[bandityogaParticipant]

Hi Pat and Liz It has really tough coping without Ian. Like you I had lots of paperwork to get through and it kept me busy. I had counselling at our local hospice but it was too soon after Ian passing away and 6 months later I was so bad I was obsessing and got put on antidepressants from the doctor which did help a great deal. I am now feeling much better and coming off them. Time is a healer but I will always love and miss Ian.

My family and friends have been a great support to me.
I keep busy exercising, gardening, volunteering at my local church and I also joined an art class. I have been on holiday a few times with various friends but find that so difficult. I have booked a trip to Russia with Cox and Kings in August in a group so really looking forward to that.
There is a group called Wayup online who organise to meet up for coffee or holidays etc. They do help as they know exactly how you feel.
Be kind to yourselves it’s not easy.

Love Maureen x

[bandityogaParticipant]

I am so sorry Liz, it is really tough trying to live a new life without our husbands. I hope you have a good network of family and friends to get you through this. Keep yourself busy and try to remember the good times.

Love Maureen x

[bandityogaParticipant]

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 but we were told all bloods kidneys etc were fine. We had no FLC chain reading. We were then told after priming that his kidneys were failing and his FLC were 5000. However his kidneys improved and he was allowed home. He started carfilzomib but after 2 weeks he needed a transfusion as he was very anemic. They then said his kidneys ere worse and the treatment wasn’t working and he was put on palliative care. Ian came home and passed away after 10 days with a heart attack. I was with him at the end but it was so quick I didn’t get to say goodbye. No one can prepare you for the loss of your spouse and although I have friends they haven’t gone through it and don’t quite understand.

I miss him every day and my heart is broken. He was such a kind, loving man. I am also receiving counselling as I still cry a lot but it is early days. I have an appointment with a consultant on Thursday to ask questions about the care he received.

This was our second marriage but Ian had no children nor siblings. His poor dad will be 90 in March and missing him so much too. They went to football together. My son and his family live In Edinburgh, 45 minutes from me and my daughter lives in London.

I joined an online group called way up for widows and widowers who know exactly what you are going through. They also meet up in groups for coffee, holidays etc.

Take care

Maureen x

[bandityogaParticipant]

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 rapidly.

I have had a very tough time over the festive season but am going for counselling next week so hopefully that will help me.

Maureen

[bandityogaParticipant]

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 were 93 in May 186 in June and 385 in July. His consultant said all bloods kidneys etc looked good and he didn’t give him high dose steroids as Ian wasn’t too good on them and it might help to preserve his stem cells! We had no FLC reading before priming but he had a urea test the week before and kidneys were good. His FLC rose to 5000 and attacked his kidneys, after cyclophosphomide his FLC were 2000 but kidneys not good. I believe if he had been given some kind of treatment in the 3 months then he might have had a good chance of surviving. I am going to ask for a meeting in the New Year but I won’t hold my breath. The specialist in Glasgow said I could be referred to him after talking to a consultant at our local hospital. I don’t want to go for negligence just need peace of mind.

Hope you have a happy, healthy Christmas. I am going to my daughter’s in London with all the family. The granddaughters will keep me busy.

Maureen

[bandityogaParticipant]

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. There was a huge turnout as he was a much liked and loved man.

I will miss him so much, he was a kind and loving husband but I will get back out there and live as Ian wanted me to do. Trying to remember all the good times we had.

Make the most of every day.

Maureen x

[bandityogaParticipant]

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 loving gentle husband so much but after I have finished mourning, I will get out and live every day.

Maureen

[bandityogaParticipant]

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

[bandityogaParticipant]

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 good friends who help out too. I had a blow out today as I had just changed our beds and as Ian is now having mobility problems the nurse put a sheath and bag to collect his urine. The sheath came off and he wet the bed and the carpet. I am so exhausted, too many visitors. Perhaps need a day of respite or reconsider the hospice.

I hope they find a treatment that works for your husband.

Maureen

[bandityogaParticipant]

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.

[bandityogaParticipant]

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 years of a roller coaster. He is a loving and kind husband and I will miss him so much. I do hope there will be a cure soon but sadly not for us.

Take care x

[bandityogaParticipant]

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 treatments haven’t worked for long and we are running out of them.

If the treatment is working after the first cycle we are adding revlimid through our private health. Taking one day at a time.
I hope it won’t be too long until your husband gets into remission.

Maureen

[bandityogaParticipant]

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 at the Beatson before he starts any more treatment. This is one roller coaster ride. Take care of yourself too as it is exhausting

Maureen x

[bandityogaParticipant]

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

[bandityogaParticipant]

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 eligible for carflizomib and we can access daratumumbab through our private insurance.

It’s a very worrying time. Has anyone had success with daratumumbab?

Maureen

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