this helps.
David S
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 Taff
Hope the radiotherapy goes OK for you. I had it on my spine. Apart from all the travelling and hanging around in hospital which you have to accept as part of the job, it went well. Ended up with a nice square shape sun tan for a few weeks on my back, but this soon faded. I seem to recall that calomine lotion held to ease the itching.
Good luck then with the next round of treatment.
David S
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
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.
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.
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