Hi Vicki

What a worrying time for you both. Ian had revlimid and dex for 5 cycles before it stopped working. I think if cyclophosphamide had been added it might have worked but the consultant didn’t agree.

Ian is waiting on a SCT which has been delayed as he had to have 2 teeth extracted and now waiting for gum to heal. He had a strong dose…[Read more]

Hi Richard

Hope your mock exam went well.

We had a visit to the consultant today and Ian’s FLC came down to 300 from 580 without treatment. SCT should be around 2 weeks depending on his gum.

Maureen

Hi Richard

Hope your mock exam went well.

We had a visit to the consultant today and Ian’s FLC overcome down to 300 from 580 without treatment. SCT should be around 2 weeks depending on his gum.

Maureen

Richard

Sorry didn’t read your post saying you are on revlimid. Ian didn’t have too many side effects.

Maureen

Hi Richard

Just heard your news and I am sorry to hear you are back on treatment. Are you going back on velcade or revlimid?

Ian hasn’t had his SCT yet as his gum hasn’t healed yet from his teeth extractions. Dentist wants him to wait another 2 to 4 weeks but I’m concerned his FLC will be rising as he is not on any treatment. We see the…[Read more]

Hi Richard,
Hi Richard
So sorry to here this. I too am back on treatment, I have just started my second cycle of Velcade and Dex, I went on the MUK5 trials but got radomised the standard treatment. I know what you mean, peed off, I got 17 months complete remission after SCT, they said they don’t do SCT after first relapse, I have stem cells in…[Read more]

Hi Tony

I remember the anxiety, tears and sleepless nights then my husband was diagnosed with Free Light Chain Myeloma but you will come to accept it. My advice is to take each day at a time and find out as much as you can about myeloma from myeloma.org.UK. I have found the nurses on this site very helpful and friendly. Get in touch with them…[Read more]

Ian had a wisdom and back tooth extracted today at the hospital. He was given a course of antibiotics so hopefully there will be no complications. SCT will be another 4 to 6 weeks when thus gum has healed.

Hi Vicki

We will find out tomorrow what dental work will be done and hopefully it won’t be long until SCT. I get very anxious about the SCT but it is Ian’s best chance as there aren’t many treatments left. I pray that it works and he will get a good remission.

I hope that the treatment will work for Colin and you both feel better. Did you not…[Read more]

Carol

Ian is going to the hospital dentist for treatment. His appointment is on Monday but don’t know yet if he is having an extraction.

Maureen x

Hi Maureen,

Good luck to Ian.

best wishes
Karen
xx

ps,

Sorry if that was dreary, I actually do not feel ill, just usual(a bit worse)pains. Managed to get away to France last week for a couple of days, lovely 🙂

Hope everyone is as well as can be expected, I intend to look in more as it is a lovely, friendly site.

Keep smiling xx
Karen

Hi all, thought I best check in. thanks for all your best wishes. The last few weeks have been hectic, backwards and forward to LRI and general, MRI, bone marrow biopsy (IT REALLY HURT THIS TIME!), full skeletal survey. I am making the most of this week, as it is the only week I will not be going to any hospital appointments! Yippee.

My…[Read more]

Thanks to you all for your good wishes. I will keep you updated on Ian’s progress.

Stanley,

Ian harvests tomorrow, hopefully he will have enough stem cells on day one.

Maureen x

Hi Mavis

You have been lucky that CTD has given you remission for 5 years although it did work for Ian but he only had 3 and a half cycles as he had to stop to let his bed sore heal. He had no treatment for a year then 3 cycles of velcade and dex which didn’t work, then 6 cycles of revlimid and dex which brought down FLC for 4 cycles then…[Read more]

So sad that your husband has lost his fight with myeloma. Stay strong for your kids and remember all the good times. Sit down and talk to them, perhaps you need counselling, as he was taken without warning. Did you have time to say goodbye?

I try to stay positive but know that one day my husband will be taken too.

Sending you hugs and…[Read more]

Great news Stanley