Hi Linda
If you will not speak to Ellen or Maggi because you are worried about getting upset send an e mail,might take a few days to reply,but they will give you facts.
They monitor what is on here so you might get a reply!!!
I think you should be asking questions,??
There is a daughter on here who,s mother is 86 she has Myeloma plus breast cancer,lives alone and is receiving treatment,to me there is something fundamentally wrong,when they are not even trying to treat your mum. Eve
Hi George
Well the break is very clear,but if you have a look around the fracture plus further down by the elbow you have round cloudy bits,I am surprised the radiographer did not do the whole arm,if you go into video. Plus scanning on here you will see different pictures of lesions,my own husband has them on his skull and shoulder blades,its were cells have gathered before it becomes a tumour,chemo will take care of it.
They will want your arm to be on the way to recovery as chemo will effect your immune system,you cannot afford any infection,
Please ring Ellen or Maggi,I think Elle iis at the Bournemouth. Conference,she is very good at explaining things,which will put your mind at ease..Eve
Hi Carol
Thought it might be better to reply on here rather than George,s post. 🙂
I would like to tell you your body will adjust,but every one is different ,my husband had CTD on the myeloma trials,and although I read as much as I could,we both were beginners ,Dex days had some good and bad points,ate like a horse,but he'll to live with.
I went out one day only to come home to a bed room completely different than when I went out,:-P I can laugh now but at the time,ahhhhh!!!
The third cycle was the worst,but unbeknown to us he had Pneumonia ,so 22 days hospital plus no CDT for another 2 weeks,the symptoms were very much like what we were told to expect,the only thing different was blood pressure,steroids mask infection,so be wary. I know I will never make the same mistake again,big learning curve,plus have become very vocal.
You asked how the gremlins attack the bone!!!!
Some form a tumour
Some break down the bone by clumping together causing lesions,because it is all over the body it could go any were,the whole Skelton is effected sometimes,some people just have one tumour
Some people have no bone damage,this is the problem with a cancer in the blood.
IgA and IgG are the most common ,as for bone damage David had a broken neck ,Ian has compression on spine,it just depends what those gremlins find tastier in different people,as Helen said they went to her leg. Some people it attacks the kidneys ,as the calcium gets into blood then kidneys causing damage,kidneys regenerate,but some people on here are left with little kidney function, this is multiple myeloma.
I know of someone who lived 18 years after being diagnosed,its getting better as more drugs become available,we all look for cause,but as you progress you will learn that no one knows??? There are other people ahead of you on this roller coaster,they can help you,they will listen.
My husband is having a Dex Day today half dose,he,s already bitten my head off twice :-0 .Eve
Hi Carol
Any cancer patient should be referred to a consultant with in 10 days.
As I was saying,when you start chemo your immune. System is low,they will want the break to heal.
They only usually give radiotherapy for pain or if there is a danger that more damage is going to happen for example spinal cord compression.
This is why I told George to go back to his doctor and ask for a referel,as a patient who shows all the signs of M M he should have an appointment within 10 days BMB with in the week.
I was just pointing out that this roller coaster is for life,plus only one blood test showed Myeloma,it could be smouldering Myeloma or a one off plasmatoma or a related disease. They have not diagnosed it and until he has a BMB and they look at the bone marrow ,they do not know!!
My own husband is non – secretor so the only way of monitoring the disease is a BMB every 2 months,plus how he feels,so we know all about anxiety and worry,Yes George needs advice Ellen can give him some peace of Mind,yes he does need to see his own doctor,also his own doctor should have on computer,the consultants verdict,if he is not happy he is the one for an immediate referrel. Eve
Ps just looked at your profile ,so understand we're you are coming from,I am known for being blunt,do not take it to heart,
What regime are you on ,may be we can give you some advice about coping with the drugs and side effects.you sound very Dexitude,my family often wonder if I am on them,because this whole disease after 2 1/2 years non stop leaves you worn out and I am just a carer:-P ,so welcome Carol.Eve
Hi George
Welcome,from being fit,you find yourself wondering how an earth could all this be happening,well it does and its a big big learning curve!!!.
Many people like you show no extra signs of Myeloma,at least they look if they have picked it up early enough,the way they start to diagnose Myeloma is with blood and urine test,there is different types of myeloma but all treated the same. The only way to confirm 100 percent is a BMB. As you are showing no other symptoms,I suppose they do not consider you are urgent, I would go back to your doctor and ask for a referel to a Heamatologist .
My advice is to ring Ellen or Maggi,or if you cannot wait until Monday,go to the section on here,that will tell you all the facts about myeloma !!!
The other thing about your bloods,is there are lots of related diseases ,Amyloids ,walderstomes ,they are looking at your Paraprotein ,Myeloma starts in the bone marrow anything over 10 percent,plus extra damage,Brocken bones,kidney function,will lead to a BMB this is the most important marker to diagnose Myeloma.
My husband was diagnosed with cracked vertebra,s plus osteopenia ,by a radiologist ,he was having othe symptoms feeling sick weakness,over a period of 6 months the doctor took blood test and gave him calcium tablets to take telling him,given time it will heal,after constant visits with no results,and the look from the doctor (stop fussing women), I saw another doctor in the practice,I explained my husbands problem,straight away she said there is a disease were calcium leaves the bones,the proper blood test was done,husband had AKF plus hypercalcma ,dur to calcium 10 day urgent referel . The rest is history.
When anyone is first diagnosed,you just want to get on with treatment,but it does not work that way unless treatment is urgent,the disease would have been there for awhile,so its not urgent.
We call this a roller coaster ride with good reason,and it lasts a life time,so there is no rush to join it.Eve
Hi Sue
So happy for you, soon be every 6 months like Tom,you must be looking at the world differently now,I hope you make lots of plans to do so much with your future ,life is for living,so enjoy,or as Tom wouls say if he wasn,t enjoying the sun in Spain, On ward and Upward. Love Eve
Hi David
All sounds good to me,will not touch your bloods unless they fall below 8,the rest plates and neuts,cannot complain,I question a little dextitude, lol,Slim believes he is reasonable on it too. Pigs might fly.
There again I am just a carer.Love Eve
Hi young Tom
That is what you need honesty ,we know mistakes happen,but often if its explained it is more acceptable,there must be other people in the same boat, (no pain no gain ):-S a little bit of pain never hurt anyone>:-( ra ra ra,sorry do not believe it,get the pain relieve out. ( I am a coward) So I do feel for you.
The rest will be a bit easier after all of this. My best wishers and thoughts are with you.Eve
Hi Karen
We all know Myeloma acts differently with different patients.
I think you doctor is doing all she can at this present time,MRI,plus BMB. The pain could be just the collapse on the vertoblaster,when she is talking about wholes, I can only assume its like lesions where you have a clump of live cells,when treated with radiotherapy. Or chemo because they both do the same thing,it leaves a hole , Slim has them on his skull plus shoulder blades,this weakens the bones if in an awkward place like spine,causing pain. If you look at your results,it will tell you how much the Skelton is effected.
May be you should see about going on Oxycodone slow. Release and topping up with paracetamol ,your pain does not seem to be in control,see your own doctor,my attitude to pain is no one should suffer heavy pain,and at this stage of the game when bones are effected,its a none starter,take what ever relieves the pain. Plus the fact some people have a high pain threshold than others,Slim can take a lot of pain,he now has BMB every 2 months.
It's just awaiting game Karen,its an awful position to be in,because you build your self up for remission,it hits home hard,so try to be objective about it,a BMB will be a true reading of your condition,if it shows Myeloma cells they have caught it early.,might not treat it until other symptoms appea ,if its clear you know your blood results are a true reading.
It's a hell of a roller coaster isn't, it.:-P Love Eve
Hi Linda
I have sent you a personal reply,if you look at your profile by clicking on the blank space werea picture should be,it brings up your details and you can send a e mail on there.
Please get in touch with Ellen or Maggi,free number talk explain any results you have,to me it just seems they are writing your mother off,I think the eldest person we know about on here is 80 something,
Confusion is caused by calcium in the kidneys,it is one of the first signs,my own husband after months and months of going to doctors,was taken in on his first consultation with AKF plus hypercalcma ,went in,in a wheelchair,walked out 48 hrs later.
Eve
Hi Karen
You must be totally confused by the e mail the consultant sent you!!!
I do not want to worry you,so take it in stages,radiotherapy. For the pain only!!
MRI shows some still active disease,it could be a small clump of cells,were you are getting the pain and radiotherapy will do its job.
Here is we're the worry comes in,Myeloma can become non secretor ,meaning it no longer shows in blood!!!that is why the only way to truly tell you are in remission is a BMB,even then it always has to be taken from the same area ,try to look at this another way,if the Myeloma is back,its good they found it early,if its not,you know that you have no Myeloma cells at that present time!!! Sounds contradictory ,but it helps to think that way,rather than bury your head in the sand.
My husband has had this problem from the first treatment,bloods good,feelings good,then the dreaded BMB only to find after 6 cycles of CDT it had gone up to 80 percent,we went in thinking good news,only to be told it,s most unusual,so we now look at things differently,
You have to listen to your body,after Slim had CDt then CDV then SCT after 100 days we were told he had full remission!!!!!after 6 months I ask for BMB,and originally told we do not monitor it that way, I persisted because I am a pest,he got the BMB only to find it was 10 percent in bones,now its 30 percent,but his bloods are showing none of this until it started in his kidneys,now on CDR,so you must listen to your body.
This disease reacts different in every one,and its a waiting game waiting for results,think how you feel in yourself,pain tiredness not improving,.you will not need results,you will know in yourself,if its back.
I will be keeping my fingers crossed for you Karen. Love Eve
Hi David
As soon as I read the word prunes this vision of prunes and thin custard from school days came in to my head>:-(
But you are right they work wonders,at the moment Slims taste is little and often, eg smoked salmon and scrabbled egg for breakfast,the dog Is quite partial to it as well,;-) so nothing is thrown away…
I think eight prunes would be 3 meals for Slim,have to start looking up some ways of serving them.Love Eve
Hi Helen and David
May I butt in here,as every one knows bowel movements are very important to how you feel on a day to day bases,I can think of nothing worse than Senna unless you are really bunged up, Movicol is a must at first you might have to take it a couple of times a day,but it does make the gut move more naturally .then you can reduce it to one a day.
Bowel movements are so important,just to stop feeling lethargic .Eve
May I first reply to BAbs
Hi BBs and a warm welcome,you may not get many replys as you need to start your own little bit, if you go into newcomers,scroll down to bottom and press discussion ,you can start you own thread.
Welcome any way,so glad you are finding this site useful,there is another couple who live in the Isle of Wight ,is this near you.
Hi Posie
I found before MM I was a prolific reader,I cannot settle to do many things,so do wish I had some skill,but temperament at this time has deserted me,Min on here has taken up sewing since her husband died,and she loves it,her designs are lovely.
I moan about. 15 mile drive,and an 86 mile to London ,but you have a lot of open country,were we are bum to bum in traffic.
My thing use to be travelling in are Motorhome,but every thing has had to be scaled down,not many adventures abroad. We cannot complain as we retired early and travelled a lot,just wish we could still do it on the same scale.. Eve
Hi Dai
Small steps and positive movement!! I like that.
Do you remember I had trouble because my doctor diagnosed Slim far to late and I changed to another doctor with in the practice,determend not to leave,so he could watch the result ,of his mistake!! I can except mistakes but not the dismissal of it!!!
My new doctor left the practice,so we decided to go to her new surgery,what a blessing that was.We now have two very careing doctors,were nothing is to much trouble,plus one doctor,s father died of Myeloma ,so she can see it from the carers perspective.
I found out over 400patients left,!!! Now that's what I call patient power.
As for litigation it is soul destroying,you may ask why I have no faith in SEKent NHS,it takes many many years,people blatantly lie to save there jobs,no one at the end of the day says sorry!!!!!it took a high court judge,to ask a barrister,: Have you anything else to say to this family : he apologised on behalf of the SEKent NHS..
A Midwife retired on a full pension for her blatant lies.
That's why I am so against this system in this country!!! Only when doctors can stand up and admit to making mistakes and learning from them,can we move forward,the patient can be compensated ,the doctor can make sure no mistake will happen again,and if you have a doctor ,who does not make the grade,they can be dealt with,how does some one live with themselves knowing they have done so much damage ,instead we make solicitors and barristers very rich.
No amount of money is going to give you back your health!! A little amount of money would make your life comfortable,in NZ they have a system, that when a mistake is made and proven,then you can apply for help within the system far better.
There!!! That's my rant for today,litigation ,s door opens but it's like opening a nasty box of tricks,not nice at all,.Eve
