Hello Debbie
My husband steve is also on the XL trial
The vorinstat also was stopped , with no notice
Very little information from hospital

We have never received s letter from the trial office

Steve really struggled when it was stopped , mentally he found it really difficult

Lorraine.

Hi Alex

My husband Ian passed away in November 2017, 5 years after being diagnosed. He was put foward for another SCT but using TBI instead of mephalan. His first SCT gave him 18 months remission. He had 5 cycles of farydak, dex and velcade and responded well but starting relapsing again. He had no treatment for around 3 months prior to priming…[Read more]

Hi Peter

Ian’f FLC of 5000 were at the end of his 3 months no treatment. The consultant said all bloods and kidney function etc were all good at his check up every month. I do not have Ian’s reading but I intend to ask for a print out if possible. We weren’t concerned that this FLC were 385 but I do not know why they increased to 5000 so…[Read more]

Hi there,
So sorry to hear about your son. On the positive side UCLH are one of the top hospitals specialising in Myeloma/ M.M in the uk and have 1st class specialists in this field so please take this on board and know that your son is in good hands.

I am up at UCH tomorrow for an update on my own treatment plan prior to a hopeful SCT.
Try to…[Read more]

Hi Richard, good to know that the revlimid is still working for you.

I am still struggling to come to terms that Ian has passed away as it was so quick at the end. I still have questions as to why Ian had no treatment for 3 months leading up to another SCT but using radiotherapy instead of mephalan. His last treatment was 2 June and his FLC…[Read more]

Thank you all for your condolences. Ian fought hard but in the end his kidneys were failing because of the myeloma. I also fought so hard for treatments for him and would advise anyone to go to a hospital where they have a myeloma specialist as we didn’t and often had to get a second opinion. He had a lovely funeral and he wrote his own eulogy.…[Read more]

Said goodbye to my loving husband today. The service was very emotional as Ian wrote it himself. There was a huge turnout at his funeral as he was both liked and loved by many.

He tried so hard to beat his and I did help with all the research I did but sadly after 5 years all treatments stopped working and he is now at peace.

I will miss my…[Read more]

Hi Ellen

I feel guilty that I am healthy and try to do as much for Ian as I can. I wish that Ian had not had myeloma and put my life on hold to care for him.

Maureen

HI Pat

Ian didn’t respond to velcade nor pomalidomide and had 5 cycles of farydak which gave him terrible diaherra and then stopped working.

I am caring for him at home with help from hospice at home and nurses from our gp practice. It is really hard work as my son and his family live in Edinburgh and my daughter is in London. Ian and I have…[Read more]

Hi Richard

Sorry to hear you have relapsed but I hope they find another treatment that works. daratumumbab has been passed in Scotland but my husband, Ian is now on palliative care as the treatments don’t work for long.

Hi Adelaide

Ian was taken off carfilzomib aft 2 weeks as his kidney function , platelets and blood were all off. This was his 6th line as nothing really worked for long except his SCT which he got q8 months remission. He’s now on palliative care at home and think he will not last long.

Feeling devastated but also accepting as this has been 5…[Read more]

Hi Teresa

My husband started carfilzomib and dex last week and I am praying it works as his FLC were 12000 before treatment. It is such a long time spent in hospital for the infusion but I go for a walk or a swim whilst he is having it.

It is five years since he was diagnosed and got 18 months remission from SCT in May of 2015 but other…[Read more]

Hi Helen, hope Dave gets a date soon for SCT. Ian didn’t get to harvest as his kidneys were poor after receiving cyclphosphomide and his FLC were 5000 and we were told to prepare for the worst, however after 4 weeks in hospital his kidney function improved and he got home yesterday. Still weak as he is anemic but got a referral to see Dr. Soutar…[Read more]

Hi John

Sorry to hear you have been diagnosed with myeloma. My husband was diagnosed in October 2012 at the age of 56. He has not had an easy journey but still fighting. There at a lot of new drugs around and there are many members who have not had a SCT. It is devastating on diagnosis but try to stay positive and take one day at a time.

Maureen

Ian’s kidneys are slowly recovering and we were advised he should be home by the end of next week. His FLC are now 5000 which is very surprising as his bloods were monitored every 2 weeks. Consultant has asked us to consider if he wants to carry on with treatment which might not give him much remission and have not so nice side effects. He is…[Read more]

Hi Eve and Rebecca

Ian’s kidney function is improving slightly each day but still far from normal. He has never had an issue with is kidneys even whe his FLC where 4000 on diagnosis. I think they said it was 550 and normal is 200. No FLC results but think it is the myeloma attacking the kidneys. Consultant advised that as Ian has had several…[Read more]

Hi Eve

ian’s kidney eGFR is 6 and as he has had several treatments the consultant thinks this is end stage. I am praying that today his kidneys improve and I will talk to the specialist at The Beatson to see if his SCT, using radiotherapy can go ahead.

Hoping you continue to improve and get your SCT.

Maureen

Hi Mavis

Good to hear from you and hope your PP levels stay stable and don’t cause you any problems. There aren’t many of us left on this site since diagnosis and I do prefer this site to the support group on facebook.

Things don’t look too good for Ian at the moment as his kidneys are not functioning very well. His bloods, kidneys etc were…[Read more]