Can I just say Thankyou so much for all the valuable information everyone has taken the time to give me .Ive not been on for a while as I’ve been feeling a bit off and depressed .Ive had my stem cell transplant this week and I have a provisional date for the transplant of 17th October .Ive been told to take in an overnight bag with me as I will be having a Hickman line fitted on that date but may not be able to stay in as there may not be a bed available for up to a couple of weeks afterwards . We have a two and a half hour train journey each way from where we live to Kings so I’m not really looking forward to being sent home 🙁 and my poor husband will have a five hour round trip to visit me ! However I’ve been reassured that Kings is probably the best place in the country to have a transplant . I just want to get it over with and get back to normal .
Dean I hope you’ve been able to get the information you wanted from these replies ? I’m sorry I haven’t sent you my phone number but I’m hard of hearing and don’t really like speaking on the phone as I struggle to understand the person on the other end ! You are welcome to private message me if that helps at all ? The procedure for harvesting the stem cells is ok and I kept falling asleep 😂 So it’s nothing to worry about . I hope all goes well for you too xx
Hi Dean
i don’t have an exact date for the transplant yet but my harvest is on 12/13th September and I was told I would be taken in for the transplant within 6 weeks of that so I’m guessing October ? I’m supposed to go to a pre transplant information session at kings but I live in Eastbourne so find the journey rather arduous and don’t really want to go . Have you been to one ? I’m not sure it will be of enough value to me to make the journey as I’m feeling rather ‘snowed under’ with information at the moment .
Regards
Sarah
Hi Lorraine ,I was also diagnosed in January and I’m just on the last week of my first cycle of VCD . So far I’ve been lucky as the only side effects seem to be extreme tiredness after a weekend of struggling to sleep on the steroids ! Oh and a weird obsession with marmite lol .I hope when you return to the treatment you liver stays stable so you can continue with it . I don’t know what your readings mean either ,I just know my paraprotein level was 33 when I Started treatment .My bloods have remained good throughout and my haemaglobin levels have gone up slightly as I was a little anaemic .Keep us posted as to how you’re getting on ? I’m 57 by the way xxx
I’m on velcade as they thought thalidomide would make the diabetic neuropathy I already have,worse 😟 I’ve only had one injection so far so much to early to tell if it’s doing anything .I was lucky enough to be diagnosed at a very early stage ,I have no symptoms at all ,my kidney function is good and no bone damage as far as we know although the my lumbar spine is showing signs of severe degeneration ,got to have an MRI to see if it’s arthritis or myeloma bone disease. I do have arthritis all over the place so I suspect it is that !
So disappointing for your SCT to only last 14 months ,such a horrible thing to go through for such a short remission 😕 .Can you have another SCT Peter ? May be worth it if you can ,maybe with a follow up of drug therapy ? Certainly worth discussing with your consultant ?
My consultant told me that at the stage I’m at some people refuse treatment u til they are poorly ? I can’t understand that ? I want to minimize any damage to my body while I can !
Take Care Peter and keep in touch xxx
Never give up Peter,there are so many treatments to try ! I’ve only just started my journey on treatment but really want to live as long as I can ,who knows they may even find a cure ? I’m sure your consultant will suggest an alternative for you .Will be thinking about you and hoping you soon get into remission again .
Love and Best Wishes
Sarah
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
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 😊
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 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 ?
Thanks Faye,I really hope everything goes well for your sister too . I should find out what they are going to do with me next week sometime so I will post on here when I know xx
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
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
Hi
I have the same decision to make and have decided I will go with the trial.It is a trial between a few standard treatments to see which ones work best .The meds are all tried ,tested and approved and as part of the trial you could well be put on the standard treatment anyway ? I hope your sister is coping ok ,it’s such a shock isn’t it ? She is very young too xx
Kind Regards
Sarah x
Thankyou Ann,my consultant told me the prognosis is years and because of advances in treatment they may even find a cure ? I’m so grateful to you and Michele as you’ve both eased my mind a great deal . I’d never heard of Myeloma until I was told I might have it ! Once you are in remission do you feel ‘normal’ or will there always be signs of the myeloma ?
Hi Michelle,nice to meet you too,I think you have just described exactly how I’m feeling at the moment . At least I’m not alone 😊 .I was told I may have Myeloma 5 days before Christmas ,had a bone marrow biopsy on 29th December and then was told I did have myeloma last Friday ,so I’ve spent the last month worrying and like you say,now thinking I’m going to die 😢 .Hopefully I will improve when I start treatment .Thankyou for your kind words xxx
