[valbrewsterParticipant]

Hi Annette,

I have tried Magnesium, Quinine and now take Amitriptyline for the cramps the Am has helped a bit, but have found the very cold weather and damp makes the cramps worse, so I try and keep myself warm, which at the moment is very hard with this bitterly cold wind, it just seems to go right thru you. Just have to take the bad with the good. Hope you are well.

[valbrewsterParticipant]

Thanks for all the replies. When I was first dxd then were not many treatments it is now a different story and I am sure there will be more treatments available. At first you are completely bowled over when you get the diagnosis as are your family. I am a very strongminded person and am determined that this beast would not become my life or take over my personality. Everyone is different and they deal with MM in so many different ways. There is light at the end of the tunnel.

[valbrewsterParticipant]

Thnx for all the responses. Thal. is thalidomide and it is prescribed on the NHS. You are asked a lot of questions mainly about being pregnant or getting pregnant, which I am well passed that age!! My first SCT was in November 2001, and my maintenance treatment then was Interferon which I did not tolerate. I had about 2 years before I went back into treatment. I wanted to keep the 2nd SCT on the back burner and try other treatments. I had Z/Dex., Velcade, low dose Melphalan, Thal/Dex. In November 2008 I had my 2nd SCT.

I hope you all had a good Christmas and New Year.

[valbrewsterParticipant]

Got the results from the EMG, Neurologist told me I have mild neuropathy, no surprise there, it maybe mild but the cramps are severe. He has prescribed 0.50mg of clonazepan to take at night. Also to restart the 50mg of Thal. Will see him again in 6 weeks time to see how things work out. I will start on the new regime next week as we are off to Venice on Tuesday and if there are going to be any side effects rather they happen at home not whilst we are away. Really looking forward to our trip.

Will let you know how it all pans out. Best wishes

[valbrewsterParticipant]

Hi,

Hope Henry is getting over his infection, and I wish well for the SCT. I wouldn't worry too much about the hospital food, after each of my SCT just didn't have much of an appetite but was nagged to drink water. I use to phone my hubby and give him a list of foods that I fancied, usually he got to the hospital and I had changed my mind, but on the whole there was always something that I could eat. I found it easier to eat little and often. Hope this helps. Remember to look after yourself as well. Take care.

Valerie

[valbrewsterParticipant]

Hi Dave,

Sorry to hear that the beast has started to raise its head, quite a shock, sounds like you have a good quality of life, like me. There will be a treatment out there for you, but hey, you may not need any for quite a while, just stay positive and keep practising your swing!! I am off to see the Neurologist next week (29th) and hopefully these awful nights cramps can be treated and I can get back onto maintenance treatment. Off to Venice next month for 3 nights and am looking forward to that trip. Take care.

Valerie

[valbrewsterParticipant]

Hi Chris,

Have been reading your posts and I understand all the emotions you have and are roller-coasting thru. What I wanted to say is that I was dxd with MM in February 2001, after a routine medical at work. My major symptom was a painful mid back. To date I've had radiotherapy for the back pain, VAD, auto stem cell transplant in November 2001, maintenance program with interferon which had too many side effects and stopped. Had about 18 months before I started off on another road of treatments including Velcade, low dose Melphalan, Thal and Dex. Had 2nd stc in November 2008. using cells harvested in 2001. My maintenance program was Thal. which I am currently off because of awful night cramps, but last blood tests showed no mm present.

I have travelled to Canada, Las Vegas, Hawaii, San Francisco, Caribbean and hopefully next month of to Venice. I've never let the MM become part of my life, of course, I am aware of what I cannot do, my consultants say it is my bloodimindedness that keeps me going, which is true.

When I was first dxd Velcade was still being trialled there have been so many new treatments in the past 11 years and there are more still to come. It is hard to deal with at first but believe me there is a light at the end of the tunnel and the road maybe bumpy at times but you will get there.

Take care and stay positive, love Valerie

[valbrewsterParticipant]

Had my EMG yesterday, instead of 15th, for some unknown reason I had remembered the wrong date. The procedure wasn't too bad and it was strange to be able to listen to my muscles. Of course, I got cramp in the right calf during the procedure and the Doctor said she could hear the cramping! See the Neurologist on 23rd, can't get an early appointment as it is half term next week and he is on holiday. At least the test is now out of the way, even if my legs feel sore from where the doctor inserted the needles. The doctor told me I can start up my pilates class and the keep fit for over 50s class. Have missed doing my pilates class as the exercises help with the mid back pain.

[valbrewsterParticipant]

Lin, I had trouble in getting travel insurance with a reasonable premium, I found a company that would insure my husband, (who has had a triple heart graft) and myself and they are MIA and contact details are MIA Online Ltd., PO Box 2109, Rayleigh, Essex SS6 9WH. Only able to take a policy out one month prior to travel, hope this helps. Val

[valbrewsterParticipant]

Saw my consultant this afternoon, and he advised that there was NO myeloma detected, which is good news, all my results have been the same since my 2nd SCT back in November 2008. Because of the severity of the night cramps he is going to refer me to a Neurologist, he feels it could be a very rare side effect to the Thalidomide, shall continue with the daily dose of 50mg but have a weeks break every four weeks. Apart from that am feeling pretty good is nearly 11 years since I was first dxd.

[valbrewsterParticipant]

Hi Min,

Thnx. I spend most evenings with a hot water bottle around my legs, trouble is I also suffering with menopausal flushes, so I am either too hot or too cold. Sometimes can't win. I will have a go with the leg warmers, have increased my fluids and was also told to add salt to my food, I had never ever added salt when cooking so am also giving that a go. Once again many thnx, good luck to you both.
Val

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