[MikejanulewiczParticipant]

Hi James

You’re right about the Zometa, it helps strengthen the bones.
Everyone with myeloma is different, some get lots of infections, some kidney problems, and some like me get compressed vertebrae or other broken bones.
All the above to a greater or lesser extent.
Nothing is a certainty.
So enjoy life as much as you possibly can.
Let us all know about the outcome//decision on kyphoplasty.
Good luck.
Mike

[MikejanulewiczParticipant]

Hi
I haven’t had this procedure Jame’s but I have had compression fractures.
The neurosurgeons saw me and considered kyphoplasty but I was referred a bit late (waiting list etc) so by then the pain was much better (morphine) and movements improving. I remember them saying the risk is that you make the diseased vertebra very very strong with the cement but that this can weaken/put pressure on the vertebra above and below.
All in all it took about 6 months for me to come off the morphine post fracture and be reasonably pain free.
I’ve since had several more compression fractures and each time I decided not to see the neurosurgeons for kyphoplasty as I knew things would improve. The only time I’ve had intervention is when my neck went and the neurosurgeons put in some scaffolding.
I hope this helps.
Kind regards
Mike

[MikejanulewiczParticipant]

Hi Sheena
Yep, fingers crossed for a good mri result.
At least you’re with the expert and someone who has skill with myeloma.
I hope that they will keep seeing you for reviews rather than sending you back to the gp again.

Hope the wait isn’t too stressful.

Kind regards
Mike

[MikejanulewiczParticipant]

Hi Sheena

Waiting and not knowing are our two enemies!
I hope the wait is very short to get some definitive answers. I hope your gp has sorted pain relief for you, normally they are very good at that.

My fingers and toes are crossed for you.

I’ve got my monthly appointment this Wednesday for results and more chemo. Usually means a couple of sleepless nights before the appointment.

Take care

Mike

[MikejanulewiczParticipant]

Hi Gala

That’s exactly what I was trying to say, but youve put it a 1000 times better than me!!

Take care everyone.

Mike

[MikejanulewiczParticipant]

Hi Sheena

I have my fingers and toes crossed for you for tomorrow.

Please pass a message to your daughter.
If the gp is hesitant to refer for any imaging, then ask the gp how they can be sure the myeloma hasn’t turned into a “non-secretory” form of myeloma, which would mean the paraprotein level would not show an elevated level therefore symptoms , examination, and imaging become the diagnostic criteria. This should help them request an mri or ct, I hope they would request this as an urgent request as well.

Pease let us know how things go.

Take care.

Mike

[MikejanulewiczParticipant]

Hi Sheena

Have you and your daughter been to see the gp yet??
I hope they have listened to you.

Please let us know how it went.

Take care.

Mike

[MikejanulewiczParticipant]

Hi
Welcome to our select club.

Never give up hope.
Life may have to be a little different but it may even be better.
And taff is right that everyone with myeloma is different

I’m now 55 and was diagnosed 6 years ago this month after bending over and fracturing a couple of vertebra. I had vtd, stem cell and since have relapsed twice. Each relapse has led me to have further vertebral collapse and an unstable neck requiring surgery. This sounds really scary but you just take it in your stride and slow down when the pain is bad.
Has it changed my life- yes. I retired from my job, thinking I hadn’t too long, the docs got that wrong!! Steadily I’ve built up my strength ang in the last 18 months have built two extensions on my house labouring for my builder friend, yes picking up bags of cement, yes totally against the docs advice. But, loving and enjoying life.
I’m also thinking of swapping my very sensible car for a sporty, fast jag!! I just need to check first that I can get in and out!!
I hope that I may have given you some hope that life can continue to be real good.

Good luck with everything.

Mike

[MikejanulewiczParticipant]

Hi peony

A gp is likely to see only one case of mm in their working lifetime so won’t be up on symptoms etc.
You need a full mri and possibly ct as well to fully assess your new symptoms. There is no reason why your go can’t order this (urgently).
Have you been seeing a myeloma specialist centre or just a local geamatoligy unit??i have felt much happier with the specialist myeloma unit I go to. Everything is more professional. The only drawback is it’s further to travel and the waiting time in clinic is long!!
Good luck. Let us know how it all goes.

Mike

[MikejanulewiczParticipant]

Sorry

Verry very good luck with the difficult decision.

Mike

[MikejanulewiczParticipant]

Hi vivbed

A truly individual and difficult decision.

The scientists put forward that the statistics show increased remission free interval, but I think very few scientists have had sct!

I was diagnosed 2013, had sct the same year, a tough tough time. Complete remission. Post sct took me a year to get back to my normal self.
Relapsed 2016, offered sct. I made the decision very early that ( for me) the recovery ate too much into my enjoymat of life, so opted not to have sct. Attained partial remission last August, unfortunately now relapsed again.

Maybe I made the wrong choice but I’m happy with the decision I made and also happy that my wife and children (20’s) didn’t have to go through the roller coaster. My family fully understand and supported my decision.

Very very

[MikejanulewiczParticipant]

Hi David
Sorry that you’ve relapsed. Hope the second course goes very smoothly for you. I decided not to have a second sct at the end of my treatment as the first one wasn’t good at all!
Good look with your treatment and hope it’s an absolute success.
Mike

[MikejanulewiczParticipant]

Hi susie

4 yrs ago pp 45

Dec slowly creeping up from 10, started treatment post operation at pp 18, now after 4.5 cycles down to 9.

Good luck with everything.

Mike

[MikejanulewiczParticipant]

Sorry
Don’t know what went wrong!!

Hope you get the gist!!

Mike

[MikejanulewiczParticipant]

Hi susie

Relapse, now velcade, that’s me!!

My pp’ started to increase a little 8 months ago, just single figures, but then I got neck and back pain and scan showed a broken neck vertebra which needed stabilising surgery. Had that, few week to recover then started twice hi Susie
i started on twice weekly velcade in jam after 4 years remission.
It’s not bad. No nausea, and I do get sick very easily. Minimal tiredness, but I do get painful legs for 2 days. I’m now on my 4th cycle but due to low platelets have the velcade weekly which is better. Para proteins have halved now, so doing ok.
Kind regards to all
Mike

Mike

[Author]

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