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DO. I FEEL. NORMAL !!! now thats a question sarah. ifeel well i do most of tge things i did before my consultants say my cup half full rather than half empty helps. positive attitude goes a long way. got no intention. of. lying down and dying. for a while i hope. but you must all be aware infection is our enemy we need to take care of our selves if. were tired rest and not tottally fight it go with. what the body says but i read posts. from. people who have been on this journey longer than. me. and i know there back on treatment when remmision. comes to a end. there is lots in the pipeline and ive geot stem cells frozen in case i need another transplant. keep well. and warm. im snowed in today xx
Ooh Ann are you up North ? I’m in the south,it’s cold and quite bright here today ! No snow 😊 As for feeling normal I suppose you have to be normal in the first place ,I’m quite sure I’m not 😂 Thankyou for cheering me up,I am beginning to come to terms with things thanks to the people on here ,especially You Ann and Michele xxx
yea sarah im. in a little villiage twelve mile out of newcastle a very snowy villiage today. still im watching rubbish telly in the warm so not all bad . trouble with days like this i get the urge to internet shop. ..HOPE your hospital appointment went ok. itll be a wait and see couple of weeks maybe you look afteryouself and keep us posted on your progress. xx ann
I used to live in North Yorkshire near Richmond ,we had snow up to our thighs there one year ! My hospital appointment was fine thanks ,not too painful 😊 My consultant is out of the hospital this week but has said he will look at the X-rays on Monday then phone me to arrange an appointment . He did mention smouldering myeloma but said that he didn’t think mine was . Hopefully they have picked it up at an early stage so any damage done is minimal ? Take care up there in the snow Ann and I will report back once I know what’s going to happen xxx
Well had the big discussion today with my Consultant,I’ve opted to go on the Myeloma X1 trial and will be told which drugs I’ve been allocated on Monday afternoon when I go for a bone strengthening infusion . My skeletal survey showed severe degeneration of the lumbar spine so I have to have an Mri scan ASAP to see if it is myeloma damage or arthritis.I do suffer with osteoarthritis quite badly so I’m hoping its that .Unfortunately I’ve been removed from the knee replacement waiting list until I’ve had my chemo and SCT so I will be crippled throughout my treatment 😕 I do understand why though 😊 . I should start my treatment at the end of next week ,in a weird way I’m looking forward to starting the fight as I feel n a sort of limbo at the moment .Hopefully I will respond well to the treatment and live a long and fulfilling life still.Im 57 and have four children and two grandchildren at the moment ,I would like to live to see them and any future grandchildren,grow up .Hope everyone else on here is coping alright ?
just to let you know sarah i have rheumatoid arthritis and had two knee replacements at aged 52. but while i was having my treatment and my sct my arthritis. was almost dormNt i had to stop all my arthritic pain relief i was on quite a bit !!! the consultant explained the chemo was so strong it suppressed the arthritis as well as what it was doing to the myeloma. i agree with what you say about just wanting to get on with it the qui c ker you start the. better it will be. I. Like you have three grandchildren a great reason. to kick myeloma in to touch.🍀🍀🍀 good luck to you. keep us posted. xxx annlynne
Thanks for that Annlynn ,hopefully it will have the same effect on my arthritis too,mine is osteo though so not sure f it will be the same ? My knees and hips are badly worn and very painful,I can hardly walk at the moment and I can’t stand for very long either . At my age I find it very frustrating ! I’m not going anywhere for a LNG LNG time though it won’t get me that easily 😊
Well today I have had my first Zometa infusion ,that went well and apart from a few odd pains ,I haven’t felt unwell or had any bad symptoms so far 😊 Hope it stays that way ! I saw the clinical research people about going on the Myeloma X1 trial as I’d agreed to it ,but was told that I’m not sick enough to take part .I will therefore be starting on standard CTD treatment at the end of this week .I. Told that I may need a spreadsheet to keep track of all the meds as I’m diabetic and take a number of meds every day already,I’m not looking forward to that bit 😕 Has anyone had a bad reaction to any of the CTD meds or should it be relatively easy to carry on as normal ? I know that the Dex may well muck up my blood sugars but not sure what will happen with the other meds ? I’m riddled with arthritis and have type 2 diabetes but apart from that I’m normally fairly healthy 😊
Well I started my treatment on Friday and so far so good.No bad effects from the chemo or Velcade just kept awake by the dexamethasone and my blood sugars have rocketed so into gp’s tomorrow to try and get that sorted ! Was going to have thalidomide but was changed to velcade as I already have diabetic neuropathy and there was a danger of thalidomide making that worse .
How is everyone else doing ? Seems to have gone a bit quiet on this discussion ? Hope you are all keeping well and coping with treatment ? Xxx
Hi Sarah.
There is some great advice on here which I hope you are picking up on. MM is very scary but you can read some fantastic stories on here of people putting it behind them. The treatment can be rough and some of us get side effects (I have neuropathy in my feet which can be discomforting) but life does go on. The only reminder for me is the monthly visits for zometer and my quarterly blood checks. Otherwise I try and forget it and just get on with life.
I hope all goes well for you.
Ps. Don’t forget those around you. It can sometimes be harder for them than it is for you as they often feel helpless. Keep talking to them, bring it out in the open so it doesn’t become a taboo subject and laugh at yourself when you can, as others will laugh with you. I find that makes me smile. 😀
Hi I’m 58 and was diagnosed last September with Myeloma after having MGUS for 10 years. I’ve just started my 6th cycle of initial treatment which I’m told will be the last,had expected the 5th to be but there is a back log at the University Hospital of Wales and local hospital don’t know when I will get an appointment for my mobilisation and collection, its the only centre in Wales to provide this procedure and I would like to know how long other people have had to wait between initial treatment and mobilisation. I had been warned that I might have to wait a few months after my mobilisation before my SCT. My goal since diagnosis has been well enough after my SCT to attend my daughters graduation at the end 0f July with treatment being pushed forward this looks unlikely.
Hi
I had my first visit, to hhaematology department yesterday, I was diagnosed from a blood test, I had had server back pain for several weeks and the bone abnormal had shown up in an MRI, they sad I was quiet young at 47 but you all to be of similar age. As I had to use a stick to work and can not drive, I have had tell some people, there hardest thing is that I dont have the answers to there qusetions.
Although it reasuring to see people have manage to get the lifes back to normal I never thought I would mis going to work
Hang in there! It feels like crap when you are diagnosed. I was the same age as you. My back collapsed 2 days before I was going to take my kids on a. Road tour of California. So I had to tell them no holiday plus I had cancer. I was in hospital for 2 weeks as I couldn’t walk with my back, morphine at night to ease the pain. I also had caught salmonella poisoning on a business trip to the Middle East which fortunately the dr’s picked up before it affected me. It did mean that I couldn’t have a back operation for 3- months as salmonella hides in the bones apparently.
It was exactly 1 year today that I had may SCT, I play golf regularly, I have done the first item on my bucket list and all is good. Yes I know it’s going to come back and there is no cure but live for now not the future.
I remember the dark days after being diagnosed and it is dark but start your treatment, know that it works and try and stay as normal as possible. I only had 2 days off work during my treatment (my 2 weeks in hospital was my 2 weeks holiday) and I enjoyed the normality of work and doing normal stuff.
Thebone pkus point of having to use a stick for a few weeks was that I got to the front of the queues in the supermarket!
I hope this helps
bernard
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