[andygParticipant]

Hi Vicki.

I really hope things are starting to get better for you. I can’t imagine how hard it’s been for you. My heart breaks a little more every time I read of an online friend passing. I applaud you for your fundraising though my personal thought is maybe you should take a break from the myeloma world and concentrate on a bit of “me” time.

I wish you and yours all the best for 2016 .

Every day is a gift.

Andy xxx

[andygParticipant]

Hiya Dawn.

Great news that your feeling well I would guess that’s a good indication that things are going well. I hope you get a great late Christmas present and go into the New Year and start a long drug free period.

Every day is a gift.

Andy xxx

[andygParticipant]

Hi Helen,

My lungs are now functioning well. When I went for my Previgen? infusion last week and had my obs done my O2 reading was 99% so that’s good. Physically I’m coming along a bit slower though everyone seems surprised by how quickly I’ve progressed. I’m still doing my exercises and a few more as I’m aiming to build up my fitness as much as I can after being told by the top man in ICU that it was my fitness that probably got me through my little trouble.

Christmas shopping has been done online with the help of Amazon, steroids and the odd beer.

My PPs have risen the past few months we’re hoping it’s a blip due to my being ill and all the drugs they pumped into me. Fortunately they dropped a bit at my last reading hopefully that will continue to happen but it does add to the tension somewhat as you will know.

I hope you have a great day at York and have a successful shopping spree. I personally hate shopping in shops I think it’s a big waste of time lol but for some reason Steph doesn’t agree with me.

Every day is a gift.

Love Andy xx

PS. Got it wrong tut it’s Privigen not Previgen. Not a big mistake but it’s my steroid night and I’ve got plenty of time on my hands. It’s hard to keep up with all these drugs I’m on, got a new one today and all I can remember about it’s name at the moment is it starts with a T lol. xx

• This reply was modified 8 years, 10 months ago by  andyg.

[andygParticipant]

Hi Leslie,

Welcome to the forum. Taking each day at a time is definitely the way to go. Live in the present because you can’t change yesterday and worrying about tomorrow spoils today. Saw that quote somewhere and it’s very true.

I was like you at diagnosis at last I knew what was going on. It was a relief to know and devastating at the same time. It took eighteen months from first symptom to diagnosis for me.

The first advice I’d give you is keep well hydrated, two to three litres a day everyday mainly clear liquids. Tea, coffee and juices OK in moderation but are no substitute for water etc. Alcohol is permitted but must be supplemented with more hydrating fluids as alcohol is a diuretic as is tea and coffee to a lesser extent. The reason being is myeloma cells can and do bloke kidneys causing ultimately kidney failure. Some people complain they can’t drink water and find it hard to keep up the intake but it’s VITALY important to keep those kidneys flushed. Dehydration caused by not drinking enough water or drinking too many diuretic drinks thickens the blood and can lead to visit to the renal clinic.

Renal failure is the second most dangerous problem for myeloma patients the most dangerous problem is infections. So the second piece of advice is get a digital thermometer and use it regularly and any time you feel a bit “off”. At my unit I have to ring in if my temperature goes above 37.4 for more than a couple of hours and that usually means I get free bed and meals for a few nights on the NHS whilst I’m on intravenous antibiotics. I know it’s not the same protocol at other hospitals but high temperatures should not be ignored by you or the medics. I myself am just recovering from a close call in ICU with pneumonia and my temperature at admission was 37.8 If in doubt about anything ring your specialist nurse or your day unit/ward for advice. Don’t wait it can be a very delay.

Last little bit of advice – for now – don’t google everything for advice because most is out of date and much is just plain wrong! Stick to MyelomaUK website and the American site Myeloma Beacon I find them very useful sources of info. If you’re on Facebook there is several of us from here on a myeloma group on there and it’s a good place to get an urgent question answered though sometimes the advice can be a little misleading. The Facebook group is called  Uk Myeloma Support Group.

Every day is a gift.

Andy

[andygParticipant]

Hiya.

Six inches is a lot of height to lose. I remember getting my height measured before one of the many scans I’ve had and I was five inches off my pre myeloma height though it was later in the day and I do get shorter as the day goes on.

Has your partners kidneys recovered? I had an ultra sound on my bladder last week and they also did my kidneys whilst they were at it and I didn’t like the way they hovered over one of them longer than the other. Hopefully it won’t be anything.

It’s great that your partner is still in remission and I hope that stays the same for a long time to come. Good luck for Friday.

Every day is a gift.

Andy

[andygParticipant]

Welcome to the forum Ed.

I’ve been a member since I was diagnosed in October 2011 and found the forum very helpful. I learnt a lot from the more experienced myeloma patients and carers and received lots of support.

No two journeys are the same with this bloody awful disease but if you have any questions or advice to give fire away. Even if you just want to moan about the unfairness of it all, shout or scream this is a good place to do it.

I look forward to reading your posts.

Every day is a gift.

Andy

 

[andygParticipant]

Evening/Morning ( it’s 00:40) Richard,

It sounds like you’re doing okay I think small improvements are better than a big changes because rightly or wrongly I think if your condition improves rapidly it could go the other way rapidly too. Working and exercising will do you a world of good. The fitter you are the better you overcome the hurdles the myeloma throw in your way. I was told just before I was shipped out of ICU by the top Doc that the fitness I carried over from my running days help me pull through.

Every day is a gift.

Andy

[andygParticipant]

Hi Helen,

Sounds like you had a great time in Austria and it sounds like my type of place. We missed our Belgium Christmas markets trip this year so that’s three breaks away my pneumonia put paid too!

I try to do my Christmas shopping online with the aid of alcohol I hate shopping. Just got my credit card statement it’s eye watering. I blame the Dex effect. I should stay away from Amazon on Dex days lol.

Hi Peter,

It is quite a few cycles but I’m hoping for lots more. Strange you were given Bendamustine before Pomalidomide or was that before Pomalidomide was available. I was diagnosed October 2011 and have been through most of the regimes when Pomalidomide stops working I’m pretty much at the end of the list. I’ll probably have to go back to some of the older and harsher drugs Bendamustine has been mentioned as has Melphalan.

I hope you get a good response with the Pom Dex regime. It seems to be a marmite type of drug side effects wise hopefully you’ll be okay with it. It’s all about buying time till NICE approve the next wonder drug we’re five or six drugs behind what the USA have available.

Every day is a gift.

Andy xxx

 

 

[andygParticipant]

Hi Scott.

Vision problems are a common side effect of some treatments and Dexamethasone can cause cataracts. Though seeing your not on it may not be myeloma related.

Every day is a gift.

Andy.

[andygParticipant]

Hi Georgie.

Just a little titbit Dex can dehydrate you which will cause headaches. Is your father keeping up his fluid intake.

As to not responding to his first treatment that is not uncommon. Everyone has a different journey with myeloma and reaction to the drugs be it side effects or responding treatment wise can be very different.

I myself went through all the standard treatments with no response. I was then tried on Revilimid and Dexamethasone with little response till they added Cyclophosphamide to the mix which got my PP’s down and kept me stable. So don’t despair at your dads failure at the first treatment the are others for him to try.

Fatigue goes together with myeloma like a horse and carriage does unfortunately.

Good luck with your dads journey  myeloma.

Every day is a gift.

Andy xx

[andygParticipant]

Hi everyone.

It’s another no sleep annoying steriod night! Though it is the start of cycle 25.

Hi Annlynn I’m being treated at Stockton North Tees Hospital as my main hospital I’ve been around various others as treatment has demanded.

Hi Richard how are you getting along. I don’t get on here much and may of missed your posts – sorry.

As to my condition I had a consult with my specialist nurse yesterday and all my bloods are good and my PP’s have come down a little from what was hopefully a blip last month. They had stopped my treatment whilst they were playing around with me in ICU.

Every day is a gift.

Andy xxx

[andygParticipant]

Hi Tina.

Sorry to read that your PP’s are rising. Hopefully this rise will be very slow and that the Revilimid can hopefully beat them back into submission. You won’t have to have full on treatment till the myeloma starts to effect your health. That could be a long way off.

I’m sure your medics will be working on a plan for you.

Good luck I’ll keep my fingers crossed for you.

Every day is a gift.

Andy xxxx

[andygParticipant]

Phew it made it at the tenth time of asking xx

[andygParticipant]

Hi Everyone.

Well it’s Dex insomnia time again. I’m still making steady progress. I still tire easy and my back is reminding me constantly that it’s not happy! The good news is I can make it to the pub for a drink and occasionally for a meal too though a lift in my sister in laws car helps and Steph has to go to the bar for me though I do contribute financially.

It was disappointing that we missed going to Greece in September and I still wasn’t able to travel for our usual October visit to the Lakes. Hopefully we’ll get there next year. I’m jealous of you going to Austria Helen as we were planning on going to Belgium for their Christmas markets at the end of this month. Oh well there’s always next year.

I had Pneumocystis Pneumonia Dusk it’s a fungal infection not commonly found in the lungs of healthy people. It’s especially seen in people with cancer who are undergoing treatment and have a suppressed immune system and it needs to be treated aggressively because it causes hypoxia.

Helen you seem to be having the same problems I had when I was on Rev. my bloods are behaving themselves on Pom. I find it fascinating how we all react differently to the drugs and treatment.

Well it’s time I was some tv on my iPad and hopefully get some sleep later oh the joys of Dex.

Every day is a gift.

Love Andy xx

 

[andygParticipant]

Ha – I knew it a little post complaining would get through. One more try at the long one then it’s tv time. XX

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