Hi David
Well this is how I understand it …. A normal immunoglobulin ( A,D,E,G or M ) is usually drawn as a Y shape, made from 2 heavy chains with 2 light chains bound to it on either side, kappa and lambda.
Light chains are not fixed very firmly so it’s not uncommon for the normal population to have low levels of flc in their blood as they can…[Read more]

Hi. I’m not the one with myeloma but my husband was diagnosed at the start of January after having had a plasmacytoma diagnosed and treated last year. I think any pain should be taken seriously, so don’t wait until your next appointment with the consultant but get it checked out. If you have a clinical nurse specialist, give her/him a call on…[Read more]

Hi Angela

We have BUPA and my husband was diagnosed 2006. His consultant did not take private patients and although I tried to encourage Frank to go the private route, (thought he would have more individual attention) he decided to stay with NHS. Although I have had some gripes, Frank is very happy with the route he took and when he has needed…[Read more]

Hi Julie

My husband is on fourth line treatment CDV. It’s exactly 3 years since he was diagnosed,I often wonder if he had not had a SCT would he have had a longer remission!!!!!

So I suppose we all do what ifs,hindsight is a wonderful thing,just wish I had the gift.

The problem is often the type of Myeloma and how aggressive it is,plus the fact…[Read more]

Hi Vicki and Colin

I don’t understand what All clear are up to. That’s who we got insured with. Frank did it all, I, thankfully was not involved. I know they were sticky on “do you take powerful painkillers”. Frank doesn’t. His consultant wrote a letter saying about SCT and about tests PET scan and said “no detectable myeloma cells”.he doesn’t…[Read more]

Hi Jean

Well we have just passed three years,in this Myeloma Bubble,and the Myeloma seems relentless if I clocked up how many hours have been spent driving,waiting for treatment and every thing that goes with it,I am sure it would add up to a good portion of those three years,yet it’s time we are trying to buy,a bit like Dai trying to get to…[Read more]

That’s great news, Fiona! I’m so pleased for you both. It’s wonderful to discover that what you have been hoping for is actually happening.

I’m sure your husband is young and handsome. They stay that way in our eyes at least!  😉

Enjoy the moment and thanks for posting your encouraging news.

Sarah x

Hi Carol

Before Frank had SCT our travel insurance was through Columbus. They were good. After transplant we got a yearly policy with All Clear. Excellent price although it did not include USA

Jean

Hi Eve

Glad that Slimis getting treatment. Hope he gets something good out of it. I know more and more treatments are coming on line but let’s hope Nice Get their finger out soon. I play scrabble on my iPad. “Words with friends” I play with Elaine, Toms wife. To be honest it acts as a relief. I look forward to our games. I’m glad to hear that…[Read more]

Hi Jean

You will never get away with Gushiness at Scrabble!!!! Miss playing but did not like the new format and I tend to use an I Pad,also lack concentration these days,so it’s jigsaw puzzles at the moment,it’s something we can do together.

We now go to the Royal Marsden in Surry,bit of a journey,but easier than going to central London.Started…[Read more]

Hi J

Welcome to the site,if I was you I would put your post in general,as people do not look at carers very often,I post here as I am a carer and at the moment my news is not good and I am aware,some people do not want to hear bad news!!

Now to you J,it’s going to be a hard roller coaster ride no matter what your Dad decides,you will not get…[Read more]

Hi Ozzy

Just a quick one about Claxane ,There is a pill I cannot remember the name,Slim used to be on it,and I think Andy is on it,does the same Job,so might be worth asking consultant about it,Eve

Hi Eve

I don’t know how I missed your post. I’m so sorry to hear about Slim, I know you don’t like gushiness (is that a word – must look at a scrabble dictionary). Just want you to know I’m thinking of you both and hope you get second opinion soon. Slim is a lucky man to have you fighting on his side.

Love and prayers to you both
Love Jean x

Hi Stephen

Well I can only tell you about Slim,after SCT and 100 days BMB,he was told he was in full remission and had 0.00 Myeloma cells in his body !!! It came back before 6 months was out!!!

As you know different people different results!!!

So make the most of your life,lock the Myeloma away,get on with living,Eve

Forgot David ,only had…[Read more]

Hi Carol

Sorry I thought I had replied to you,I have been following your SCT,and must admit you have done really well,must be the desire to get back to Australia !!!!
We have taken up the option of a second opinion and would recommend it to any one,even the experts have different opinions and views,I think it’s because Zmyeloma treatments are…[Read more]

Hi Jan

How are things with you??? How is the treatment going,you are another one like Princess Fiona who has gone off the radar a bit!!!!,or is it me not looking into the site as much!!!!

Thank you for the connection recordmenow,I have looked at it,but do not know if it will happen,Slims not one for expressing his feelings about anything,so I…[Read more]

Hi Stephen

After 4 cycles of CDT and a SCT, my light chains reduced from 2,200 to just below 20. It’s been almost four years next month since I was diagnosed in March 2010 with myeloma and over these years, my light chains have behaved unpredictably sometimes increasing, sometimes staying at a plateau for months, sometimes decreasing, but now…[Read more]

Hi Eve,

When I read your comments, like others have mentioned, I just didn’t know what to say. I am so sorry this has happened. I’m really sad for you both. It must be so difficult for the both of you trying to live relatively normal lives in such an abnormal situation. I hope Slim is able to live each day as well as he can to best fulfil his…[Read more]

Hi Andy
Good results there, hope it continues to do the trick. Enjoy the beer, I still can’t drink alcohol, my taste buds must have been totally nuked!
Love Helen

Hi Julie,

My husband’s surgery was carried out at the Nuffield Orthopaedic Centre in Oxford. They have a number of spinal specialists there, but his consultant is Jeremy Reynolds. Our local hospital felt that he needed a level of specialism they didn’t have, as their spinal surgeon was more experienced in lower spine.

I do hope you can make some…[Read more]