Thank you so much Debbie for posting this. It is so helpful and reassuring. My husband was a bit upset at first as he thought this might be the cure! He was very irritable and difficult to live with when he was on the Vorinostat. I definitely knew it was week 1 or 3 of every month so I am very happy he has been taken off it, especially as the side effects are not acceptable. It’s still early days but I think he is a lot happier. We will await the letter. Onwards and Upwards xx
Angela
Hi Richard, sorry to hear the Revlimid is no longer working. That’s all Graham is on now for his maintenance and I realize it won’t work for ever but just glad it’s working for now and he will make it to his 60th in two weeks’ time. We are having a big party. I can remember reading the figures of 50% surviving 5 years when he was diagnosed in 2013, and wondering if he would make it to his 60th. I now realize these figures were probably very out of date and that even though he was diagnosed at Stage 3 that didn’t really mean much at all in terms of survival. Good luck for your next round of treatment.
Angela
My husband is on Revlimid maintenance as part of Myelomz XI trial following his SCT. His Consultant said that what he is taking would probably cost about £3,000 a month !!!!!! We could never have afforded that ans so glad that he is on the trial. I hope you can get some maintenance that would be good for you on the NHS.
Angela
Hi Richard
I too hope you get some good results on Monday. Dr A won’t tell you too much about the next stage as he takes things very slowly which is good because it would be too much to take in all at once and you need to concentrate on what’s happening at the moment and see how you do. The main thing is to get rid of your pain and get your bloods to a stage where you can have a SCT – and not everyone goes down this path. Some people just carry on with medication and that’s your choice.
Good luck for your appointment next week – Graham is there on Wednesday for his monthly Zometa infusion to strengthen his bones and it’s the 4th week of his monthly cycle so he doesn’t take any medication next week.
Angela
Hi Peter. Graham was only admitted to MRI for about 2 weeks. After stem cell transplant was carried out he was allowed home for a couple of days until he started feeling poorly so that was good. He then had to go straight to isolation when admitted as he had a bit of flu. He also had a morning in intensive care and while there rang me for a bacon butty. However, after discharge you are still under the same unit for 100 days and so you have a couple of follow-up appointments at the transplant hospital before being transferred back to your original hospital at 100 days.
On the maintenance now Graham is on Revlimid and Vorinostat. On weeks 1 and 3 he is a bit irritable but he is unaware of this. I would have preferred him being on no maintenance but he decided to carry on with the trial and we will find out in the future whether or not this was the better.
Yes you are right about the chest infections this year and I was ill too but for the last 3 years Graham has always been bad at around late December/January and it takes him a while to shake it off. Graham most certainly does enjoy wine and beer with his medications and has only avoided alcohol during the stem cell transplant period when he didn’t really feel like it. He suffered from a bit of nausea for a couple of weeks after transplant but when he had his first beer I was really happy because I knew he was getting back to normal.
Wishing you all the best with your treatment.
Angela
Hi Richard
We saw Dr Allameddine yesterday for Graham’s 3 monthly appointment. His bloods are still good so he carries on normally with his Myeloma XI maintenance (now 3 years in stringent remission). It’s now 4 years since diagnosis and Graham said to Dr Allemeddine that he was only originally expecting to survive 5 years and then Dr A said well you better enjoy the next year then with a smile on his face. Graham’s appointments are always fun in a way if that’s possible. Dr A said to me that whenever I have had enough of him I can e-mail him and he will give him the placebo instead of his maintenance drugs :). Dr A said yesterday that When Graham does eventually relapse he will be having exactly the same treatment again as it has worked so well this time round but I am hoping he has another few years yet before he has to consider this.
Graham had 6 cycles of treatment before he was ready to have his SCT and then he had to transfer to Manchester Royal Infirmary to have the transplant whose care he stayed under until 100 days after SCT. He then transferred back here to Oldham with Dr A. Graham found it very hard saying goodbye to all the staff at MRI as they were all so amazing but it was lovely shutting the door to the isolation room at discharge.
Graham has had a bad chest infection and cough for about 4 weeks from late December until now and he seems to be like this every year. He has only gone back to his art class this afternoon as not been well enough since before Christmas so I am glad he is getting back to normal again and we are now planning my 60th birthday party in 3 weeks so lots to look forward to and it should be a really fun night. Graham will be 60 in November.
Hope you are doing ok Richard, Angela.
Hi Richard, It was great to see a post from you and to see that you are doing so well and learning new skills. I can’t believe it was 3 years ago when you were about to go through the SCT at the same time as my husband Graham. It’s so good that you are both doing so well. Keep it up and I am sure you will see your pension. I am 60 and get my NHS pension next month and then going back to work 4 days a week after that. Can’t wait. Another 6 years until we both get our State Pension. My husband now enjoys art and still does a bit of private teaching and some marking for an exam board. xx
Hi Pepz, I agree totally with what Rebecca has said. My husband was diagnosed with Stage 3 and at the time you think it sounds so bad compared to Stage 1. i think Stage 3 was because he had damage in his spine with some collapsed vertebrae and he was originally in agony with his back. However, now he is nearly 3 years in remission following chemo and a stem cell transplant. Like Rebecca said I am continually looking at the forum and the facebook group “Uk Myeloma Support Group” and I read to him all the positive things I see regarding long term survival. You do have to take things one step at a time and his Heamatologist treated him exactly like this. Treatment these days to control this is so much better than it was years ago so don’t google anything as the information will be out of date. Just look at the Myeloma UK website.
Good luck with your Dad’s treatment, Angela
Hi again Richard
Even though my husband has been nearly 3 years in remission he still gets bad chest infections and colds at winter time so he definitely could not have carried on with working as a lecturer in a college full of students. He was 55 at diagnosis and our daughters had been through Uni and now don’t live with us so money pressures were off us a bit but it would have been so much harder had he been younger at diagnosis. He still loves a pint by the way Richard and has never not drank (unless it was just after the SCT and he felt nauseous). He also does a bit of marking in the summer time for Edexcel Examining Board (now Pearsons) so keeps his hand in there. We go on holiday as we did before although insurance a bit more expensive but we can now go out of term time which is great. My husband has never been into fitness so he isn’t missing out on anything there as well but spends a lot of his time writing songs and playing his guitar. Life is different and we carry on as before as much as we can do. Graham never wants to join any discussion forums or facebook groups as this reminds him he has cancer and he just takes his tablets (Myeloma XI maintenance) and gets on with things as normally as he can.
Angela
Hi Richard, I hope the Bury Support Group have been in touch with you by now. I wanted to go to their meetings but my husband who has myeloma didn’t want to go so I learned all I could from this forum which was so helpful to us after he was just diagnosed. I used to tell him all the positive things I had learned. He was an IT Lecturer and his work let him work part time in the beginning and do some work from home but after his SCT his college rescheduled his job and offered him redundancy (about a year’s pay) and he took it. Best thing he has ever done as he now does not have the stress of work and does things he enjoys – and he occasionally makes my tea. You have the same Haematologist as my husband I think as he too is at Oldham (Dr Allameddine) and he is amazing. My husband had a phobia of hospitals before diagnosis but Dr Allameddine changed this. He is nearly 3 years in remission now following 6 months of chemo and a stem cell transplant and doing ok. He has a Zometa infusion to strengthen his bones monthly now and bloods and sees Dr Allammedine every 3 months. He was originally diagnosed with fractures in his spine and it took 5 months to get to diagnosis and he had to endure 5 months of painful physio for his “bad back”. Once he started chemo the pain improved and after 8 months he could lie flat and sleep in a bed again. It was awful at the beginning and you have so many questions so I hope you find Bury support group helpful.
Best wishes and good luck with your treatment,
Angela
Hi Scott, I remember you from the early days. My husband was on Ward 44 too and diagnosed 3 months before you. He too is still in full remission and on Myeloma XI trial and taking Revlamid and Vorinostat as maintenance. He is now back at the Royal Oldham Hospital for treatment after his 100 days post transplant. You are doing brilliantly if back at work full time. My husband is 58 and I am glad that he didn’t go back to work as he had a very stressful job. He now goes to art class and does other things that he enjoys and life is a lot better than it was back in 2013 when he had horrendous pain in his back and fractures in his spine. Lets hope for lots more years of remission! We are off to Puerto Rico on Sunday. Now he is no longer teaching we can go away in term time! Got to look at the positives.
My husband has now been having Zometa infusions for 3 years and says the pain afterwards has lessened to what it was originally. He now makes sure he has lots of water afterwards so he doesn’t get dehydrated. He has never mentioned sore eyes but definitely gets some back pain and other aches.
Best wishes, Angela
I work at a hospital and once you have said once that you would like copies of clinic letters you should get them automatically after every visit. Just in case though when you arrive for your appointment inform the clerk on reception that you would like a copy of the clinic letter. My husband gets his clinic letters and has never had to ask again following his first appointment as he now gets them automatically.
I am having surgery for something completely different soon and I asked for a copy of the ultrasound scan report that the Consultant was discussing in clinic to be sent to me with the clinic letter. I then received the report and clinic letter together which was quite helpful so I could then take time to digest the contents of the report on my own. I keep all my husbands clinic letters in a folder at home. Best wishes, Angela
Hi Mark
My husband was probably smouldering for years and unaware of it. He had many pains with hips and back over the years and put it down to his gout. He was diagnosed at the stage of having had a bad back where he would collapse to the floor and after 5 months of intense back pain and physio that made things worse he had an MRI scan which confirmed fractures of his vertebrae and then his treatment started. If we had known in advance he was smouldering the fractures might not have got as bad as they did and his treatment could have started sooner and he would not have been diagnosed at Stage 3. However, maybe he has had less worry as he did not have the smouldering years to worry about. I wish he had been diagnosed earlier though and then we could have been more prepared for the bombshell that hit us and he would have had good monitoring which you will now have. However, he has been very lucky so far and now 2 years in full remission since his stem cell transplant. He decided to give up work at 57 after stem cell transplant as his teacing job was being restructured and he is now doing things he enjoys – he is at his art class this afternoon. Good luck for the future and I hope you smoulder for a long time yet. xx
Hi Faye
My husband decided he would go with the Myeloma XI trial and you are then randomised and the computer in Leeds decides whether you are on it or not. He had his stem cell transplant 2 years ago and has been in remission since. He was then randomised again and is now on maintenance treatment which he is coping well with although I personally would have preferred him not being on any medication as before he was randomised for maintenance treatment he felt more normal – now he has 2 different medictions to take and there is a one month cycle which he follows. My husband is glad he is on the trial as he is hoping this will extend his life.
Angela