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]

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]

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]

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]

I’ve not had any serious side effects with Pomalidomide and Dex and I’m currently in the middle of cycle 37.

Hopefully it gets to work really well for Ian and he achieves remission.

Every day is a gift

Andy xx

Generally treatment isn’t restarted until other indicators show that your myeloma is affecting you. If all other indicators don’t show any problems i.e. Your bloods don’t go off or you don’t experience bone pain/fractures etc they will hold off on treatment.

Some people can live quite happily with high PPs whereas others get into…[Read more]

It’s good to hear from you again. Glad you managed your trips to Italy. Sorry to hear about your troubles with sepsis I also had a recent week long stay in hospital due to sepsis and had all sorts of antibiotics pumped into me which obviously did the job.

Can’t remember if I told you about my scalp problems at the InfoDay, bloody chemo…[Read more]

Hope your trip to Gran Canaria goes well. We’re back home now, got home Sunday night, getting back into the old routine of hospital appointments etc.

Got to say I do find getting away really is therapeutic and gives you chance to bury thoughts of MM for a while.

Hi Annlynn.

A weather update. A couple of days before we got to…[Read more]

Hope your trip to Gran Canaria goes well. We’re back home now, got home Sunday night, getting back into the old routine of hospital appointments etc.

Got to say I do find getting away really is therapeutic and gives you chance to bury thoughts of MM for a while.

Hi Annlynn.

A weather update. A couple of days before we got to…[Read more]

Unfortunately steroids can cause our skin to become thin, amongst other side effects it causes, making  it easier to tear and bruise. If you’re on anticoagulants too, which you probably are since you’re on Revlimid, they will cause you to bruise easily too.

I’d mention your concerns the next time you’re at the day unit/hospital.

Every…[Read more]

Unfortunately steroids can cause our skin to become thin, amongst other side effects it causes, making easier it easier to tear and bruise. If you’re on anticoagulants too, which you probably are since you’re on Revlimid, they will cause you to bruise easily too.

I’d mention your concerns the next time you’re at the day…[Read more]

The weather can be a bit hit and miss at the end of September here in Kefalonia. Kefalonia is one of the furthest north of the Greek islands. The southern most islands will be ok though.

Andy xx

I’m writing this whilst relaxing by the pool! Yeah I’ve made it to Greece a bit different from this time last year when I was in ICU!

I’m now on cycle 35 of Pom & Dex I think. My PPs have dipped just under 19 so hopefully I’ve plateaued again time will tell. I’ve been off Zometa for a couple of years now due to ONJ but when I…[Read more]

My understanding of pet scans is that they’re quite good at showing up active lesions but should be seen alongside mri scans for a complete picture.

Every day is a gift.

Andy

It sounds to me like your sister is depressed.

Chemo can take an awful toll on the body making you susceptible to all sorts of problems and the thought of going through a SCT, which can be bad, will be playing on her mind and adding to the problems. Does your sister have access to a counsellor? They are a great help.

Anyway those are…[Read more]

It’s great to hear from you. I hope everything is as well as it can be with you. I’m not on here very often myself now either.

My PPs are determined to keep slowly rising so I guess another trip to Greece is in order whilst I still can.

Every day is a gift.

Andy XX

I haven’t been on here for a while so here’s a little update of my     journey.

Since my little episode with pneumonia my PPs have been creeping slowly upward. I got my latest results today and my PPs are now 19.2 all my other results were good so my treatment is staying the same.

Unfortunately I also have a little lump on my head t…[Read more]

There still a lot of discussion going on about the benefits of Zometa at the moment. Some claims have been made that it has an anti myeloma effect but that hasn’t been verified.

I’d been on Zometa for just over two years before I had to stop it due to ONJ. At last years info day I asked if I would be able to restart Zometa when my ONJ…[Read more]

I would recommend the counselling.

It’s a massive blow to be told you have cancer and then be plied with lots of pill which basically poison us. I went through a hard time after being diagnosed and it took time for me to get back to some sort of normalcy.

Quality of life for me is the main thing and as he is in remission there should be…[Read more]

Had a wonderful time in Kefalonia the weather was very kind though the wind did get up for a couple of days. Now recharging my batteries for our next trip. We’re of to Belgium in a few weeks for a long weekend so I’ll probably have a few Belgian beers Tony whilst we’re there.

Every day is a gift.

Andy xx

No one knows is the answer to your question. However the chance of getting to remission with Velcade, in my view, and being drug free again is worth going down the drug route. Obviously that’s only my point of view. There is always the argument of quality over quantity of life that must weighed up.

I can’t really recall many problems…[Read more]

Thanks for all your good wishes.

I’m actually soaking up the vitamin D as I write this beside the pool in sunny Kefalonia. It’s lovely and warm but not too hot. A beer or two also help keep the temperature just right.

Thanks for that compliment Annlynn. It’s very humbling to know I can inspire someone but also very satisfying that I’m…[Read more]

I’m doing ok though it looks like my treatment is starting to fail.

I’m actually sat in the sun on the Greek island of Kefalonia writing this post. It’s our first trip abroad since my little run in with pneumonia.

As regard to the blue badge I think every council has different qualifying criteria so your local council maybe the place…[Read more]

I started my 31st cycle today after my monthly consult with my specialist nurse and picked up my drugs too. Unfortunately my PPs have continued their upward trend increasing another three to seventeen. So I think some serious head scratching and decision making will soon be on…[Read more]

If you have the higher rate mobility award on DLA and I suppose PIP you automatically qualify for a blue badge.

Every day is a gift.

Andy xx

we’ve been using nowicantravel for a few years and have had no trouble with them. We do it over the phone as most insurance websites aren’t geared up to looking at individual circumstances. We just got our insurance through them for a week in Greece that covers all my Myeloma and my wifes diabetes for £58.

When we first started…[Read more]