Can I suggest that we don’t get involved in political personal slurs however well intentioned, I can’t see the value to the campaign against the actions being taken concerning the withdrawal of the drugs Jeff

Hi, talked about this with my consultant last Thursday -good news was p/ps down another point now at 1.7!- saying how concerned we all are. She was – and she is one I trust – not to be worried, they were confident that they could deal with remissions and saw no real cause for concern. She is not one to mince her words, she tells you as it is.…[Read more]

Hi Ellen thanks for the information, looks like we just have to hang on and hope for the best. If there is anything we can do to help influence the decision making please let us forum users know. Jeff

Hi All, well this has really stirred things up hasn’t it? I’ve contacted Myeloma UK and asked them if they can explain exactly where we stand in the light of these decisions, as I for one am not fully conversant with whats been decided – I just know it’s not good news. I will feedback any answer and information I get. Try not to get too down over…[Read more]

I don’t know if Myeloma UK could give us some guidance on how these decisions will affect our future treatment, it is certainly very disturbing information with huge implications on our future treatment and survival. I will look at contacting Myeloma UK to request further details. Jeff

Hi Tom, I am in the same position as as yourself, on Revlimid and Dex, which is working well at present. As you say, devastating that what is probably the last fall – back drug has been put out of reach to us. It has kept a friend of mine going for several months although it has now ceased to work for him. It’s even more annoying that this is a…[Read more]

So sorry to hear of Colin’s passing, as I know even when you expect it it’s still. so hard. Jeff

Hi, Ben.When I was diagnosed the S.C.T.cut off point was just past my age although I was told I could still have one ( this age has since changed I believe). I had researched the procedure, realised how arduous and lenghty it would be, talked it over with the consultant and family,and decided it wasn’t for me. History has proved it to be probably…[Read more]

Interesting subject and one I have wondered about. At Leicester I see one of 5 consultants, and occasionally a registrar, these vary, this so far hasn’t been a problem. The consultants are all pretty good – although I do have favourites – and seem to have a good knowledge of my case and my problems. I believe they have a case conference the day…[Read more]

Hi Capeltor, thank you for taking the trouble to reply, I am so sorry to hear of the loss of your husband. What you say is very interesting,I have noticed of late that I seem to be drinking more than previously, which is another sign of possible diabetes I have been told.I shall call in at Lloyds Chemists and get myself checked. Steroid induced…[Read more]

Hi Val, although Myeloma , according to my consultant, isn’t hereditory, my middle daughter has been found to be MGUS. So my advice would be to get them checked.After all it’s not an arduous test, just blood test, and if the worst happens, early diagnosis is best. Best wishes, Jeff

Hi, I don’t know if this will work, it’s an every day scene for most of us oldies !!I laughed at this until I realised that this is exactly what I do. Now, finally, somebody has made a movie of it!
Age activated Attention Disorders
No, cant attach it, try looking for it search `
BorehamwoodCamCorderClub
Films we’ve made
Age activated Attention…[Read more]

Hi, I don’t know if this will work, it’s an every day scene for most of us oldies !!I laughed at this until I realised that this is exactly what I do. Now, finally, somebody has made a movie of it!
Age activated Attention Disorders
No, cant attach it, try looking for it search `
BorehamwoodCamCorderClub
Films we’ve made
Age activated Attention…[Read more]

Hi, the amount of pain seems to vary from person to person, like Tony I had mine at the Leics Royal, ( twice) with gas and air, and have had worse at the dentists. Whether it depends on the operator or bone density I don’t know. Anyway I hope yours is not too traumatic, I’d sooner have a BMB than a MRI!! Jeff

Hi, so sorry to hear of the way you are being treated, and the lack of help being offered. When I was put onto treatment Macmillan contacted me if I remember correctly, and arranged such things as benefits, alterations in the house, blue badge. Can I suggest you contact them to see if they can help. As Dusk said, whenever I have been on…[Read more]

Hi All, just reading the latest Myeloma UK magazine article on ” Myeloma and Cognition” Three things causing short term memory loss etc, Chemotherapy, anaemia, and pain killers. Well that’s three out of three for me haven’t had SCT, but am 76, plus well stressed. No wonder I can’t remember what I went into the kitchen for, or who did what in the…[Read more]

Hi,Richard, well,it certainly could be stress, I have been a bit pushed of late. Its most peculiar though, very fine almost like paint overspray, even showing on my nails, so perhaps it’s of fungal origin. Being as usual with everything medical its shown up on a Friday, I’ll just have to keep an eye on it over the weekend .At least up to now it’s…[Read more]

It looks as though this was a bug of some sort went to bed very early Wed night woke up at about 2:30 soaking wet through with sweat changed everything and started feeling better very quickly and am now back to whats normal for me. Makes a change from waking up wet through with a burst stoma bag !!
Just getting in the shower this morning and…[Read more]

Hi, all. Tom, I hope all is going well. I am now on my 11th course of Revlimid and Dex, up to now it has been as above. However, the last few days I have been getting more and more exhausted, falling asleep very easily and seem to wake up freezing cold although the heating is on. Today, I had to have a sleep this morning – not unusual – I spent an…[Read more]