Thank you both very much for sharing your experiences. Dave’s reaction is not listed in the info for the drug and seems to have come as a surprise to his consultants.
We have told them of our worries about continuing with the drug but we’re told to wait for the bmb results.
Fatigue seems common with most Myeloma treatments, Dave’s has worsened as time goes on but this is the first time in 9 years that he’s had such a bad reaction, previously just skin rashes which eased quite quickly.
Please keep me updated with your progress, both if you.
My husband has been hit by several respiratory infections this year, was in hospital twice in January and has been in hospital since 10th February. It was decided to give him his first dose of Elranatamab on 25th February when they felt he was well enough to start treatment. The very next day he was hit with a virus picked up in the ward.
Two weeks later he became very unwell and was given the antidote to Elran. He felt better within the hour. They gave him a bit of time to recover and then administered the first dose again. By the next day he was extremely ill and was taken to ICU with kidney failure.
After two weeks in ICU on dialysis his kidneys seem to have recovered and he is back in oncology. He has lost so much weight and can barely move, he cannot get out of bed. The doctors are saying he is recovering well and will need physio.
A BMB is planned for the coming week to decide the next stage in treatment – his consultant is keen to continue with Elranatamab as “it is working”. We can’t delay treatment for much longer as Dave is high risk and hasn’t been on regular treatment since last summer.
We have the theory that, as Dave’s Myeloma was “rampaging” the Elran got to work and started to kill the Myeloma cells releasing protein into the blood at such a high rate that the kidneys couldn’t cope. This is something the registrar is considering too. His consultant is not one for explaining things so I am looking forward to meeting the registrar to discuss.
We are frightened to continue with Elranatamab but perhaps the worst is over and it won’t have such a devastating effect from the next dose.
Has anyone else suffered in a similar way?
Hi,
My husband reacted to King Charles’s statement about cancer, saying he knows how much I support him.
To be honest the Myeloma treatment, appointments, prescriptions, are all manageable. It’s the diabetes that causes the most problems as he seems unable to accept that it’s important and as much as I try to give us a healthy diet he fights against it. We went on a course a few years ago when he was first diagnosed with diabetes and I’ve asked him to have another look at it to make life easier.
We shall see.
Hi lablady,
It really does hit the partner as much as the patient. Your life revolves around appointments and treatment.
When my husband was first diagnosed he was able to continue working but the following year, after his SCT he could only manage part time and then had to take ill health retirement. He was never very hands on at home but he suddenly became very dependent on me.
I understand that 8 years of treatment is debilitating for him (he’s not achieved remission) but he won’t even make a cup of tea although he can get himself a beer from the fridge!
I do wonder sometimes when people talk about the burst of energy they get on steroids days and they manage to tackle the ironing or decorate a room and I think why doesn’t my husband do anything.
I admit I do feel resentment sometimes and then I feel guilty.
We have to remember that we have a life too and take enjoyment from the little things. For me, it’s the daily dog walk, spending time with the grandchildren. Last year I had two little two night camping trips with my daughter and granddaughter which I’m hoping to do again this year. My husband didn’t do so well without me and my other daughter had to keep him an eye on him and I had to keep phoning him to check he was staying hydrated. But the pleasure and relaxation I got from those trips was immense. I don’t feel guilty that I had four days away from him.
Try to think positively. Your life is not what you were hoping for so you need to find another way to find enjoyment .
All the best
Teresa
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
