I know and understand how you feel, there's times when you would just like to go back to normal, unfortunately we can't . It does get easier to cope with the more you know about it. Sadly the bone pain is a constant reminder but if you can get that under control you will feel loads better. I have not been to a mm conference before so it will be interesting I'm sure. There really is a lot that can be done at each stage. Do speak to your consultant he should be able to tell you just what's going on, why your on what treatment and what he proposes or speak to Ellen the myeloma nurse at Meyloma UK. I told my kids that mm wasn't cure able but that it was treatable so that gave them hope. Not telling your boys that it is not curable may well be the right thing to do, you know them best and they have been through a lot. I would caution that they could easily find out if they research it, will they be upset at you not telling them?
What damage to your bones do you have? I have two damaged vertebrae and a lot of pain in my ribs and pelvis, think I've said before its fairly well controlled with slow release morphine.
Will go for now, will let you know how the conference goes-staying in a hotel by myself the night before, just hope I don't sleep in!
I am useless at ticking boxes which I tend to see as an unnecessary complication. I fill my 7 day boxes up with tablets to be taken every Monday morning, Black medications & Pink pain killers.
I look at the box if the pill is still there I have not taken it – end of story, no question of "did I take it and not tick the box" etc…
It was the mental problem I had with the boxes at the start I think – I saw them as something old people did 🙁 Once I cleared that hurdle I was on a home run. Never forget a tablet. The other good tip I picked up on here was Toms' idea of filling 6 x 500ml bottles up each morning and putting them somewhere you could not miss them to be drunk that day; always now drink my 3 Litres(6 pints) a day.
Kindest regards – vasbyte
I had an MRI scan a year after my vertebrae were crushed. The consultant radiologist said afterwards that surgical interventions are only useful during the first 10 weeks after fracture and that creates difficulties with MM patients because that is usually just the time during which chemotherapy is being initiated and no surgeon is keen on surgery at that stage. The only advice that I got was to do back exercises to help my back muscles conform to the new shape of my spine.
Why did they wait a year before the MRI ? I did see a consultant in Taunton, who said I could have the "cement treatment" although she was not sure how it would effect my treatment for cancer. I have now been told that I can't have it at present, but to wait until the MM is well under control, which I guess is right when you think about it.
I am going to see yet another consultant on Tuesday about radiotherapy to my back/vertebrae to help with the pain, have you had this done?
It took a year of asking to get the MRI. Haematologist would not refer me until I had had the CTD as he said that the pain would probably get better and it did, but not completely. As it did not go away completely he referred me to the Manchester Royal Infirmary but then the transplant intervened. Then I got to the Infirmary consultant appointment but it then took 3 months to get the scan – good old NHS! Net result it was all too late to do anything with my back except attempt stretching exercises. It is really disappointing how the time to get things done stretches out.
I do hope things move quicker for you.
As I am new to all this, I am not really in the position to comment, but I would have thought they would have wanted to see which bones were causing you pain, so the MRI would have been a good thing, surely…….
I have to say so far my appointments have come though fast, but I guess that is because I live in good old Somerset.
You would have thought having MM they would rush our appointments though as we are on borrowed time as it is.
Did you have CDT all at the same time? My consultant has said that is what he is going to give me, but up until now I have only had D&T, no chemo as yet, I am on nearly finished my third cycle
There is just so much to take in when you are first diagnosed. As many others have said there are so many pills and injections that a written checklist of some sort is essential. I think Myeloma UK have something in that line.
I would not be able to comment about missing out on the cyclophosphamide at the beginning. I am sure there will be a good reason.
As regards a scan I just had a full skeletal X-ray on diagnosis at the request of the haematology consultant. He saw no point in an MRI. It was a year later when I finally got to see a consultant who deals with bone weakness caused by osteoporosis or MM that an MRI was prescribed.
Over the past year I have learned from this discussion forum that there is no uniformity in treatment but in large part this is probably due to the individuality of the disease. One of the benefits of this forum is that it will equip you with a good many questions to ask your consultant and this will hopefully help you build up confidence in him/her. Don't forget to write the questions down though because my mind, at least, goes blank at the time. I also found it essential to have my wife with me as many words went in one ear and out the other.
Sorry to meet you this way way-it takes a while to sink in but I hope it encourages you to know that many of us have enjoyed some success in battling this stupid cancer.I myself was diagnosed in 2005 and although I'm not as active active and sporty as I was I'm still kicking!
This is a great site with lots of nice people who are happy to share their experiences experiences or just listen.
Good luck with the chemo (it was nowhere near as bad as I had imagined so don't listen to horror stories please.
Best wishes Carol XXXXXX
Sorry in delay in reply :-0
I think my wait was because my Dr missed me and sent another patient when it should have been me (he got told off though 😛 )then I had to wait for a bed to be free at Hull, as you know it all worked and am still kicking though not as hard 😎
God Luck with all yours.
Love Tom Onwards and upwards xx
Thanks for your feedback.
That's good to hear things have been ok for you since 2005, it gives us hope.
I had radiotherapy yesterday on my vertebrae, which is aching a lot now. They did say this was to be expected.
It appears that I am not having any chemo now until I am ready for SCT. My PP was 34.4 when I was first diagnosed and now three months later it is down to 8, the consultant is really pleased with me.
Do you work Carol? I have asked my work if it is ok to go back to work on 1st July,(part time) I have not got a reply yet .
No, I don't work now which felt very strange at first but the treatments of the last few years have sometimes felt almost like having a . Job !
Unfortunately after all the preparations over six months they have abandoned any more at temps at stem cell collection due to low cell counts so it's back to velcade for a few months to keep the pp down and hope it stays away for a while!
Hope your back eases of soon and try to rest it (boring I know)'
Love Carol xxx
I was interested to read your clever trick with the water. No one has, ever mentioned that I should drink a lot but perhaps I should start. Thinking about it I probably do drink enough but it's tea and coffee with the odd fresh orange juice – will this suffice do you think? What is the general rule please?
Love Carol XXXXXX
Ps had a thrombosis last week after they took my vas Cath out two weeks before (well they think that's what caused it anyway) so perhaps drinking would help thin my blood a bit more as I am on daily injections at present.
You will hear lots of "discussions" about fluids. Personally I ignore the "discussions". 😎
The base line is that you should drink between 4 and 6 pints of water every day. I try for 6 pints a day but sometimes when I am visiting friends etc… it is can become difficult so I allow it to slip to 4 pints, BUT, never less.
Hope this helps
Kindest regards – vasbyte
Dear David and Anne
Re the fluids, we need to keep our bodies flushed as kidney function maintenance is paramout. We excrete about 2 pints a day just breathing but the body is clever and it keeps what it needs and so we have to flush it to remove light chain deposits by peeing regularly too. There are a lot of myths about water versus other fluids, all count, even tea and coffee and especially beer I understand! Good idea not to have too much sugar in the fruit drinks. So for the water haters out there, there are other tipples. As long as it all adds up to 6 pints a day.
Ps I keep the water bottle line up, it is an easy ready reckoner but I keep a line of empty tea cups too and stop when I get to the end:-)
Hi water lovers 😀
Yes I like to do three Ltr a day of just water, add to that the coffee I take and that is then substituted with Vodka and Beer 😀 , the vodka has lemonade in it and that is Diet Lemonade He he.
Keep well you all
Love Tom Onwards and upwards xxx
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