HI, as Jeff says contact Macmillan they will help you to complete the necessary paperwork. In my case Leicester CC received the completed form, phoned me and we did the payments over the phone. Cost was £10 for 3 years
Regards
Tony F

Hi jaylo, I reread your first post and realised you are new to myeloma. Sorry to have to welcome you here, it’s a place that we don’t want to be! You must have noticed that there is a wealth of experience here and everyone is willing to help. You may find that there is also a myeloma support group in your area, worth giving Myeloma UK a call. Hope…[Read more]

Hi jaylo, I think that if I was in your shoes I would ask your GP to refer you to the haematology department, I would much prefer to be under the care of a consultant than a GP. Nothing against GP’s mine is a treasure but if anything goes wrong you have immediate access to the treatments available, plus, the consultants and the specialist nurses…[Read more]

Hi cuilmoss, like Annlynn our insurance is via a bank account with the coop, but my guess is that they would not insure you.
Other option would be to check the Myeloma UK info sheet on travel insurance (its on the Myeloma web site) and contact some of the companies listed there. I have heard good reports of a company called nowicantravel.
Best of…[Read more]

Hiya shellbee, I’m no expert on any of the problems that you mentioned, but my diagnosis was determined from a simple blood test that measured the amount of paraprotien in the blood. Why not tell the GP of your worries re myeloma, ask if it is possible that you could have myeloma and ask for one of those blood tests to be done.
Best of luck, would…[Read more]

Hi Lorraine, sorry that you have had to join us. There is a wealth of knowledge on this forum. Im now 71, was diagnosed 4 years ago, was on the Myeloma X1 trial, had a stem cell transplant, was off all drugs for just over 2 years when I relapsed. the first treatment I had was velcade, thalid, and dex. The thalidomide really laid me very low and…[Read more]

Oh yes, I stopped smoking 35 years ago with the aid of hypnosis, I should go for it again.
In the meantime another pre velcade blood test beckons me for tomorrow, ugh!
Tony F

Hiya Geebee, welcome to the club that no one truthfully wants to join!
I was just reading through the posts and noticed you had posted.
I am not smouldering but am going through the whole process, on my last round of drug treatment prior to a second stem cell transplant.
As you probably know they are a great bunch on here, also many of the guys…[Read more]

Hi Sue, that it.
You know if i was in your position I would still go for the myeloma X1 trial regardless of which combination you get.
My pp reading at the start of my myeloma X1 trial was 44 by the end of the trial it was at 7, so that gave the SCT team a real good base at which to start.
If you can grin and bear the needles it will be worth…[Read more]

Hiya suenev.
I am terrified of needles!!!!!
I was diagnosed 4 years ago with mm, I was randomised and put onto the Myeloma X1 trial. It is an all tablet drug trial, I had a monthly blood test to monitor the pp’s etc. Occasionally when attending clinic an additional blood sample was requested for the trials people to monitor progress. I don’t think…[Read more]

Hiya Jan, funny, so many households are similar. We’ve decided that health issues will take priority. At the moment,our number 2 son has recently had a foot operation, so he’s on crutches, his son, age 3 gets every cold imaginable, brother in law has smoldering waldenstroms! daughter is having her first baby early march, but has sticky blood so is…[Read more]

Jules, you seem to be going through a lot of emotions at the moment, no one in our situation should have to do that!
Why not contact Macmillan, they are very sympathetic and very capable of giving good sound advice, particularly how to access financial support and carer support.In the past we have found them to be very helpful.
Wish you all the…[Read more]

Evening Mojo, I was 68 when I had my SCT. I live in Leicestershire and attend the Royal Infirmary. I was in hospital for three weeks during the SCT, Returning home was very strange and unnerving, guess I was institutionalised! My wife is my carer, and although I am very active and do as much as I can for myself I did find that I was reliant upon…[Read more]

Welcome back Andy, you’ve certainly been through the mill, did not realise how seriously ill you really were.
Hope you continue to improve, take it one day at a time, you will get there.
Thinking of you, best of luck.
Tony F

Hi Simon, yes, I found that I had dry skin on face around ears etc tried all sorts creams, but Boots no7 for men worked really well. A good hand cream for hands and forearms and a good body lotion for elsewhere!
Hope this helps.
Tony F

Hiya Peter, I tend to agree with Annette, listen to the haematologist. I was diagnosed at 67, had a stem cell transplant at 68. Had 26 months completely free of drugs, travelled to USA, Hawaii, Spain, Greece and over the UK. Lived life as one should! my pp’s were at 9 when I relapsed. My age now 71. I have just started on velcade, dexamethasone…[Read more]

Vicky, so sorry to hear your sad news, our thoughts are with you and your family at this time.
Tony F

Hi lej13, sorry to read that your dad is having problems with his treatment. I am on velcade, dexamethasone and thalidomide, I wonder if the pins and needles could be neuropathy, in which case you do need to talk to the consultant and have the dosage changed or the drugs changed for something which dad finds more acceptable. First thing Monday I…[Read more]

Hi, yes seems a permanent problem. Not really a hoarse voice more strained, still odd.
Had an appointment with consultant today, she feels that the voice problem is the Dex! discussed feeling wiped out, not the drugs, seems that I have an infection, so have 5 days of antibiotics.
Regards
Tony F