Hi Dusk

Can I ask you a nice straight forward question????

Have you started treatment yet??????

You have one thing wrong about me dusk,I am a desperate vulnerable woman,who feels like screaming at the moon,often drive along the road with tears streaming down,for things I’ve loved and lost,just like most people feel on here,that’s how we have…[Read more]

Hi Graham

I would be lost without having my husbands blood results,they give so much information to his general condition,and show improvements or any condition that needs to be watched.!!!
I also have results from any scans that have been done,I think personally it saves the consultants time,and you can ask questions on things you do not…[Read more]

Hi Gill

Lovely to hear from you,I know you are coping!!,you made me laugh about your adventures to France,even if we do not like it life goes on,people seem to think it should get better after a short time,the first year is a challenge,the second year reality sets in,but saying that you seem to be facing it all head on,my admiration of how well…[Read more]

Hi Dick

Try to think of it as major blood surgery!!! Give yourself three months,then think the next three months will see you responding well,3 weeks!!! What the hell do you expect!!! Lol.

Seriously some people take a long time others don,t.i think guts and bowels are the last to improve,you have age on your side,so don,t despair make the most…[Read more]

Hi Dusk

I knew you would come in on this one. Lol

May I suggest you go into the Myeloma Beacon and read opinions a man called Arnie who is a MD with Myeloma,who is nearing the end of his roller coaster ride,well worth a read,he puts the emphasis on what treatment that is available,plus gives his opinion on trials,it’s about drugs and not him,

I…[Read more]

Hi David

Slims platelets never reached dizzy heights after his SCT,then the myeloma came back after 6 months ,so he went on CDR,,at the time no choice part of NICE controls with drugs,I was against this at the time because Revilimid is a cousin of thalidomide and during his 6 cycles on thalidomide his Myeloma increased to 80 percent in bones plus…[Read more]

hI luciano ,
I hope you went skiing;smouldering myeloma per se should not increase your risk of broken bones unless a dexascan shows osteoporosis or whole body mri confirms bony lesions.I Have being skiing for the past 5yrs with SMM and osteopenia both declared to my travel insurance, with smm not covered and taken advice for a national…[Read more]

hi Julie
My smouldering myeloma was found at (?routine?) blood test for monitoring blood pressure treatment and fasting lipids/blood sugar which also included a liver function test(LFTS).this showed a very high globulin and lead to follow up tests on the same sample (immunoelectrophoresis and immune fixation which are not routine at all !!!).The…[Read more]

Hi Angela

We have BUPA and my husband was diagnosed 2006. His consultant did not take private patients and although I tried to encourage Frank to go the private route, (thought he would have more individual attention) he decided to stay with NHS. Although I have had some gripes, Frank is very happy with the route he took and when he has needed…[Read more]

Hi Julie

My husband is on fourth line treatment CDV. It’s exactly 3 years since he was diagnosed,I often wonder if he had not had a SCT would he have had a longer remission!!!!!

So I suppose we all do what ifs,hindsight is a wonderful thing,just wish I had the gift.

The problem is often the type of Myeloma and how aggressive it is,plus the fact…[Read more]

Hello Kay,

Welcome to the site but sorry you have had to join us. The positive thing is you are being monitored and your doctors will being keeping an eye on your blood results and any new symptoms, make sure you tell them about the pain in your sternum.

How to avoid ulcers from the worry is something I am still trying to work out myself :-).…[Read more]

Hi Vicki and Colin

I don’t understand what All clear are up to. That’s who we got insured with. Frank did it all, I, thankfully was not involved. I know they were sticky on “do you take powerful painkillers”. Frank doesn’t. His consultant wrote a letter saying about SCT and about tests PET scan and said “no detectable myeloma cells”.he doesn’t…[Read more]

Hi Hilitli

Sorry to hear about your Mom,I can’t add to this although I am on the Velcade injection once per week but have just finished my first four week cycle do am sure you understand for me IRS early day.

Good luck to your Mum on her long journey, I hope it’s a smooth one.

Tom onwards and upwards x

Hi Jean

Well we have just passed three years,in this Myeloma Bubble,and the Myeloma seems relentless if I clocked up how many hours have been spent driving,waiting for treatment and every thing that goes with it,I am sure it would add up to a good portion of those three years,yet it’s time we are trying to buy,a bit like Dai trying to get to…[Read more]

Hi Wendy

Hi Wendy

I was diagnosed with smouldering myeloma in August 2012 so know exactly how you are feeling. After reading about it, talking to the nurses on this site, joining our local support group and attending information days I gradually accepted the diagnosis and just got on with life. This took some time and it was hard talking to…[Read more]

Hey Andy
The drink of a Sunday is the norm for me lol.
Pleased you say the bloods are good am hoping my consultant says same when I see him ???
Keep well my friend and enjoy those weekend pints.

Love to you both.

Tom onwards and upwards x

Hi Carol

Before Frank had SCT our travel insurance was through Columbus. They were good. After transplant we got a yearly policy with All Clear. Excellent price although it did not include USA

Jean

Hi Eve

Glad that Slimis getting treatment. Hope he gets something good out of it. I know more and more treatments are coming on line but let’s hope Nice Get their finger out soon. I play scrabble on my iPad. “Words with friends” I play with Elaine, Toms wife. To be honest it acts as a relief. I look forward to our games. I’m glad to hear that…[Read more]

Hi Trigger

Welcome to you and your Mum!

I’m another one who didn’t go for a SCT by my own choice. I didn’t want to gamble quality of life for what could have been a short remission. About 14 months after diagnosis I had six lots of CDT and fortunately got into full remission (now 18 months and counting.)

It is a very personal decision about…[Read more]

Hi Michelle

Delighted for you. Long may it last.

Best wishes for the future.

Mavis