[jaydee63Participant]

Hi
I’m a newbie so I’m hoping I’m posting correctly!!
I apologise for the long post.
My lovely old dad was diagnosed with Multiple Myeloma in January this year. He was started on a trial treatment but after a few days he was not eating and constantly sleeping, breathless and no energy. He was taken into hospital with very high calcium levels and he also had Neutropenic sepsis.
He was treated for both but then had extremely low calcium, he was also treated for that.
We thought we were going to lose him but thankfully not.
He was taken off all his treatment for 2 weeks and he was back to his old self. He was then put on the same medication but without the trial drug and again after a couple of days he had no appetite or energy, constantly sleeping and was breathless.
He was taken into hospital again and was told his Hemoglobin levels were low and again had neutropenic sepsis.
After treatment he was allowed home ( 9 days ago)…but he was still not well.
My mum phoned his GP yesterday and he said he shouldn’t be like he is so he phoned an ambulance. He was taken to A & E but they couldn’t find anything that was causing the symptoms that he had so they sent him home.
The general medical team phoned my mum and said someone from the haematology team would call her but they never did. He is still not on any cancer medication.
She is at her wits end and doesn’t know who to turn to.
She says my dad is just laying there fading away.

[mulberryParticipant]

Im sorry that your father (& therefore your family) are having such a terrible time with myeloma at the moment.
Does your Dad have a named myeloma consultant and/or named myeloma nurse? It is normal for us to have both, even if we are not as poorly as he currently sounds. Your mum and dad need advice from his doctor quickly. Although his dr and nurse wont be at the hospital 24 hours, there should be a Haematology team covering 24 hours. Usually on treatment we get given a card with a 24 hour emergency number to call. Check with your mum and dad whether he was given one when he startd on the trial drug, and use it.
If you are unhappy about the response /lack of response you are getting,during working hours ask the patient liaison (PALS) service to intervene on your dads behalf.
The drugs that we initially take to get the myeloma under control can affect patients in the type of ways you describe, but usually dosages can be altered, or frequencies of doses reduced, to make the side effects more manageable, or other drugs used.
I hope things settle down for your dad, best wishes.

[jaydee63Participant]

Hi Mulberry
Thanks for the reply.
He does have a card and a named consultant. He has only seen the named consultant once but has seen two other consultants as well.
I think as a family we are still trying to get our heads around the diagnosis and a little frustrated that we can’t seem to get any answers.
My dad has pain in his back and one consultant said it was the myeloma in his spine, another said he didn’t have myeloma in his spine and it was degenerative. It’s all a bit confusing!!
I will pass your advice on to my parents.

[mulberryParticipant]

It is important not to despair, many myeloma patients are very poorly at diagnosis and/or during induction treatment. As you’ve probably heard, myeloma tends to be a unique ‘journey’ for every patient, but many patients belie their initial fears or indeed their doctors prognoses. One of the members of my local myeloma support group was in a wheelchair for 6 months, but 16 years later is able to single handedly manage an allotment & walking holidays. Another almost died 9 years ago, her family having been advised to come to the hospital to say goodbye. Several have myeloma which has never completely responded to treatment, but have stabilised to a minimum, stable level. One remained in this state for 9 years before needing new treatment. Some have initially gone through a number of treatments in quick succession before finding one which has worked for them.
I know that the outcome is not good for all myeloma patients, but hope that your dear dad starts to feel better soon and that your mum and dad have managed to speak to someone in their team today, before the weekend.
Best wishes, Jane.

[davidainsdaleParticipant]

Hello Jaydee63

Sorry to hear that your dad has been diagnosed with myeloma and that you and your family are having a rough time just now.

I would certainly agree with Jane’s comments above and in my role as support group leader for a myeloma group in the North West I have met a number of patients and families in similar circumstances to yourself. They say that you should not suffer in silence' and you only get what you ask for’. Your haematologist clinical specialist nurse should be able to advise and provide access to the mutli disciplinary team. COVID restriction seem to be making everything more complicated just now so you may need to be persistent.

Hope this helps
David

[jaydee63Participant]

Hi
I’ll be ringing them later today to see if they have managed to get anywhere.
I think one of the problems is my dad is very deaf and when he’s in hospital he doesn’t hear what the doctors are saying. I also don’t think he’s the best of patients… he doesn’t like hospitals!!
Its nice to be able to talk to people about it.
Thanks 😊

[jane368Participant]

Hi Jaydee63,
I was reading your post and struck by the similarities Of our situations. My dad was in pain for many months and sent for physio amongst other things. After a fall a few weeks ago when he fractured his hip in several places he was diagnosed with MM. We were also very shocked. He’s 85 years old and quite bewildered about it all. He is also very deaf but won’t have a hearing aid and also a terrible patient. He had his hip made stronger with metal rods but he is still very immobile. He was discharged from hospital with only a walking frame to help him. As he is really intelligent and aware of everything obviously all communication goes through him but then he hasn’t heard what was said so we’re all in a bit of a fog!
The same as you it’s nice to be able to message people who understand! My dad is a widower so me and my sister are doing everything for him and it’s all very overwhelming for all of us!
Hope things are going better with your dad!

[jaydee63Participant]

Thanks for all your replies.
After another week in hospital, my dad came off of all his Myeloma medication, his choice.
He is doing extremely well. He is obviously still ill but is like his old self again. His appetite improved and he has gained weight.
He was prescribed anti depressants and they have been a major help.
Best wishes to you all 😊

[jaydee63Participant]

Thanks for all your replies.
After another week in hospital, my dad came off of all his Myeloma medication, his choice.
He is doing extremely well. He is obviously still ill but is like his old self again. His appetite improved and he has gained weight.
He was prescribed anti depressants and they have been a major help.
Best wishes to you all 😊

[Author]

Posts