Hi,
Movicol has been my salvation over the past nine months. Getting the dose right is somewhat of a problem, but eventually you get the hang of it. I also have a high fibre diet with lots of fruit and i take prune juice. The cause for me is Revlimid.
I live in Spain and the only supplier of prune juice that i can find is Overseas Supermarkets,…[Read more]

Hi Andy,
Thanks for your reply. Not sure about the immonoglobulina G,g being the same as the paraprotein reading in the UK. Mine is about 600 against a range of 650 to 1400. Before Revlimid i was about 5500. So not sure how this equates. The consultant tells me he looks at a range of readings.
James

Hi andy,
Thanks for your thoughts on looking out for what you eat. I have been so good recently that i have become careless and my neutrofilus are quite borderline.
I am on Revlimid and the results have been significant. After two months my monoclonal and immunoglobulina Gg were lower than at any point since diagnosis some three and a half years…[Read more]

Hi Andy,
Thanks for your comments and i will certainly look further into taking probiotics. I have only taken them during rest periods and not when i have been on treatment. I am now in my rest period following three weeks of Revlimid 25mg. I have managed my bowels much better than previously taking the prune juice, bran flakes and Movicol. The…[Read more]

Hi everyone. Thank you so much for your replies. I went to see my consultant on Thursday and there was a stand in as my usual doctor was on holiday. She prescribed me Movicol which has similar ingredients to Laxido. Not tried them yet as i am on a pause week. I also did a round of the Health food shop and Iceland and got stocked up with Sunsweet…[Read more]

Hi. Thanks for the comments. Andy it was really useful to hear of all the differing drug combinations that you have had and i certainly admire your tenacity and determination over a fairly long treatment period. Living in Spain is great but it does leave me a bit isolated when it comes to these things. Here we do not have a NICE, but there is a…[Read more]

Thanks David, but unfortunately i cannot remember them as the consultant rattled them off when i asked and we moved on. My lesson that i have learnt is that i must ask him to write them down for me. Next visit i will clarify them. James

Thanks Eve and David, that is very helpful. I cannot understand why he is not suggesting Velcade or Revlimid as I responded well to them. He tells me that he has certain protocols to follow! The chemo being offered i did ask what it was and he reeled off three drugs i was not aware of. I find it all quite strange as he has been very amenable and…[Read more]

Thanks Gill, for me walking is difficult a because of my knees, but thanks for your comments. James

Again many thanks folks for your comments. Very useful in forming an opinion. Unfortunately my consultant rang today and told me that the authorities in Valencia want me to try interferon, rather than lenolidamide as recommended by him as a maintenance therepy. I am not suprised as Valencia is strapped for cash and it would cost over 50k sterling…[Read more]

Hi David, Thanks for your comments. A really good point about not using weights. Today I have had a setback with my maintenance treatment as the consultants plan has been thrown out on cost grounds. I have talked more about this on the newcomers blog.
James

Thanks Phil, very useful. I was hoping to get to Italy this Spring, but had worries over the insurance. I will give this company a try. James

Hi everyone. Many thanks for your comments. I went to see my local consultant today and he agrees that for me there are disadvantages with both thalidomide and interferon and to my suprise he recommended that I should take lenalidomide. The big snag is the cost and it will need the Spanish Health Department in Madrid to approve it, but he is…[Read more]

Hi Thanks for your comment Bridget. Did you choose not to have maintenance because your paraprotein levels were very low, or because of the side effects? What was sct? James