Thanks Rebecca.

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]

Thanks Rebecca.

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]

Hi Susie.

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]

Hi Jeff.

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

Hi David.

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

Hi Susie

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

Hi Mark.

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]

`Hi.

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]

Hi.

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

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

Hi.

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

Hi Maureen.

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

Hi Susie

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]

Hi Helen

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]

Evening Sonia, no I don’t understand why two consultants should have differing opinions, it does annoy me, particularly when myeloma uk print literature on the subject.

What part of the country do you live in and which hospital does your husband attend? I live in Leicestershire and attend the Leic Royal Infirmary, I find them superb, under…[Read more]

Hiya Sonia, I had my second SCT in March this year. I am 72 years age. I had my first SCT 4 years ago, having had 6 months of treatment on the myeloma XI trial. After each SCT  my consultant gave me a pre printed form listing all of the inoculations that I was to have. I have just had the second round, that is 8 months next round due at 12…[Read more]

Hi Dean,

I’ve not been on the site for a while but I had my SCT at about the same time as Rebecca, just about everyone here who made it to SCT managed it and was back home within weeks, it isn’t easy but it is doable. Don’t worry if it is not a great success because there are other options. Mine didn’t really work, the medics were talking about…[Read more]

Hiya Taff, sorry to have to welcome you to this “happy band” I think that the bone marrow biopsy is the last test needed to confirm yes or no to myeloma. I attend the Leicester Royal Infirmary, when having a biopsy the patient is given gas and air, so you are as high as a kite and not aware of anything going on, you can but ask!

I like your…[Read more]