[zozo0921Participant]

Hi Everyone, my dad was diagnosed with MM on 27th September 2023. He is still waiting for an MRI scan.

Dad is in so much pain he’s on oxycodine but still not able to lay flat or sit up in a chair for long periods. Is this normal?

Dad has broken ribs and crumbling vertebraes

Dad is not able to walk anymore will this improve?

Any help, tip support as we start this journey is appreciated

Thanks in advance x

[mulberryParticipant]

Welcome to the forum zozo0921
It’s always totally traumatic when a family member is diagnosed with myeloma, and many patients have serious health complications when they are diagnosed. Fortunately for most of us, our health improves as our myeloma levels reduce during treatment.
Mobility problems are common as 80% of us have bone lesions at diagnosis, often in the spine. Although the bones never return to normal, gradually the lesions scar over and pain either goes away, significantly reduces, or a successful pain management is put in place.
One of my friends was in a wheelchair for 6 months after diagnosis. She has since been digging an allotment, gardening, leading a walking group. For the past 18 years she has been very active.
Keep hopeful for your father.
Best wishes, Jane

[squirrelParticipant]

Hi zozo0921
So sorry to hear your Dad has been diagnosed with myeloma.
I know when I was first diagnosed everything seemed very sereal and somewhat still does now.
Mulberry’s reply above is correct in that your Dad should feel some relief as he undergoes a treatment plan although some side effects for some people aren’t very nice.
Hope he gets his MRI soon to move forward with treatment.
All the best. X

[tony642Moderator]

Hi there,

My Myeloma diagnosis came as a result of severe back pain as I had 2 vertebral wedge fractures in the thoracic region of my spine. I understand what pain he must be in, but they will probably put him through a pain management clinic to find the correct level of pain control. after which it should be a bit more manageable.

The additional problem I had was that Myeloa had given me kidney failure for which I needed dialysis. Oromorph is a prevalent form of pain relief for bone pain but is harmful to Kidneys if you already have problems with them. Therefore you need to know if his kidneys have been affected. If so, there are a range of drugs that can further damage them (such as ibuprofen and Diclofenac) and you must tell anyone prescribing the drugs about any possible damage to your kidneys. There are alternative drugs available (such as Oxynorm instead of Oromorph) but these are not routinely prescribed unless there is a need.

However, good pain relief is available so long as you let your medical team know about it. Don’t be shy about asking for help. Hope this helps.

Regards, Tony

[zozo0921Participant]

Thank you all for your kind support.

I feel my dad is deteriating, he now has an infection in his gut I believe it’s c diff, he’s very tired, very low in mood, weak, not eating or drinking, he has low potassium and phosphate levels and is now on oxygen again.

I just hope he fights this infection 😢

[mulberryParticipant]

I hope your dad starts recovering. It’s clearly a very worrying time for you. Many of us are initially very poorly, fortunately most of us pull through. I hope your father has had his MRI now so the extent of his bone issue is known so that a treatment plan & effective pain management can be put in place.

[zozo0921Participant]

Dad appears to be alot brighter today, the consultant has increased dad’s pain relief and they have confirmed treatment will start tomorrow.

Treatment will be DVTD and SCT

Its such a positive having a plan ahead to help dad get back to being well again.

[squirrelParticipant]

@zozo0921
Pleased to hear you now have a treatment plan for your Dad and he is a bit brighter.
I also had DVTD – 4 cycles and have my first SCT scheduled for next week.
Wishing you all the best for the planned treatment.

[zozo0921Participant]

@squirrel

Thank you for your kind words

Any advise for treatment for me to pass onto my dad?

[squirrelParticipant]

@zozo0921
Hi
I personally found it quite difficult as I was already on painkillers before my myeloma was diagnosed so I felt reasonably ok before but the treatment made me feel worse. Whereas your Dad is already feeling a bit better due to his pain now being managed.
My advice while going through the treatment is enjoy all your good days as much as you can do hopefully it will put the not so good days into the background.
Keep asking about anything you are unsure of – there is so much to take in. A lot of it still confuses me even now.
I found asking questions on here has been very useful for me.
You haven’t said how old your Dad is
I was diagnosed in April this year and 64.

[zozo0921Participant]

Thank you.

Dad is 63

His pain has been increasing so much and his pain relief just keeps getting increased but the consultant has advised that his pain may get worse before it gets better.

They are going to give him zometa

Fingers crossed all goes well.

Good luck to yourself for your SCT

[fred66Participant]

Hi
Really positive your Dad now has a treatment plan.
Once the DVTD does its job, the SCT will hopefully make things alot brighter.
My 1st SCT gave me 7 years of very good health.I then had another which was effective for 18 months but by then, Lenolidomide had become available in certain ,thanks to Myeloma UK.
Wishing your Dad all the best.
Fred

[mulberryParticipant]

When I started treatment I assumed the preoccupation with myeloma, the toll treatment was taking physically and mentally, was the new normal, would more or less go on forever.
However once the myeloma levels had stabilized and my induction treatment (& in my case SCT) were over, I returned pretty much to my old life, and it stayed this way for over 4 years.
My advice to your father would be to expect myeloma & treatment to take over his life for around a year from diagnosis, but to look forward to a long life beyond that when myeloma will be in the background rather than centre stage.

[paul59Participant]

Hi I have just been diagnosed (26/10/23) I’ve not had any symtoms, that I have noticed, but had the home marrow test and scans and they say I have some lesions in my shoulders.
I don’t know what to expect to happen but chemo has been mentioned. I try not to let family or partner see that it is worrying me.
Any advice would be gratful.

[fred66Participant]

Hi Paul
Sounds like they found it fairly early which is positive.
I would imagine Chemotherapy and steroids will be prescribed, which sounds scary but they are normally well tolerated and you will get used to taking them. This will also help slow down or stop anymore lesions. The medical team will explain about side effects and other medicines that came help with them,

You might have a Stem Cell Transplant {STC} once the Chemo starts to work. Again. your medical team will explain the process. This can be really effective and long lasting.

Its so early in your diagnosis so you will probably not take all the information in. Keep asking questions even if they are the same as before. The medical teams expect it.

Protecting the family from your worries is what we do, My advice is contact Macmillan, They can offer lots of support including counselling which is where you can express you worries and fears. They are there for family too.
It is such early days for you Paul. It will take time to come to terms with your diagnosis. With the help of the support from this site and other support networks and of course your medical team, you will soon adjust to living with a Myeloma diagnosis.
Best wishes, Fred

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