Dear Jane,
I’m so sorry I’ve only just seen your post. I don’t visit this site often so rely on notifications. I hope things are going well for you and your dad now,
best wishes
Teresa
He’s been on treatment since diagnosis in December 2016. There were a couple of months after his stem cell transplant in 2018 where he had a short remission but he was and still is, on maintenance treatment of Ixazomib, Revlimid and Dexamethasone.
Hi
Yes he was successful. We backed up the claim with copies of his prescriptions and letters from his GP and consultant.
It was very straightforward. The MOD agreed that he was eligible and produced a document explaining why they recommend he takes ill health retitement. This report came in useful when he applied for ESA which he’ll receive until he reaches full retirement age.
Teresa
Hi Sue,
Your husband will be regarded as clinically extremely vulnerable and you should be shielding. We’ve recently had a letter telling us to continue shielding until 31st March. It was previously 22nd Feb so it could possibly be extended again. So I’d recommend that you don’t go back to work if that’s possible.
My husband can sleep for England! Twelve hours at night and a nap in the afternoon. Mind you, he has managed a couple of odd days down at the lake for a day of fishing when he gets up at 7am and us there until 7pm so I reckon he’s just stuck in a rut.
He’s about to start a course if iron so hopefully that will buck him up a bit.
Wishing you well
Teresa
Hi,
My husband worked for Ministry of Defence. He enjoyed his work and his department were excellent at protecting him from infection eg providing hand gel and staying away if they had coughs/colds etc
However, work was all he could manage so home life became non existent. His line manager suggested ill health retirement and made the initial enquiries to establish if he was eligible.
We felt we could manage on the pension offered and discovered Employment Support Allowance which is a fantastic top up.
Best wishes
Teresa
Hi
My husband is on maintenance treatment of IRD and gas been since his stem cell transplant in 2018.
He tested positive for Covid in November and needed hospital treatment which fortunately was only for one week. Everyone was amazed at how quickly he recovered.
He had his vaccination three weeks ago. Apart from being permanently weary he is so big well. He is to start a course of iron supplements which hopefully will give him a boost.
All the best
Teresa
Hello David
I’m sorry to hear about your mum’s poor mobility. The Myeloma journey has many ups and downs.
Are you able to increase the number of carers visits – my mum had four a day for a while. Possibly the district nurse could visit to give some practical advice or your parents could get in touch with the continence service. Your mum should have details of a clinical nurse specialist as part of her “team” who could help.
There should be lots of help out there, it’s just finding the info that takes a bit of leg work.
Wishing you and your family all the best
Teresa
An update,
My husband is back on a low dose of Revlimid alongside Ixazomib and Dex. At the last clinic appointment we were told that his light chains are steadily rising but still in very low figures – his are at 43 whereas apparently some people are in 10,000s. No sign of PP’s but as he became a non secretor in the first year I’m not surprised. The only way to check is to have a Bone Marrow Biopsy but its not my place to query whether he should have one.
New Years resolution – to tackle the weight he’s put on which will help his mobility and hopefully reverse the type 2 Diabetes he’s been diagnosed with this yar!! I’ve been reading that loss of appetite is a possibility on his drugs cocktail so that might actually help.
Teresa
Gosh yes, I remember how overwhelming it was at the beginning – a timetable of tablets to take, injections twice a week and seemingly endless appointments over several days. We were lucky to have a nurse who understood how it seemed all too much for us and she sorted out the appointments so we weren’t going in what felt like almost every day.
After a while the injections went down to once a week and a nurse came to the house to do it. I got my husband a set of pillboxes and fill them up weekly. This year my husband is being monitored every four weeks but hasn’t had to go into clinic – he has his blood tests and then the specialist nurse phones him to discuss how he is and prescribes the next lot of meds.
I can assure you that things do settle down and you will be able to take it all in your stride. It is a long term condition so life does change but you learn to live with it.
Wishing you both all the best,
Teresa
Hi Rebecca,
I do understand the loneliness of being a carer and the responsibility you feel of trying to make sure your loved one is not suffering unnecessarily. My husband is stubborn and won’t normally ask for help so I’m the one making the phone calls. We are so lucky to have a couple of part time nurses to phone for advice, a day clinic open until early evening and an emergency line (for those midnight calls!!)
As time goes on things have settled down for us and I’m not constantly checking his temperature but always alert if he says he’s not feeling so good. I find a little nap usually sorts him out.
Keep posting on here, there is always someone who will have experienced what you’re going through.
There is a Myeloma UK Facebook group which can be a help sometimes but I found reading others experiences/worries was a bit too intense for me so I came off it.
I did make a contact in my own area who was a voice of reason for me in the early days so it was worth joining at the time
Best wishes
Teresa
Hello,
My husband had an allergic reaction when he first started treatment and after stopping everything except the Velcade they gradually reintroduced the drugs and it was decided that Cotrimaxazole was the culprit.
After 6 cycles of that combo he had 2 cycles of Cyclophosphamide but in tablet form followed by 3 cycles of Revlimid and Ninlaro and Dex. At the end of the 3rd cycle he developed the upper body rash again. As he was then ready for SCT he was able to stop those drugs but antihistamines helped with the discomfort. He didn’t have fever with it.
He’s had 18 months of remission with maintenance treatment of Ninlaro but his light chains are rising again so at clinic this week the registrar discussed starting back on Revlimid and adding antihistamines to the mix. The team are going to discuss this and we’ll find out at the next clinic what the plan is.
I hope you discover which of the meds is causing problems and don’t ever hesitate to call the ward, we’ve always been told to phone if we are worried about something.
All the best
Teresa
Hello,
My husband was diagnosed in December 2016 and followed the same route as your husband – 6 cycles of VTD which gave excellent blood results but bone marrow biopsy showed his levels were still the same., 2 cycles of Cyclophosphamide followed by Ninlaro and Revlimid which got him ready for SCT which he had in January 2018. After the recovery from SCT he was put back on Ninlaro as maintenance. Revlimid was not started again as he developed a rash at the end of his last cycle before SCT.
A few months ago he was told he was in complete remission. Unfortunately this month he was told that his light chains were rising again. His specialist nurse has been looking after him but the next appointment will be with the consultant to discuss the next course of action. His nurse has been saying something about a new analyser and everybody’s results showing higher levels so hey ho, we don’t know whats happening.
He does suffer with numb feet and slight tingling in his fingertips which can also be attributed to his Type 2 Diabetes which he was diagnosed with this year. He has put on a lot of weight and isn’t very active and its a bit of a battle to help him with his diet .
The latest results have pulled him down but on the upside his kidney/liver functions are all good and we are hopeful that a tweak in his treatment will help keep the light chains down.
Wishing you all the best,
Teresa
Hi Tony,
My husband has been on this journey since xmas 2016. Induction treatment didn’t work for him but he was lucky to get a trial drug – Ninlaro (Ixazomib) which worked almost immediately and got him ready for SCT. He is still on it as maintenance treatment, reason being as he took so long to respond initially. He was told in June that he is in complete remission (remission hadn’t been mentioned before)
Its been quite exhausting for him so he took early retirement. Sadly I’m not sure it was the right decision as he seems to be spending his days either sleeping or watching tv. He has put on a lot of weight which is causing problems too but he doesn’t seem to understand that. I think depression might be at the root of it. Still, we have our first grandchild due any minute and I think that will give him a new lease of life.
Good luck on your journey, there are so many good drugs available now and treatment is not too harsh on the body. The rest is up to you and how you cope with life. AS you have read, some people can get back on with work and life, if they’ve a mind to.
Teresa
Hi,
I tend to agree that we should let the experts worry about the blood tests but Myeloma UK have an info guide about blood tests
https://www.myeloma.org.uk/wp-content/uploads/2018/05/Myeloma-UK-Myeloma-An-Introduction.pdf
best wishes
Teresa
Hi,
My husbands transplant coordinator sent a schedule of vaccinations to his GP and they phoned him to raange the appointments. They initiated Flu and Pneumonia jabs too. Quite a different experience,
best wishes
Teresa
