So sorry to hear your husband has passed away. I hope you have lots of support from family and friends. Grieve for him and remember all the good times you had together. You are in my thoughts and prayers.

Maureen

Hi Stanley

Hope all is going well for you and you are enjoying your holiday in Gran Canaria. We love Puerto Mogan, it is beautiful and quiet.

Ian’s FLC rose again and now at 441. He is having an MRI to rule out any bone damage in his spine. He did have a cold and he also stopped taking tumeric. I wonder if this is related to the rise in his…[Read more]

Hi Peter

When Ian relapsed the first time, he started treatment when is FLC reached 1000 but as you say, every consultant is different. I did ask about a PET/SC scan but the consultant thought it was too early and wouldn’t show up very much. If Ian starts to feel pain or there are any changes in his bloods, kidneys etc then we will press for a…[Read more]

Hi Susie

My husband has been on Zometa since 2012 but we did mention it to her today and she has now said that Ian can now have it every 3 months instead of monthly. If he relapses then he will be put back on monthly Zometa.

Hope this helps.

Maureen

Ian’s FLC rose by 70 this month but all other bloods, kidneys etc ok and he is feeling well with no pain so no treatment yet. The consultant says that if the FLC rise steadily he could have some time yet until treatment starts, so we are relieved.

He will be monitored monthly until any changes occur.

Hi Rebecca

Good to know you are still in remission, we’ve been on this journey around the same time.

I am staying positive and as you say the consultants will find a treatment which will work for Ian. There have been a lot of advances in Myeloma in the last few years and more treatments so I am hopeful and we are living life to the full before…[Read more]

Thanks Mavis, trying to stay positive and hopefully Ian has more time before treatment.

How are you?

Maureen x

I am so sorry your husband has passed away at so young an age. Take time to grieve and remember all the good times you had together. I am thinking and praying that you find strength and comfort knowing he is at peace.

Hi Jan

Good to know you harvested enough stem cells for your transplant. Ian had plexifor too as well as 4 days on gcfs injections. You should have a nice holiday to look forward to when you are well enough to travel. I hope your SCT goes well and gets you into remission for a long time.

We had a lovely holiday in Copenhagen despite one day…[Read more]

Jan

My husband has free light chain myeloma. He didn’t respond well to velcade nor revlimid. His FLC were 168 and I asked if he could have a SCT. One consultant said no but another disagreed and he had his SCT in May 2015. His FLC were then 500 but he then had cyclophosphamide and melphalan. He has been in remission since then and doing…[Read more]

We use nowicantravel. Very reasonable but we haven’t had to use them on our trips so can’t comment on how good they are.

Maureen

Hi Jan

Case is not packed yet but everything ready to put in it. Why do women have to do the packing? We are returning on Friday so not taking too much. I only hope the weather stays dry.

We have had a busy period over Easter. My daughter came up from London for a few days and we spent Saturday in Edinburgh as Ian was at the football with his…[Read more]

Hi Jan

We had a lovely time at Ian’s 60th with family and friends. Now looking forward to going to Copenhagen, just hope the weather is kind to us.

Have you got a date for your next SCT?

Hi Stanley

Good to hear from you again and hope you are doing well

Maureen x

So sorry to hear your mum passed away but she will always be with you. Remember all the good times you shared and be thankful she didn’t suffer.

Maureen x

Hi Jan

Good to hear your FLC were decreasing, last time we wrote. Have you got a date for a SCT?

We have both got bad coughs again. I went to London last weekend to meet up with my daughter, went to see the musical Beautiful about the life of Carol King. I loved it and knew all the words, that was my era. I also climbed 376 stairs of St…[Read more]

Hi Helen

Hope you are still doing well. Ian is 3 years past from diagnosis and I never thought he would make it but here we are 9 months post SCT and still doing well. I have arranged a birthday lunch for his 60th birthday and have requested donations to Myeloma.uk. We couldn’t get direct flights to Vienna so we are off to Copenhagen on 29…[Read more]

Hi Jan

Ian’s FLC rose to 22 but his Kappa FLC rose to 24. Ian has always had Lamda light chains and the consultant was confused as his kidneys are fine. He wasn’t worried as the ratio was still within normal range and we return in 2 months. i am not worrying about it at the moment but will do if FLC continue to rise.

Planning a lunch at the…[Read more]