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]

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]

Hi Stanley.

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]

Hi Stanley.

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]

Hiya.

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]

Hiya.

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]

Hi Ren, I was in isolation for two weeks following the SCT, was released home, felt really weak and wobbly, had to use a stool in the shower and took ages to do anything, putting socks on was difficult, i found the stairs a bit challenging! It took a few weeks before strength improved, I guess the drugs were clearing my system. I had clinic…[Read more]

Evening Ren, I am 72 and had my second stem cell transplant last March. I had 26 months remission after the first transplant, during that time I took no drugs, had no treatment other than zometa infusions every three months, we lived life to the full, travelled a lot and enjoyed life, we fully intend to do the same again. The proceedure is hard…[Read more]

Hi Annlynn.

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

Hi Mavis & Annlynn.

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]

Hi Peter.

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

Hi Nippy.

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]

Hi Mavis.

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