Hi Kay

I guess from what you wrote your a local lady.Thanks for your kind words.I do try and stay positive 99 % of the time,still have the odd days though.Its been harder because there doesn’t seem to be many people local to me that have this awful thing in their lives.I have made a friend with a guy at queens who is at the start of his journey…[Read more]

Hi all. weekly Dex

Me inspirational now there’s a first 😇

Well cycle 18 had a little sting in it’s tail. Had quite bad leg cramps last night for about an hour. Strange place too on my shin. I get cramps quite regularly at the end of cycles have done since I started Revilimid in 2012 and has continued with Pomalidimide. Guess I’m not drinking…[Read more]

hi ian

had barts appointment,they don’t want to see me till October but just been to queens and been told pp is at 4,so I am so anxious and confused now,does that mean it hasn’t worked so good,am I in partial remission now.The consultant at queens says as long as it doesn’t keep going up shes not over worried and wants to see my in three…[Read more]

I wish you both well. It’s not easy – for the partners as well as the patient but others have done it and there is no reason why you can’t. Just lots of TLC required afterwards and expect the odd hiccup.

Richard

That’s really good news. Ian has been through a long journey to reach SCT. I hope all goes well.
Regards
Jan

Ian, I hope that all goes well with your SCT. You ve certainly had a long wait for this moment, let’s hope that it gives you a long remission.
I guess over the years you have read all about SCT, it isn’t a cake walk but you are a tough guy, going through all you have been through over the past few years.
I wish you all the very best.
Regards
Tony F

Hi Dawn,

It can be daunting especially when you’re just setting out on the myeloma journey. Every blood test is approached with trepidation. It does get easier I don’t even ask about my results anymore because I know if I have a problem they will call me as they did my last test with my phosphate being low.

Hopefully CDT will do the trick for…[Read more]

Hi,

From experience, the test can take up to two weeks for the results to be returned to your consultant depending on where the results are analysed in the UK. Usually, both a blood and a urine sample will be tested during the diagnosis of multiple myeloma because some proteins, such as the Bence Jones proteins (free light chains), may not show…[Read more]

Joe, pleased that you got through your tests okay.
To everyone, I can’t believe the differences in the way that hospitals approach a bone marrow biopsy. I attend the Leicester Royal Infirmary, in doing a BMB it is standard practice to give a local anaesthetic and to give gas and air. It really does help, it seems that I have particularly hard…[Read more]

Hi Yvonne

My husband was diagnosed in 2006. He smouldered until 2012 and had SCT. When he was diaganosed I contacted Myeloma UK and they sent me a diary. Over the 9 years it has been invaluable to us. It has different areas – what treatment in – what questions to ask etc. the part I use most is blood results page. It tell you what the normal…[Read more]

Hi Helen,

I was just saying to Steph today that I should text you to see if you were going to the info day! Unfortunately I couldn’t get a signal, we’re in the Lake District, and when we got a wifi connection in a handy pub I got an email of your post!

I’ve seemed to of had a cold on and off since before Christmas though things seemed to of…[Read more]

Hi Vicki,

sorry to hear Bendamustine isn’t working for Colin. It’s a horrible feeling when the consultant says any treatment isn’t working. Hopefully in a month or two Colin can go on to Rev and Dex and get some longevity out of it. I got 22 cycles of moderate stability out of Rev before it stopped working for me and if Colin can get something…[Read more]

Hi,

Sorry to here about your Dad’s continuing back pain. When three of my vertebrae collapsed in 2010 whilst sleeping in bed, I couldn’t move at all for 10 days. I lay on my back in bed for some relief, but managed to gain bed sores on both heels, together with losing a fair amount of skin on the bottom of my feet from the pressure of remaining…[Read more]

Hi Tracey

You need to find out what is causing your husband’s leg pain, therefore I would suggest you certainly contact your husband’s consultant or the hospital team dealing with your husband’s treatment to talk through your concerns. Another consideration is to speak to the myeloma nurses here on this site about your husband’s leg pain. If you…[Read more]

Hi Richard

Sorry to hear about you having to start a new treatment, especially with you experiencing so many negative side effects from the drugs. It does bring back vivid memories of my experiences with 4 cycles of CDT. My concentration levels were so poor. I couldn’t even fill out an easy passport renewal document without making mistake after…[Read more]

Hi Helen

It’s good to hear your news that pomalidomide is still working for you and yes, I totally agree with your comments that the longer you can delay treatment then the more chance there might be of new drugs/treatment being available in the future. Although having the flu for five weeks must have been exhausting and difficult for you,…[Read more]

Sorry to hear about your dilemma, At least they are still talking of options and who knows, Colin may be invited to take part in some new trial or treatment. We just don’t know what’s around the corner. Although I have found the doctors here very good at putting a positive spin on everything, I also found them to be realistic. Your consultants…[Read more]

John, I hope that you reach the right decision for you. By way of spurring you on, I was 68 when I had my SCT.After about 6 weeks I was beginning to lead a normal life, 26 months down the line, and being completely drug free for that time, my pp’s are slowly increasing, currently about 6. I have recently had an MRI and a bone marrow biopsey, to…[Read more]

Hi Richard,

Your list of side effects reminded me of some I’d forgotten. The sweats that’s Dex! Well it is for me. The loss of the ability to concentrate was a major problem for me and I stopped driving because of it. I wasn’t sure if it was caused by the Revilimid or the Cyclophosamide but as I said I didn’t feel safe driving and found reading…[Read more]