Hi all.
Thanks for your good wishes re my back op on Saturday.
I must be getting used to all these hospital visits because the thought of the op is not bothering me. Or is that the Dex effect 😛 I'll find out shortly – my last Dex was today 😉
I'll do my best to keep this post short Vicki everyone must be getting bored with my nightly Dex fuelled rambles lol.
Anyway 🙂 I'm going in to have kyphoplasty done to two of my vertebrae T11 and T12. It's usually done as a day case but due to MM I have to stay in overnight. No beer for me Saturday night :-/ unless Steph can sneak me in a beer or three 😛
Vicki I hope Colin's physio does the trick for him. The thought of exercising my back give me the shivers. Nearly all of my vertebrae are damaged and it does make some noises when I move :-0
Ramble over for the night 😀
Every day is a gift.
To be shared with everyone
Andy xx
Welcome Mary
I'm on tinzaparin injections. Done nearly 700 to date :-S
Every days a gift
And an injection
Andy xx
Hi Venessa,
It's my personal belief that the carers in this horrible journey with MM get the s****y end of the stick.
We MMers know what we are going through we know what we are up against and most of us know that we are on borrowed time. We take the treatment and can feel its side effects. We can feel the physical damage MM has or is doing to us. We also know if we are lucky enough to be in remission it will return at sometime in the future. Hopefully a long time in the future but it will return. We also see how others react to our disease and mostly it is supportive and helpful though some don't know how to handle it and don't know what to say to us so avoid us.
Carers on the other hand have stand on the sidelines and watch their husband, wife, partner or parent, their loved one go through the treatment. They see the good days and the bad days and can only watch fearfully as their loved one battles the MM. They must feel helpless watching. No matter how supportive in the bad times they are MM is always something they have no control over. In the good times I imagine they wonder how long is this going to last. Carers are constantly on the lookout for changes in mood, temperature fearful of every cough and sneeze anything take could indicate a new problem and that is very wearing.
My wife has to do nearly everything around the house and also work full time there is no respite. That is also very wearing.
Carers are very aware that they will lose their loved one and have to cope with looking to a future alone. Carrying on their lives with a massive hole in their life. Wondering how they will cope. It must be in their thoughts 24/7
Carers are not trained for the role it's something they pick up through experience with very little help. There is help out there. My wife went to consuling, hope she doesn't mind me saying that, and it helped put into perspective what she could and couldn't influence on this journey. It helped her see the whole picture and her role in it, but it didn't change the facts.
Carers to me are the real heros or heroines in any MM journey. I personally have nothing but admiration for every last one of them. We MMers may not show it often enough but most of us are aware of what you are going through and it breaks our hearts to see it.
It's not wrong to be optimistic Vanessa and despite the doom and gloom I seem to be writing there are people living a long time with MM and new and better drugs are coming along all the time and hopefully a cure will soon be within reach. Stewart knows this also and I even know it. Talk things over with Stewart discuss his and your hopes and fears regularly. Know how his head is working and tell him how your head is working.
I find talking about it helps me the more I repeat my story to others the more it helps me get things straight in my head.
Be optimistic Vanessa be positive try and forgive Stewarts mood swings. There's nothing wrong with aurguing it can clear the air and it's normal. Try and have fun make memories to hold and cherish. Live everyday, the worry will still be there, but try and get on with living today. Look after yourself and be selfish at times and do what you want to do. Have girly nights out. My wife went away with her friends for a weekend recently life goes on all be it a different one than we had planned. I go out with my friends for a couple of beers when I can – probably more now than I used to!
Sorry I've rambled on again it's the steroids.
Wishing you both the best on your journey hoping it will be a long one.
Every day is a gift.
Received with thanks
Andy xx
Morning Eve.
I didn't start with cyclophosphamide that was added to my regime after a few cycles.
I keep looking at people in scooters and wondering to myself how long I can get by without one. Hopefully I won't ever need one but who knows. I'm in for my back op on Saturday if that goes well it may help with my walking 🙂 I hope they can do something about Slims hip.
Every day is a gift
Time for me to get up and enjoy it
Andy xx
Hi Mal.
The first thing I would do is purchase a digital thermometer and check you temp 2 or 3 times daily. Anything over 37.4 for more than a few hours and you should ring the hospital for advice and anything below 35.8 do the same. I've not had a low temp but have been above 37.4 several times, I think 39.9 was my highest, and this was due to infections and I was admitted to the haematology unit for intravenous antibiotics. It's not something I would try and be manly about and try and fight of yourself – infections are dangerous. As you gain experience you and Karen will learn to recognise the signs of infections. Moodiness, restlessness, shivers, chills and generaly change in personality but the thermometer will tell all. My wife picks these things up and tells me to check my temp even though I feel ok just to make sure and sometimes she has spotted and infection coming on. It's a problem when on steroids because they can mask infections and when taking paracetamol they lower you temp so you have to be aware of those things. Cuts need to be cleaned ASAP you need to be careful what foods you eat salads and fruit need to washed well. I steer clear of buffets and salads in pubs or at parties etc.
The reason for all those precautions is the fact that MM depresses your immune system and so does the chemo therapy drugs. When you have your blood test the one to lookout for is your neutrophils anything below 1.0 and your classed as neutropenic and you need to be exta careful. Mine are very rarely above 1.0 last reading was 0.8
Tell family and friends to keep away if the have sniffs, coughs or are under the weather themselves. Avoid crowds if possible – buses, crowded pubs etc a good excuse to avoid shopping 😉
If you haven't done so already ring this web sites helpline and they'll send you out free of charge booklets which are an excellent guide to the does and don'ts and cover just about everything. There is lots to learn and it can be quite daunting but reading the guides a few times asking questions on here and you will gradually get to grips with it. You will need to modify your life style but over time all the precautions you need to take will become second nature and your family will learn to stay clear when appropriate and your friends will do the same. It does sound like your life gets put on hold, and sometime it does, but being sensible you can still get out and about and enjoy yourself. I'm off to Greece in a few weeks time health permitting and I'll be stuck on a plane for 4 hours with lots of strangers with all sorts of bugs but as long as my consultant give me the all clear I'm off. She gives me some emergency antibiotics and a letter for the local docs in case I get into trouble. It's a risk going but you've got to live.
Another biggy is fluids drink a minimum of 3 litres a day! Mainly water though other drinks count towards the total. Unfortunately alcohol is not recommend towards the count. Tea and coffee does though not to excess.
The guides will give you advice on foods ad drinks.
Oops sorry I'm rambling on I'm on my steroids at the moment and they have that effect on me. As well as keeping me awake at night.
Information is king so read up as much as you can and Karen as well and over time everything will hopefully become second nature.
Don't ever be afraid to ask questions on here no matter how trivial or silly they may seem they could be important. Get Karen to read the site as well and she will get an incite into the MM journey. I think the carers have a harder time of it than the MMers. Maybe Karen could join and post on the site too it could help her with the MM journey.
Right I'm going to stop rambling now and try and get some sleep.
Keep in touch and best of luck with your MM journey.
Every day is a gift
Use it fruitfully
Andy
Hi Vanessa.
As someone with MM I do keep up with all the latest news and development of new novel therapies. They do offer hope for the future but sadly for a lot of us with MM that future is to far away.
Even if and it's a big if these therapies do prove to work getting them from lab to patient takes years. Then there is the problem of the drugs not working for everyone. I for one have not found a drug to date that has put me into remission after nearly two years of trying and I'm running out of drugs to try. I'm currently on Revlimid which is a new drug that is just starting to be widely used and that is only keeping me stable. There's two new drugs waiting Nice approval but that can take up to two years! Hopefully they'll get through a lot quicker but then there's no guarantee they'll work for me.
All this means that my wife and I live for today and have no long term plans – booking holidays two months in advance is done with the rider that its only money we lose if we can't go.
There'll always be new and exciting therapies on the horizon and our goal as MMers is to reach the next development but we also realise that we can't hang our hat on being around when they become available.
I realise this sounds pessimistic but it's a reality we have living with MM every hour of every day for the rest of our lives. We all hope for a cure and all hope to be around when it happens and we hope that that cure will be effective for us but that's only a dream at the moment.
As Eve says enjoy today don't worry about tomorrow you can only live in the present. Worrying about tomorrow spoils today.
I realise its easy to say but it's not easy to not worry about the future.
My view of my life rightly or wrongly is I'm as good as I'm ever going to be now I can't wait till I improve to do thing later.
Sorry if this isn't what you want to hear but these are my personal feelings.
Wishing you and Stewart all the best on your MM journey
Every day is gift
Enjoy it
Andy xx
Hi Eve
I'm on full strength chemo Eve, 500mg cyclophosphamide days 1,8 &15 of cycle, 25mg Revlimid days 1 – 21 of cycle and 40mg of dexamethasone days 1-4 of cycle. I do have to stop the cyclophosphamide if my Neuts go below 0.7 but that's only happened a couple of times and I only stop it for I dose.
I'd better keep my quips to myself if your building up your arm muscles :-S as I bruise and bleed easily lol
I hope Slims X-rays come back clear and can get back on his feet soon.
Every days is a gift
Even when it's raining
Andy xx
Hi Dick
Dex is a bit of a nuisance fortunately I only take it for the first 4 days of each cycle. I read too and watch films. Tend to turn over and try and sleep just as the wife is due to get up for work :-S
Hmmm time for todays Dex.
Every day is a gift
Enjoy
Andy
Errr hi again my initial post didn't upload properly so I've tried agai!
Hi everyone
Just a quick update. I've started cycle 19 – guess you hadn't noticed that
Every days a gift.
Unwrap it gratefully
Andy xx
Ps. Oh you want a little bit more detail? Ok – Had my usual blood tests Friday and picked up my carrier bag full of drugs my nurse forgot to write my blood results in my chemo book the only result I know is my Neuts are 0.8 not low enough to warrant adjustment of my regime.
I've been feeling ok this week so I have been making the most of it the past few days. So Friday I went out and had a few beers Saturday night we went out for a few drinks and today oops yesterday Sunday we enjoyed ourselves so much we went out twice. I know the next few days I'll be feeling nauseas, because of the chemo Eve! not the beer, so as they say we were making hay whilst the sun shone – though it was cloudy here lol.
Anyway I'll post my blood results when I ring in and get the next week. Now I'm going to try and get some sleep Dex permitting.
All the best to everyone
Andy xx
Pps. I had to post this twice as it didn't upload properly the first time so it's taken a long time. I didn't know iPads fly so well lol
Andy.
Hi Mal
First of all welcome to the club. None of us want to be here but unfortunately here we are. You'll find the members on here friendly,helpful and very supportive. You can come here to rant, moan and scream if it helps and you alway get a helpful reply. Sometimes we even get to laugh.
My journey with MM hasn't been a very successful one. I was diagnosed Oct 2011aged 53 and put on CDT with a para protein reading of 49. Unfortunately after 5 cycles I didn't or rather my PPs didn't respond to the treatment! I was then tried with PAD, a Velcade combination that too never had any major impact. Next they tried DTPACE which again didn't have any major impact to my PPs levels and I was classed as refractory and told Auto (self) SCT (bmt) was out the question now 🙁
I was then put on Revlimid and Dex and sent to Newcastle Freemans to see Prof. Jackson for a second opinion and discuss the possibility of a donor transplant ( Allo SCT ) He suggested adding Cyclophosamide to my treatment.
To cut a long story shortish! Allo SCT was ruled out too and I'm still on RCD. It's been keeping my disease stable and I will stay on it till it progresses. My PPs hover around the 20 mark. As you can see I'm on cycle 19 if I get to cycle 25 then the Revlimid becomes free to the NHS – saving them approx £400 per tablet.
Anyway Mal that's a little of my story – luckily for everyone else I'm a rare case.
What can you expect – for me and most others the first 3 or 4 cycles are the worst. You have to get your head around this horrible disease and your body has to learn to cope with the very harsh chemicals you take. I got plenty of infections in the first few months and felt pretty rough. Hopefully you'll have a smoother journey than I and your PPs or however they measure your MM will fall quickly and you will go forward to SCT not everyone chooses the SCT option. From what I've learned since 2011 on here it's not a pleasant process to go through but some do seem to sail through it with few problems with others having more. For me it sounds like you get the same problems I had when I started my journey. Mouth sores, throat sores,hair loss, eating problems, mad dashes to the toilet, fatigue and feeling very ill to name a few. However nearly everyone to a man or woman says it doable and worth it.
Hopefully after transplant you'll achieve remission and you'll come off the drugs and gradually begin to feel " normal" again. Maybe return to work and continue on with your life though maybe with a different outlook on things. You may be put on a maintenance course of drugs but that'll be up to you and your consultant. Some go along that route some don't as the like being drug free. The length of remission varies from person to person some getting years and continuing to be in remission some getting not so long.
Once relapse occurs the treatment cycle starts again with possibility of another SCT if enough cells were collected first time round.
That's a brief outline from what I've learnt. No two people's journey is the same and treatments do vary accordingly. If you hit a problem contact your specialist nurse or day unit immediately the sooner the better. Ask for advice on here too there'll be some who's been there before with tips and advice but I would emphasis ringing the hospital first especially if you have a high or low temp or are feeling unwell. Don't mess about trying to get an appointment to see your GP. The telephone help line on here is a great help too. You will learn so much over the coming months it can be difficult to take it all in.
Good luck with your journey with MM Mal I hope it's a long and successful one.
Every day is a gift
Enjoy them
Andy
Hi Dai
You do like doing things the hard way. I don't know what pain killers you're using but if your like me you'll be starting off with the easier tolerated ones. I hated been on the strong pain killers when I hurt my back I was spaced out and like a zombie. I weaned myself of them and luckily I've not needed anything stronger than the occasional codeine with the odd slugg of oramorph. Anyway I hope your up to your extraction on Tuesday and your shoulder settles down quickly. It's a bugger trying to lift a beer using your wrong arm.
All the best Dai
Every days a gift
Andy
Hi all
When I was diagnosed and my consultant ran through my likely journey – chemo, remission (got that wrong!),SCT ( got that wrong too!), relapse then return to chemo and start all over again. I was told after all the drugs and options ran out that would be it! I asked the consultant what would get me in the end and she told me it would be most likely an infection that I couldn't fight off. So I've known since diagnosis the danger of infections and do my best avoid people with coughs colds and sneezes and my family and friends know to keep clear if they're ill.
As most of you are aware my neuts are very rarely 1.0 or over so I'm neutrapenic most of the time. Having said that I still go out to pubs/clubs and have holidays. You got to live haven't you 😉
If my temp stays above 37.4 for any length of time I have to ring into the haematology ward directly whatever the time of day. I then either go to the day unit or they arrange for me to be admitted – because infections are dangerous very dangerous it's no time to mess about with GPs.
Latest Neuts 0.8 :-S 4 weeks till Greece 😎
Every days a gift
Make sure you use it
Andy
Hi all
Latest update – went back for another blood test today and everything was ok. No need for a transfusion and my neuts were up a bit. 😀
So now I'm back on my full meds again. Oh the joys of cyclophosphamide can't wait lol.
Now where did I put my anti sickness pills?
Every day is a gift.
And a lovely present it is.
Andy xx
Hi Sue.
Welcome to the forum. Nobody wants to be here but here we are. You'll find lots of info, advice and support here. We're generally a good bunch but we all have our emotions so sometimes we come on here to have a right good old moan.
The first thing I'd advice you to do would be to give the info line a ring and ask for the leaflets they have. They cover everything from first treatments to financial advice. They are easy to read. Don't be afraid to ask ANY questions on here, however trivial you may think it is, someone – well several members will reply and answer or point you in the right direction.
Everyone's journey is different and everyone's response to treatment is different too it's a very individual disease.
Sue pull up a chair get your feet under the table and join in. We laugh, cry, shout and moan together here but most of all we're here for each other.
I hope your rising para proteins don't mean you have to start treatment just yet.
Welcome once again Sue
Every day is a gift.
Unwrap it lovingly.
Andy xx (a nice gentleman???)
Hi Carol
I agree with Tom. 🙂 It's wasted energy looking back saying maybe I should of done this or that or even going along the why me route too. What past can't be changed we've got to deal with what's here in the present and be hopeful for the future. I was offered a trail at the beginning but turned it down because it meant travelling to another hospital future away. Present hospital is only 10 mins away. I've no regrets about that decision because what's done is done and hadn't even thought about till your post mentioned it.
They are talking about switching me to warfarin, more pills to pop, maybe I'm beginning to look like an old dart board lol.
My PPs are checked at the end of every cycle – every 28 days.
Every day is a gift.
Unwrap it gratefully.
Andy xx
