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]

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]

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]

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]

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

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]

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.

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]

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]

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 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]

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

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]

There is a myeloma group on facebook. It is a closed group so you have to ask to be added.

Maureen

My husband had his SCT in The Beatson and they were excellent. He was home14 days after he got his stem cells back. He didn’t have too many issues mainly diarrhea and boredom. He took in his laptop to keep him occupied. We live in Dunblane so I was able to visit every day. I stayed 2 night at the hospital when Ian was at his worst,…[Read more]

Our usual cheery consultant said it would be Ian’s last treatment and he may get 18 months and…[Read more]

It’s a hard journey but doable.

Maureen x

unfortunately my husband has relapsed again and finding it difficult to find a treatment that works as each time he relapses the myeloma gets more aggressive. It is such an individual decease but he still has a few treatments left. Not happy with our consultant so asking to be referred to the specialist in Glasgow again.

I hope your…[Read more]

I too think Ian should try all treatments until either his bloods are bad or he has bone fractures. I feel so stressed when we see this consultant and would prefer to see another one, as there are 4 in the practice but no specialists. I will have to speak to the specialist nurse to see what she can do to avoid this consultant.

Ian is…[Read more]

Thanks for the info but the trials in Scotland for daratumumbab are closed. We saw the consultant yesterday (the one we don’t like)and he was very negative, he has given Ian 2 weeks off treatment to see how he feels but if his FLC have increased again he will be taken off treatment. Only option open now are xomabib and mephalan given…[Read more]

Hope you enjoyed your holiday in Cornwall. We went a few years ago to Hayle and we loved it.

Ian’s latest results show the FLC have risen by 20 to 113. I know it’s not a lot but wonder if the treatment has stopped working. He has just finished cycle 5 and we are off to Ibiza for 10 days on Sunday so we won’t know the results for…[Read more]

My…[Read more]

My husband had spinal compression when he was diagnosed in 2012 and had an operation to insert pins to stabilise his spine. It did work but he had to have the pins removed as they caused infection. He has had several treatments and a SCT in May 2015 which gave him 18 months remission. Now on farydak, dex and velcade which is working.…[Read more]

Ian had really good results, after 2 cycles his FLC are now 93. We should get the results of cycle 3 next week so fingers crossed it is still working. He has more fatigue with this treatment and had problems with his bowels but that has calmed down.

We were in Ambleside on 2nd May for a couple of days and had really good weather. We…[Read more]

We went to see a specialist at The Beatson, Glasgow and he suggested that Ian start farydak, velcade and dex and if he gets into remission to collect stem cells. He will then get 3-4 days of radiation and then get his stem cells back. Ian is now finishing cycle 1, 2 weeks on and 1 week off which fits in with our trip to London. He…[Read more]

Sorry to hear that your FLC are continuing to rise and I hope you get on the daratumumbab trial. Ian is in the same boat as pomalidomide has stopped working after 4 cycles and the consultant wants him to go on farydak, velcade and dex. We are going to speak to a specialist in Glasgow to speak about any other options but he has gone…[Read more]

Good to hear you are still doing well and in remission. I am not on technical terms with myeloma but do know a lot more now than on Ian’s initial diagnosis.

We have just returned from a week’s holiday in Playa Blanca and saw our (not) favourite consultant and Ian’s FLC rose from 295 to 331. We hope this is just a blip as he is on…[Read more]

Maureen x

Hope you are doing well.

Maureen x

We were very happy with our consultant as she took lots of time and explained everything we needed to know. If Ian…[Read more]

We are going to ask to see the specialist myeloma consultant at The Beatson in Glasgow which is only 30 miles away. It will hopefully put our minds at rest and let us know why he wasn’t considered for the trial. If we aren’t satisfied, we will ask to get another opinion in London, although the funding in England is different to…[Read more]

Ian has not had a whole lot of of combinations/treatments. He has had CTD, Velcade and dex and revlimid and dex then SCT. We don’t have a specialist in myeloma at our hospital so I have phoned Myeloma UK and asked some questions. There is a trial for early entry to daratumumbab near us but they said Ian wasn’t suitable so we will…[Read more]

Maureen

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]

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]

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

He will be monitored monthly until any changes occur.

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]

How are you?

Maureen x