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
Hi Susie.
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 had cleared up and was told since Zometa stays in the bones a long time there was no need to rush back to it and because I had developed ONJ Zometas benefits may be outweighed by the risks to me. Statistics apparently show that 2-3% of Zometa patients get ONJ. As I didn’t have any infections I was advised not to have any intervention as studies had shown this wasn’t the most effective way to to treat me so I was just told to maintain good oral hygiene. Lots of mouth washes of warm salt water and not the commercially available ones as most contain alcohol and have a cancer of the mouth risk!! I still have a tiny bit of dead bone and hopefully that’ll fall out before my next appointment at Max – Fac and I’ll be signed of that problem.
Every day is a gift.
Andy xx
Hi Sue.
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 no reason why he can’t stop treatment. It sounds like he is on a maintenance regim probably as a continuation of the trial. Talk to his medics as time off drugs can be a big bonus. So I’ve been told – I’ve not been off them since diagnosis.
Every day is a gift.
Andy xx
Hi all.
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
Hiya Susie.
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 when I was tried with Velcade though it is known to cause peripheral neuropathy though this is less of a problem now that it’s given as an injection. When Velcade works it works very well and quickly so I’ve been led to believe.
Hopefully your PPs will stabilise and your need to start treatment will be delayed a lot longer.
Every day is a gift.
Andy xx
Hi all.
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 able to help in any small way.
Ok it’s time for a beer – Yamas.
Every day is a gift.
Andy xx
Hi Susie.
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 to start.
Time for a beer now – Yamas
Every day is a gift.
Andy xxx
Hi Susie,
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
Hi Hillbum,
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 traveling abroad after my diagnosis we we’re quoted over £1000 or refused cover. You have to dig around and unfortunately it’s best to do it by phone and not via the Internet.
Every day is a gift.
Andy xx
Hiya all,
Well here I am as promised posting on my Dex induced sleep deprived night! Though I maybe jumping the gun a bit as it’s not even midnight yet.
Anyway a little update – Last week I was feeling a little under the weather Hmmm more under the weather than normal I guess I should say. Anyway I had a cold and a cough but that’s no big deal though at the back of my mind of course my recent run in with pneumonia was nagging away. I got up Friday took my temperature as normal 38.2! So I rang the day unit explained my problems and warned them I’d be there in 30 minutes.
When I got there my Stats where taken and confirmed my high temperature. A cannula was inserted and lots of bloods were taken and a urine sample given. My consultant checked me over and thankfully said my chest was clear. We discussed the options and the one with me not being admitted but going home with a big bag of antibiotics for me to self administer and for me to check all my stats at least four times a day with the promise I’d ring in if anything untoward showed up. My consultant didn’t want to admit me due to what happened last I was admitted – pneumonia. Next I was hooked up to a saline infusion, for three hours, and had my first course of antibiotics. Saturday night before bed and I checked my temperature as usual and was still the wrong side of 38 and we were starting to get a bit, a lot, worried and resolved to call in if Sunday morning brought no improvement. Sunday I took my twice! because I didn’t believe it the first time my temperature had returned to normal phew!
Went to the day unit on Monday to give up some more blood and was told nothing was showing up yet from previous tests. Got a phone call Tuesday to tell I had UTI and that they were checking with microbiology to see if the antibiotics I was on were appropriate. If I didn’t hear back they were. I didn’t hear anything.
Last weekend I was supposed to sort out our trips to Kefalonia and Ostend but I had other things on my mind so that’s this weekends job now – fingers crossed. Had my first beer or two tonight so I guess I’ll class myself as recovered I’ll find out next Tuesday officially.
Well that’s it for now folks a Dex inspired ramble about my past week another shortish post lol.
Every day is a gift.
Andy xx
Hi Peter,
if I have ANY problems or worries I call the day unit, or at night the open access number, and let them know I will be shortly paying them a visit as I did last Friday. They encourage us to do that. Luckily I only live 10 – 15 minutes away so it’s no hardship for us.
I hope everything gets sorted out on Tuesday for you Peter.
Every day is a gift.
Andy
Hi,
My advice is simple AVOID anyone with any sort of infection it’s not worth the risk. For your information infections are the biggest cause of death amongst myeloma patients.
Every day is a gift.
Andy
Hi Peter,
Sorry to hear that you had to stop taking Pomalidomide. As I said previously it’s a bit of a marmite drug. Hopefully you’ll get along better with the new drug. Is it Farydak you’ll be trying next?
I’m doing ok at the moment thanks. Got a stinking cold at the moment but otherwise ok. We had four nights in the Lakes last week it wore me out a bit but was great to get away.
Every day is a gift.
Andy
Hi Georgie.
Sorry for the long delay in responding to your post as I’m over 50 I don’t regularly check this part of the forum.
As regards your original post regarding running it is generally advised to avoid high impact sports as myeloma weakens and damages bones. I myself was a runner and was training for the London marathon when my first symptom appeared. Exercise is highly recommended though the lower impact variety is the best.
I haven’t gone down the SCT route though that wasn’t by choice the option never became available to me. SCT is still the “gold standard ” for treatment here in the UK. In the USA it’s being debated whether it is the best way forward but no definitive answer has been achieved and I think SCT is still the most favoured option there too. My personal opinion is a SCT can buy your dad time for more effective drugs to be developed and can give him a long break from taking drugs. Though on a political note with this current government I think in a few years only aspirin will be available via the NHS.
Wishing your dad and all the best in his myeloma journey.
Andy.
Hi Peter.
Glad your medic was on the ball and switched you to Pomalidomide before it was deemed to expensive for us meer mortals that rely on the NHS. I hope 2016 sees you and Pomalidomide building a good relationship.
Every day is a gift.
Andy.
