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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Hello Ann nice to meet you,I’m so glad you’ve come through everything alright and have been in remission for a while,long may it continue 😊 . I just hope I do as well. I have my skeletal survey this afternoon so will know next week if and when I will start treatment . My Paraprotein level is quite high at 28 but everything else is normal so…[Read more]

Hi

Im Sarah,I’m 57 years old and was diagnosed with myeloma last Friday . I’m still feeling shocked and have started to feel scared about what lies ahead for me . My four children and some of my close friends are aware of the diagnoses but until I know more ,I haven’t told the rest of my family . I feel guilty about upsetting them,is this a…[Read more]