Hi Donna,

I am very sad to read this, Gill was incredibly welcoming when I joined the forum and her stories about the dogs and the trips to France where always delightful. My condolences to you, your brother and the rest of Gill’s family and friends.

Megan

Dearest Vicki,

My thoughts are with you and your family.

Megan

Hi David,

My husband Phil is on the Pollux trial at Bart’s, he was randomised to the Daratumumab/Rev/Dex arm of the trial. Phil has just finished his second cycle. Things did not start well as he had a reaction to the first infusion of Daratumumab – a bronchospasm that resulted in difficulty breathing and also a rash. He had to stay the night…[Read more]

Hi Karen,

So glad to hear you managed to pop over the France. Hopefully now you have a plan and know what is happening (or at least what the options are until your hear the result of the randomisation) you will feel a bit better, the limbo of not knowing what is coming next can be very daunting.

Phil has only ever had light chains mentioned a…[Read more]

Hi Vicki and Karen,

I try and focus on the fact the myeloma is so individual so even if the first remission is not the 4 to 5 years maybe the second one will be, it is a case of finding the drug that works best for the individual. Phil had velcade as his first treatment (on a clinical trial) and although it worked it has left him with peripheral…[Read more]

Hi Karen,

Sorry to hear your pp numbers are rising. It is a shock when you get the news, we felt the same when we found out my husband Phil was relapsing – we also wanted 4 or 5 years remission after the SCT. Phil actually only had one month of complete remission but his pp numbers rose very slowly. Phil started treatment again last week just…[Read more]

Hi Maureen,

I looked into this for Phil (although he hasn’t done it yet) and I found a Multiple Sceloris group near us that has one. From what I remember it was not too expensive and anyone could use it. It might be worth checking if there is a MS group in your area.

Megan

Hi Vicki,

I have not been posting much as we are still watching and waiting but Phil’s relapse has now been happening since August 2013 and new treatment is now imminent. PP up to 10 but fatigue is getting worse and bone pain is increasing

Hi Vicki,

I have not been posting much as we are still watching and waiting but Phil’s relapse has now been happening since August 2013 and new treatment is now impenitent. PP up to 10 but fatigue is getting worse and bone pain is increasing

Hi Sue,

Tom is doing well, onwards and upwards is his saying and I am sure he will pop in with an update at some point.

Megan

Hi Sharron,

I am so glad to read that the lower dose is more manageable and that you are feeling more positive. I hope the side effects continue to diminish as you start cycle four.

Megan

Hi Maureen,

You and Ian are in my thoughts. I hope you do not have to wait too much longer for the results and when you do get them, if a change of treatment is needed, I hope you find a way forward that works for Ian. A second opinion is a good idea even if it is just to hear another viewpoint.

Megan

Hi Maureen,

That is wonderful news.

Megan

Hi Susie,

Great news about the pp drop. My husband Phil has his zometa infusion over 20 minutes instead of 15 as we read somewhere (it may have been on this forum) that the side effects of zometa are reduced if the infusion is done more slowly. Phil just asks the nurse each month to do this and they set the drip accordingly. Phil has been on…[Read more]

Hi Rebecca,

That is interesting, I am not sure if my husband Phil’s vitamin D levels are still being tested but that was what lead to his initial diagnosis. He was diagnosed with low vitamin D levels and it was only when those levels did not improve and the pain (that we now know was bone damage) got worse that further tests were done and MM was…[Read more]

Hello,

Everyone is different on their MM journey but the 100 day assessment is not necessarily the best response you will get from your SCT. My husband Phil was diagnosed with a PP level of 32. After 6 cycles of velcade-dex-dox on the PADIMAC trial his pp was down to 5. At the 100 day assessment after a SCT they had dropped to 3. They…[Read more]

Hi Andy,

It is such good news, Phil and I are both so happy for you. Long may it continue.

Megan

Dear Sarah,

Thinking of you xxx

Megan

Hi David,

Enjoy the dex free nights, best wishes for a speedy recovery from the op and fingers crossed for the blood results at the end of August. You had such an amazing response to the Rev that I am sure if there is a tiny blip after a month off it will soon be reversed when you start the rev again.

Do you mind me asking how your neuropathy…[Read more]