[JaveajamesParticipant]

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, which uses the Iceland branding here on the Costa Blanca.

[JaveajamesParticipant]

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

[JaveajamesParticipant]

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 ago. I am on month four which i think will be my last on 25mg as the consultant is hoping the monoclonal reading will be down to about zero.
Perhaps you could help me Andy on another issue regarding blood test results. Do you get a result for the number of antibodies, how is your MM position monitored? Here in Spain the consultant uses the two above, in conjunction with others.
Just had a few days away which were very pleasant, i did of course pack my Movicol which is still working well.
Best wishes
James

[JaveajamesParticipant]

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 biggest problem is managing how much to take. Once started i reduced to one packet of Movicol each evening before bed and increased it to two if need be. I had been taking Special K for breakfast but found it was having the opposite effect and clogging my system up so moved over to bran flakes which are much better. As my pharmacist tells me “eqch to his own – whatever works for you”
James

[JaveajamesParticipant]

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 California prune juice, Waitrose tinned prunes and Liquorice. Also taking probiotics for this week only as i am not sure if they will affect Revlimid when i start again on Thursday. Hoping that i can keep a smile on my face over the next three weeks.
James

[JaveajamesParticipant]

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 similar body with slightly different criteria. For example i managed to get approval for Revlimid after my transplant, when it would not normally be available in the UK until after your first relapse.
David thanks for your suggestion about carrying a recorder when i see the consultant. Brilliant in theory, but i would not want to risk upsetting the consultant by even suggesting it.
Best wishes,
James

[JaveajamesParticipant]

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

[JaveajamesParticipant]

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 given me the drugs without any problem. James

[JaveajamesParticipant]

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

[JaveajamesParticipant]

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 per year. My consultant, Alex, is a brilliant guy who has treated me really well and has done his utmost to get the best for me to get me well again. I have an appointment to go and see him tomorrow to discuss this further.
On the bright side, Spring is beginning to break through here in the Costa Blanca, at last, and all the almond blossoms in the orchards are in full bloom and it looks a great site to see.
James

[JaveajamesParticipant]

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

[JaveajamesParticipant]

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

[JaveajamesParticipant]

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 hopefull. So I am keeping my fingers crossed and in the meantime starting a monthly regime of bisphospherates and looking forward to no maintenance drugs for the next month. I would love a chat with anyone with MM who might be living in Spain. James

[JaveajamesParticipant]

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

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