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???

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]

Well worth a read it’s our future.

http://www.pharmaceutical-journal.com/news-and-analysis/features/multiple-myeloma-an-expensive-revolution/20203042.article

Every day is a gift.

Andy xx

Well worth a read it’s our future.

http://www.pharmaceutical-journal.com/news-and-analysis/features/multiple-myeloma-an-expensive-revolution/20203042.article

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]

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]

as Jan says there is no hard and fast rules about the level of PPs when to restart or start treatment. PPs are only one factor out of several that are taken into account.

I have read posts were a tiny rise in PPs, as little as 0.2, from 1.5 has caused serious problems and I’ve also read posts of patients having well over a reading of…[Read more]

I’m doing ok at moment, just returned from a week in Kefalonia, I’ve just started cycle 3 of MUK 8. Not much movement on the PPs front yet. I’m feeling ok though just got the usual UTI that seems to be a constant companion of mine. Hopefully going to Belgium later in the month.

I’m glad that the Daratumuab is seemingly keeping you…[Read more]

Deb x

Are you on Pomalidomide or the MUK 8 trial? On Pomalidomide my PPs came down slowly, I think, over the first few cycles. To about 8. Then gradually rose to the mid teens where they hung about for about eighteen months then began to rise again.

When I as on Revlimid nothing had for the first few cycles then they added Cyclophosphamide…[Read more]

The Perfect Pair is a wine tasting event with a difference…and we hope that you or your friends/ business colleagues might want to get involved. The event is being run by me, Deb Gascoyne, and I’m a…[Read more]

well after 40 cycles of Pomalidomide I’ve had to say goodbye to Pomalidomide. It’s been a good journey with minimal side effects though there have been a couple of serious bumps along the way. I’m due to start a trial early next month after a little holiday in the lakes. Fingers crossed the trial works and I get a bit more time to have a…[Read more]

Glad to hear  from you. I too are at the end of my Pomalidomide journey. I managed 40 cycles before it was stopped. Bendamustine or a trial was mentioned as my only options. Two trials were mentioned MUK5 and MUK8 unfortunately MUK5 had reached its target number of trialists, I think that was the one you’re on Helen, but I…[Read more]

Unfortunately when the forum was changed a few years ago it was virtually unusable for quite a few members. Messages wouldn’t post the kept disappearing and there was logging in problems too. These problems took time to resolve and by the time they were resolved an awful lot of members had move on to the Facebook group.

I agree with…[Read more]

Welcome to the Myeloma club. I’m sorry you are joining us as myeloma is such a horrible disease. I hope the biopsy went ok and wasn’t too painful. I’m due one in the New Year.

The first thing you’ll notice is that no two patients have the same journey treatment and outcomes are very much an individual thing. There’s nothing much I can…[Read more]

Firstly I must tell you it’s my Dex night so I may ramble on a bit.

In my chemo muddled brain I seem to remember talk of adding to posts how many times that particular post had been viewed. I may of imagined that but I personally would think it would be a good idea as it would help posters realise that what they write is not being…[Read more]

I was prescribed tramadol by my GP for my spasms.

Every day is a gift.

Andy

I don’t know what is available to me till I see my consultant on Thursday. The discussion with my specialist nurse was just a bit of speculation. I’ve only had a response from two drugs to date, Revlimid and Pomalidomide, nothing else has worked for me.

Hi Jan,

My scalp is healing nicely thanks. Though my thigh where they took the…[Read more]

https://www.google.co.uk/amp/www.mirror.co.uk/news/uk-news/marathon-runner-who-discovered-incurable-9362608.amp?client=safari

Every day is a gift.

Andy xx

What a lovely post it’s given me a real boost thank you xx.

Well to my latest news. My PPs have continued to rise and all discussions are now about what happens next. My specialist nurse and I had a discussion about where I maybe heading when I picked my latest round of drugs up. It seems like there may be a few options open to…[Read more]

What a lovely post it’s given me a real boost thank you xx.

Well to my latest news. My PPs have continued to rise and all discussions are now about what happens next. My specialist nurse and I had a discussion about where I maybe heading when I picked my latest round of drugs up. It seems like there may be a few options open to…[Read more]

The hospital were I get my myeloma treatment charge £3:00 for 12hours after a 20 min free period. The other hospital I’m frequenting lately is free for blue badge holders which I have.

I get my bloods done at my GPs practice now to save a trip to the hospital and £3:00 lol so now I’m only at the hospital once every 28days. Unless I h…[Read more]

I didn’t know until recently that it was a notifiable condition. Fortunately when I was on Velcade, two cycles, I didn’t get it bad just a little loss of sensation in my fingers and toes.

Every day is a gift.

Andy xx

Can’t think of myself as a hero! David. I’m just doing whatever it takes to get by. But I thank you for the sentiment it gave me boost.

Every day is a gift.

Andy

Yes I’m still on Pomalidomide and Dex currently on cycle 37 ..

If you want to find out what I’ve been up to lately I’ve posted in the Treatment group .

Every day is a gift.

Andy xx

Dex is an evil drug and affects us all a little differently the ups, downs and sleepless nights are well documented. I take 40 mg every Tuesday morning. I’ve been taking Dex for over five years now and still get caught out being a bit short fused, cold callers be aware, on my down days even though I tell myself it’s the Dex!

Every day…[Read more]

Just copied this from http://www.gov.uk

Peripheral neuropathy and driving

You must tell DVLA if you have peripheral neuropathy.

You can be fined up to £1,000 if you don’t tell DVLA about a medical condition that affects your driving. You may be prosecuted if you’re involved in an accident as a result.

Car or motorcycle licence

Fill in form…[Read more]

Just copied this from http://www.gov.uk

<header class=”page-header” style=”margin: 0px; padding: 0px; vertical-align: baseline;”>
<div style=”margin: 30px 0px; padding: 0px; vertical-align: baseline;”>
<h1 style=”margin: 0px; padding: 7px 0px 13px; vertical-align: baseline; font-family: nta, Arial, sans-serif; font-size: 48px; line-height:…[Read more]

As far as I know if you have peripheral neuropathy you have to inform the DVLA it doesn’t automatically bar you from driving though I think not informing them could have consequences regarding insurance etc. It’s my Dex night so I’m going to do a bit of research and will hopefully get back with what I can find out.

Every day is a gift.

Andy

It’s my Dex night and it crossed my mind I’ve been neglecting the forums. So I thought I’d fill you all in on what’s been happening since we returned from Greece.

First of all I had to have my head checked out, scalp not brain, and it was decided I needed a biopsy. They were pretty certain what it was and preempted the results by…[Read more]

It’s my Dex night and it crossed my mind I’ve been neglecting the forums. So I thought I’d fill you all in on what’s been happening since we returned from Greece.

First of all I had to have my head checked out, scalp not brain, and it was decided I needed a biopsy. They were pretty certain what it was and preempted the results by…[Read more]