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]

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

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]

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]

Hope the wait isn’t too stressful.

Kind regards
Mike

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]

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

Take care everyone.

Mike

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]

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

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]

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]

Have you been diagnosed
with multiple myeloma???

Verry very good luck with the difficult decision.

Mike

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,…[Read more]

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

Hope you get the gist!!

Mike

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.…[Read more]

I don’t reply very often, but I do look!!

Myeloma is very scary when you first get it, and remains so, but I do think it is viewed as a treatable and controllable (but not curable as yet ) chronic illness.

Do not panick about the timescale, it does seem forever, but it’s ok.
However start shouting loud if you get increasing pain…[Read more]

You really have done v well. An sct is truly major, don’t underestimate the strength this will have taken. I hope that your day 100 bone marrows are clear, and I hope you both have as good a remission as myself, and I hope you both beat my 36 months.

Take things easy, and have a great 2016.

Regards

Mike

I really like the sound (not the look probably) of man size nappies, I was never offered these but could have done with them on a couple of occasions.

How many days post sct now???, I was out at +19, but did have a bit of an infect…[Read more]

I think you two are going to be in a race to be the first out of hospital !
You’re both now on “day 1” ie first day after stem cells going back in.
I was hugging the toilet very hard at this point, I always react to high dose chemicals, I remember that high dose Pernod was particularly bad.
Dino I think your doing really…[Read more]

It’s great that you are linked to the…[Read more]

I had sct 3 years ago and just relapsing.
BUT have had a fantastic last 2 years.

Keep smiling.