Hi Jules
All the symptoms you describe ,I have seen with my husband Slim,spent 10 days in ITU plus more in ward!!!so let's hope they can work wonders with your mum,if the can get the infection under control ,your mum could be at you're wedding,it's something for her to fight for.
So keep talking about the wedding to her,give her something to fight for,this will also give your Dad a rest.Eve
Hi Ian
My husband Slim,when first diagnosed had his whole spine effected with Myeloma,plus other parts of his body shoulder blades and skull,it sounds worst than it is,Slim has been on Zometa since March 2011 and it has helped,as for pain,only he can say,I know some times his whole body looks less flexible .
Slim,s had 3 different chemo,s plus SCT,hardly any remission,so different from you,my own personal opinion is Myeloma patients should have a MRI scan,plus full body x rays every year!!!!because the Myeloma evolves,as in Slims case his is only detectable by a BMB,one time he was thought to be in remission after 6 cycles of CDT only to find after BMB it had increased to 80 percent in bones,and he felt so well!!!!
Hope this gives you some help,no Myeloma is the same. Eve
Hi Nicola
Welcome to the site
First thing you should do is ring Ellen,number top of this page she can send you booklets to help you understand Myeloma.:-)
Your Dad seems to be made of tuff stuff,you do not say if he has some one to care for him!! Or how much you will see him,how far is your university ,also were he is being treated,this helps sometimes because,he might find someone on this site who goes the same place.
Your Dad will just want to get on with treatment and think when it's done it will all be over,well it does not work that way,it's often the damage caused by the Myeloma that is the problem.:-S Eve
Hi Scott
If you go into the Mac Milan steroid site it tells you all about the side effects!!!again everyone is different,Slim has lost around 3 stone,steroids never put weight on him,but some people gain weight!!!
Long term effects of steroids can cause extra problems,but I think for some one like you who are on first round chemo,it should not be a problem.
The lesion damage you mention,is small,I know it's frightening when they say lesions on Skull,they are able to see them because its a flat area,Slim has them there as well.
The spine ribs and shoulder blades are different ,MRI for spine and area around,the concern there is compression of the spinal cord,big one.Forgot to say Slim has no compression,the reason he cannot walk very much is complications as other complaints come along,Slim had a blocked artery,which they cleared,but old hip replacement became very painful,so waiting to find out what it is,but like all Myeloma people has good days and bad.
What you describe is normal,,Zometa can give you flu like symptoms again normal,over a period of 2 3/4 years Slim has been on Zormeta it's normally 2 years,different conconsultants have different ideas I do think Slims bones would be a worse state,if he was not on Zometa,you can help yourself with gentle excises ,the fitter you become the more it helps.
You do deteriorate coming off Dex,but as the months go by you will see improvement,all takes time,small steps,you are on this roller coaster for a life time,as an observer ,I think the Chemo reachers a height about the 3 or4 cycle,and then you start to see a slow improvement,little steps. Eve
Hi Tracy
I think you should go back to your very first posting on this site which I replied to!!!,
I do tend to be blunt,just me,it is in no way personal,but the fact is fizzy drinks,in great quantity,processed food,has lots of sugar ans do not get e started on E supplements,what I was stating was a generation gap,for my lack of knowledge a lot of cancers could be caused by junk food,truthfully,I do not know.!!!
I leave the science to the experts,but as a mother myself,I have all ways known how important good food is.i think possible in my day,the temptations for children was not there. Things move on,now they have machines in schools to tempt children to eat ,everyday things that should be eaten in moderation.
I opened a tin of Heinz Tomato soup,for quickness the other day,and found it awfull so sweet,had to go down the sink,looked at the tin and the sugar in it was ridiculous ,if young children today are eating that crap,there taste buds will be so use to sugar,there diet will change there eating habits..
But what would I know,grey haired lady springs to mind.Eve
Hi Scott
Well Slims story is very like Jans except time wise but everyone is individual .
Ask for a copy of your MRI report that will tell you how much damage.
Slim lost 4. 1/2 inches in height,but has now gained an inch.he has been on Ad-cal plus Zometa for over 2 1/2 years,I do not think he will come off either as Slim has only had 6 months remission.
He was told the same as Jan no lifting,finds hard chairs difficult ,he uses a special cushion between his legs,helps bone pain.
Slim still has OxyContin 30m night and day,when he is bad paracetamol with OxyContin ,as it enhances it.He has just started on Tomazipan,only to sleep,but Slim says it does not work hence e mail aw 5am.
All this medication is addictive,and only you can judge your need,I know the damage that Slim has to all his bones,plus I know Slim has a high pain threshold,so in the grand scheme of things,I take the attitude,quality of life is more important,than addiction .
You have to control your own drugs,if you feel you want to cut down do it slowly,go from 30 to25m.excises is very important at this stage little and often,walking,because muscle supports the bones,and large doses of steroids destroy muscle,but fight cancer.Slim is in a wheelchair,but everyday,he walks as far as he can twice a day,plus potters about on sticks,so important to keep as active as you can,. Eve
Hi Dawn
Well I was wondering were you were!!! ,first may I say Dawn,thanks for your reply,
I do not think food nutrition ,is any thing to do with intelligence or lack of money,far from it,it's practicality,growing up with a mum in the kitchen,cooking meals for a family,common sense,but there again,I am just a little grey haired lady.
All this time reading up on food for Cancers,sorry Dawn I have better things to do with my life while Slim is still alive,but I am a great believer in. ". What ever floats your boat. "
As for how long to live,we do not ask because I believe when the time gets nearer,the people dying are often ready,so die peacefully,it's not a big thing to us,but my attitude has all ways been who wants to live until there 80 the person who is 79 !!!!!
So age is not a factor,except for all the things you will miss,for us it's travel and grandchildren.
I sincerely hope you stop reading about living and just get on with the job of living,but as I said what ever floats your boat,I would hate to think,any opinion ,changed a persons life concerning cancer,but that's an individual thought.Eve
Hi Gayle
May I first say how sorry I am that you have also been Diagnosed with GMUS,I know sometimes when I have been watching Slim having all this treatment,my thoughts have been no way!!!,but I am a coward!!! I honestly believe I could not cope with all the treatment,but I suppose,everyone feels like that but when the need must,you want to live.
I am glad I am not the only carer,who feels,that life has been taken away from me!!!,because even if Slim died,I would not get the life back I had,because he would not be there to share it,so we are both in this Myeloma Bubble together The strain of it all has eased,we know there will be no second SCT,or remission,just drugs,Slim had a blocked artery and since then has only been able to walk a very short distance,artery,s ok,we think it might be his hip,but consultant said chemo more important!!,this curtails are everyday living,so it's another blow i am no spring chicken,for pushing a wheelchair,and walking is at snail pace.
I am surprised over the last 2 months how I have adapted to a new regime,
I feel that we are on a downward slope,and once I came to terms with this,I found it easier to accept ,many friends have fallen by the wayside,and I find I am no longer upset about it.Still polite if I see them,but aware they don,t make the contact.usually,it's sorry I have been so busy,will phone sometime!!!!?,,it makes me laugh now.:-) it is surprising how you do adapt.
You sound if you are at the stage were you both do not express your feelings because you are scared of upsetting each other,!! They say you get half the remission time again ,have you asked them are they looking at more than 9 months,Gayle have you and Paul sat down and talked properly about going down this route,we tend to go into these procedures very green,and I do not think the medical profession are as honest as they should be,and because we want that miracle or as Mari says hope,we do not ask questions about failure ,so may be David has something when he talks about quality rather than quantity ,instead of looking for a miracle,enjoy your time now with Paul,I can only tell you I have a better peace within me,and Slim and I have not given up,just adjusted ,specially my life. Love Eve
Sgt Major
The look you gave them should have been enough! You know when people are out of order,just surprised you did not tell them,it's not nice when people basically tell you porkies,would have accepted it more,if they had been honest and admit they forgot about you,but would rectify it as soon as possible!! Some one forgot to make the appointment for radiotherapy,.:-P
Hi Husbandof
Well I agree with Dick about the guilt,but you must remember you are in a grieving process,for the life you had,and at this moment you cannot see any light at the end of the tunnel,grieve has three steps guilt anger and sadness,please do not try to pretend its not happening,because one of the things that can happen,is that you do not talk about it,for fear of upsetting your wife,and there might just come a time,when you cannot talk about it,believe me this can happen.
You are in the early days of Myeloma,so it is hard,it's so easy to exhaust yourself,the practical things can be seen to
1 are you claiming money you are entitled to??,this can help pay for a cleaner or some one to do what ever needs doing
2 has your wife got a blue badge and DLA,a must for hospital parking
3 are you accepting help from people who have offered it ?,makes sense!! You might feel if you can manage,but the more you refuse the less help will be forth coming.
Now husband of,you can moan,shout and vent yourself on here,because we either have done it,or many times felt the same way,just do not get me started on the dreaded DEX,Slim is stubborn but on DEX he was so difficult to live with,I could have strangled him myself,but the DEX,made him think he could do anything,I came home one day and he had moved the wardrobes out about 2feet,emptied a cupboard and put it behind the wardrobes,still trying to work that one out!!!>:-( he would get an idea in his mind wait for me to go out,I never new what I would return too.
Accept your life is different,and you will find it easier to come to terms with,stop looking back,and look for the light at the end of the tunnel.Eve
Hi Everyone
My husband has just had his 7 BMB,mainly for the reason,it's the only way to tell how the Myeloma is going!!!!!
Most of the time he has had a young doctor who has now returned to Malaysia 🙁 she was good, the last time ,Slim said never again,we are waiting to have another BMB,he is refusing to have the same doctor,and wants some relieve,that's says it all,it's not the procedure it's the person who carries out the procedure;-)
Take note I am on Slims case Eve
Hi Tom
You could be right!!! Hope you are,will watch for further details!!!
How are you starting to recover,it just takes time,and I wish you many many years,out of this Myeloma bubble.Eve
Hi Mary
Welcome ,I cannot help you but I know some men who can. Lol
You need young Tom or our Andy,there the ones to give you advice,if they miss your posting let me know and we can contact them .Eve
Hi Tom
Sorry but I think this has been around a few years!!!,this is we're you get the high risk Myelomas around 15 percent,that respond well to treatment,then as soon as it stops,it starts all over again. They have known about these people and there DNA for a long time.
This is why maintenance became an important weapon to buy more time.
We need more trials on the high risk who hardly get any remission,and there Myeloma gets harder to detect,they know what causes it,but in the UK they have to be treated with Chemo that NICE declares for Myeloma,also when patients become Non Secretor they often become uneligibal for trials as there is no way to monitor them!!! In the states people are being treated after DNA has been taken and best treatment agreed.
The new trials will give Dai and Eva a chance if they are eligible .CDP.Eve
Hi Sonya
Sorry about your father in law,if he has been referred to another hospital,may be its something else,even after 1 st treatment they check the bloods for a long time,gradually tapering off to 6 months,so I cannot see it being missed!!!!
Urgent referrals are seen within 10 days,so that might give you some idea how bad it is.
Then they would do test before they make any decisions.
If he responded well to last treatment there is no reason why he should not respond.to next treatment,after first remission it is said you get 1/2 the time again,but even if you get to the stage of no more remission,maintenance. Can extend the time.
They can help the bone damage with an infusion. Of Zometa every month,but I would have thought he would be having that any way over the 2 years!!!
Try not to read to much into his damaged skeleton ,as the pain can be controlled plus bones helped with Zometa,but the Myeloma is a different thing,that has to be controlled by Chemo,and plus Myeloma batters the immune system.
If you go into video on here,you will find lots of doctors nurses and patients explaining about different things concerning Myeloma. Good Luck Eve
