[andygParticipant]

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

[andygParticipant]

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

 

[andygParticipant]

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

[andygParticipant]

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 is a gift.

Andy

[andygParticipant]

`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 CN1 and send it to DVLA. The address is on the form.

https://www.gov.uk/peripheral-neuropathy-and-driving

I guess the safest thing to do is inform the DLVA I’m sure most people will still be able to continue to drive once the medical details have been check.

I hope this helps.

Every day is a gift.

Andy

 

 

• This reply was modified 8 years ago by  andyg.

[andygParticipant]

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

[andygParticipant]

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

[andygParticipant]

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 trouble with only low PPs as is often quoted Myeloma is a very individual disease.

Every day is a gift.

Andy xx

 

[andygParticipant]

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 brain, anyway I’ve been diagnosed with Squamous Cell Carcinoma! Needed a second operation and skin grafts which I had twelve days ago. My head looked like Frankenstein’s monsters head with over 30 staples and loads of stitches.

I’m currently on cycle 37 of Pomalidomide not sure how much longer I will get out of it as my PPs are creeping up though so far my other bloods are behaving themselves. Seems we are at a very similar stage in our treatments.

Every day is a gift

Love Andy xx

[andygParticipant]

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 Kefalonia they had some really bad storms. Closed the airport for a while. When we were there the weather was great. The day after we left they had a similar storm and a minor earthquake.

Maybe our luck is changing lol.

Every day is a gift.

Andy xx

• This reply was modified 8 years, 2 months ago by  andyg.

[andygParticipant]

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 day is a gift.

Andy

• This reply was modified 8 years, 2 months ago by  andyg.

[andygParticipant]

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

[andygParticipant]

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 raised my fears of not having it at last years Info Day I was told even when Zometa is stopped it stay in the bones for a long time.

I always convince myself every rise in PPs is just a blip, mine have blipped up from 8.5 to 18.6 now lol, and that next month they’ll be down again. As far as I know they do restart treatment, or in my change treatment, until there’s other indicators – eg blood tests start to go off.

Anyway I hope both of you are just having blips.

Time for a beer I think – Yamas

Every day is a gift.

Andy xx

[andygParticipant]

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

[andygParticipant]

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 my initial thoughts. I’m sure others will have other views.

Every day is a gift.

Andy xx

 

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