Hi

Reply to Susie.

Re ct/mri. If your paraprotein levels are rising, then the team will likely start treatment based on this only, without the need for any imaging. Some people have a type of myeloma where the paraprotein level doesn’t rise in which case regular imaging can be helpful.

On a personal note though. I find it useful to k…[Read more]

I love the idea of those badges 😀😀
Great idea.

Well done on 10 years Linda. A definate reason to celebrate and thanks for posting it. It helps to know of these celebrations.

Take care all

Mike

Hi Jennifer

I’m just replying to question of how I was prior to sct. In short, I was pretty unwell, very painful to walk even short distances but I’d done well with the vcd treatment so the team wanted me to have an sct. The sct took a lot out of me and I lost a huge amount of weight, but the enforced rest in hospital really helped my back!! I…[Read more]

Hi Glynnis,
I really hope your husband will very soon get his pain controlled and be able to enjoy things again, even if it means a change to strenuous activities. You may have read above that I’ve had quite a few vertebrate fractures and collapses. I regard myself as very very lucky as my diagnosis and first fractures where 6 years ago. Yes I d…[Read more]

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 a…[Read more]

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…[Read more]

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

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 s…[Read more]

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

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 sympt…[Read more]

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

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 r…[Read more]

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 muc…[Read more]

Hi Helen and Mavis.

I’m doing okay thanks.

Helen I’m on a Panobinostat regime at the moment. I was on MUK 8, Ixazomid, but as usual with me it didn’t work. I’m finding Panobinostat, Velcade and Dex a bit challenging but it is keeping me stable at the moment. You can only have 16 cycles of it and unusually the cycles are only 3 weeks long. I…[Read more]

Hi Helen.

Well I survived our trip to Belgium without having any major problems. Though I had to go straight to the day unit before going home for my regular appointment. Privigen, blood tests and drugs pick up. I’m now on cycle 4 of MUK 8 the best I can say it’s doing is keeping me stable.

Sorry to read that Daratumumab is not working for you.…[Read more]