Hi Everyone
Well home again,this time with different sickness tablets,to take half an hour before potassium,let's hope it works,I am phoning this afternoon to find out what legal potassium is.
Asked the young doctor why the body is not retaining all the potassium,but she does not know.so it's a wait and see game.Eve
Hi Graham
Just to wish you the best for your SCT,as you know some sail through it and some have a few blips,but it's every day stuff to the team,so I hope the weather stays calm for the sailing .
Bit of advice old clothes,own favourite mug,eat as much as you can now,as you will loose weight plus taste buds change on a daily basis,milk became Slims passion,.
Let us know how you get on when you can.Eve
Hi Trish
With Peter having to come off treatment for the hernia,did they not think about extra cycles because just having a hernia operation knocks the body,s immune system!!!
What are his blood readings at the moment,with him having a nasty cold!!!
As Dai said Revilimide usually next,unless he had that first!!! If that makes sense to you..
Hope thing improve soon,but watch out for infection,I found out the other day when nuets are very low,do not give paracetamol ,as it mask infections like Dex,you learn something new every day with this disease . Love Eve
Hi Paul
Well I wish you the best for your donor SCT,I know there are a few on here who,have been lucky enough to have back to back SCT,but do not know if they went on a maintenance regime,there are plenty on the American site Myeloma Beacon.:-) I know Shirley and Jet had a donor one,if you go in to Facebook Myeloma support group.Jet will get your post.,hope this helps.
My main reason for replying is to say good luck and wish you well,and also to boost this up as some post are missed,and I should imagine there are very few of you.Eve
Hi Francis
I do not know anything about smouldering Myeloma as Slim was diagnosed later,but I do know from the last2 1/2 years,that you cannot waste time thinking about it. Mentally you should lock it in a cupboard and just get it out when blood test are due,forget about aches and pains,
My husbands does not show,and the only way to tell is his general condition and BMB,but when he came out of remission,he just new,if we feel very strongly about his condition,we do not just accept someone telling us he is ok,so listen to your body,it knows when something is not right.but we do lock the Myeloma away as we found if you worry about tomorrow,it spoils your enjoyment of today.Eve
Hi Dave
Hospital ones or just ones over the counter???,slim has them as part of his treatment!!!, Eve
Hi Steph
Yes the horrible hiccups sp loud some times people turn round!!! Slim has them,not all the time but when on treatment,as he is now,it's been 5 days since the Dex and he is still hiccuping away!!! I just tell people it's because of the Chemo treatment,if they do not like it,so what!!!!
I think Patients have nough to be going on with without worrying how other people react to a person with hiccups,as for not wanting to see people and talk to people because he is embarrassed:-P tell him not to be!! Or make a joke of it,too much Chemo just taste lie beer!!:-P
I can tell you after 2 1/2 years,it's no different than any other sound,and lets face it,there are lots more things with Myeloma that will worry your Dad anxiety is a big one!!! ,so may be that's what the worry is!!! Eve
David the sgt major.
I am standing to attention,just reading it. Lol,it does show what you can achieve when you make a formal complaint just sad that you have to do it,but well done,I am sure you will be a lot happy seeing one consultant,I know we are,,I feel that even if I do not agree with him,I do feel he listens to our concerns. Eve
Hi Steve
My husband is at KC
I take it your mother has had full body scan plus MRI BMB when diagnosed,full body scan would have shown lesions but shoulder blades are hard to define any new damage as not a flat surface.you do not say how much bone damage there is,but my advice is no massage because if there is damage there it would be so easy to have a break!!!
Myeloma with damaged bones is very painful,and what your mum needs is a slow release based drug over 12 hours,and use the liquid morphine only when needed,normally having Zometa infusion helps the bones,specially as its now 12 months.
The confusion ,could be tablets,or fatigue or pain all three,her pill regime needs correcting,and the truth of it is GP do not see many Myeloma patients,may be once in a life time!!!!!
My husband takes 30 m slow release OxyContin morning and night,any heavy pain he adds paracetamol as it enhances the OxyContin ,and can all so mask infection,so you do have to be careful.high doses of Dex do not help the muscles ,so excises is important.has your mother finished her course of chemo,and did she get any remission!!!!.
I think at the age of 80 plus the Myeloma,taking OxyContin slow release, is nothing!!!! You just need to get the tablets right,also a little excise walking,3lt of liquid a day good food,if mum is having problems with lack of fluid it causes confusion ,.
If you speak to Janny Baxter haematology nurse on Brabourne ward she can answer any of your questions..Eve
Hi Megan
When you give up work,it's not a slower pace of life in fact you often wonder how you have managed to find the time to go to work,sounds silly!!! But any one who has retired will tell you the same,I suppose it's how you think of work. I think some people live to work and others work to live,.
You just put more hours into living,it's just choosing how to live,for me it's simple things having time to smell the bluebells in the spring,right now it's watching all the swallows gathering on the beach getting fat eating insects,ready for the migration,fantastic sight,hundreds of them in mass..Love Eve
Hi Stephen
I am sorry about your Dad,it's a shock when it's so quick,but at least you are there to support your mum,and understand how she feels because of loosing Dawn,the loss is the same no matter what the age.
Try not to bottle your feeling in,grieving is a part of death,no matter how much you you try to hide those feelings they will resurrect ,with some people it takes years to admit to them,there is no shame in feeling Dawn has abandon you,as you say deep down you know it's not true,Dawn would have wanted to grow old with you,and watch her future grandchildren playing,I think it's more the every day things,that have been taken away from you,but you are making progress just by deciding to change your job and the kids can see a difference in you,small steps but in the right direction.it is a process that everyone goes through at there own pace,I can only offer the advice,make you world bigger,when you were in the Myeloma Bubble Dawns and your world became very small ,it's time to expand it will not make you forget Dawn,just help you cope with he future.
I have been looking at different scooters for Slim,so many from a cheap Whisper to an expensive Luggie,keep hoping one will come up local cheap,Slim keeps saying he,s not paying for an expensive one,I can almost hear him saying I might not get any use out of it,but I am more concerned about weight lifting it in my small smart car!!!!,I should just go out and buy one while he is in hospital,that would solve the arguments,he is a stubborn b—-r,but that's most properly keeps him going.
Stay strong Stephen,make your world bigger,even if its taking the kids out for a meal once a week,what ever floats your boat,Dawn would want you to look to the future that she will never have,grand kids weddings parties all the good times.Love Eve
Hi Maureen
Good luck,it's a big thing to step off the round about,change of a whole life style,I never had any regrets,sold my business at 54 and decided to do a lot of travelling to make up for all the things we never did,got to admit it was scary plus getting use to a different life style,but look ing back,it was the best thing we ever did,no regrets:-) if we had waited until Slim was 65 ,he would have been to ill.
Maureen enjoy what ever time is left to you both,live every day to the fullest,and Ian might turn out to be one of the lucky ones and have many many years of remission and good health,lots of people are scared to step into the unknown,if you can do this now it will hold you in good stead for the future on this roller coaster.Love Eve
Hi Stephen
Thank you for your concern,as you know yourself,the practical side you can do,although physically tiring ,the mental and emotional side is very very hard.
I do hope you are picking up the pieces and trying your best for some normality for you and your kids,because that,s what Dawn would want. 🙂 Loosing Dawn,having to be mum and dad,even when the children are grown up,how is the job going less hours and more time to find your own space I hope.?
It,s there presence you miss,Slim was taken into hospital on Friday night and the house felt very quiet ,it came home to me,that this is what it is going to be like,little things hit you ,usually at the wrong time,it only lasted seconds,but it was upsetting. He has now turned the corner,can tell he is feeling much better as he gets very demanding.Did not need an infection when nuets and platelets rock bottom,but he has been responding to Revilimid Kappa Lightchains near normal,have even got use to pushing the wheelchair,my bat wings are turning to muscle ,plus my back does not ache so much,so it's doing me some good,
You look after your self Stephen,and look to the future,you do your best in this Myeloma Bubble,no one can ask more,you have to make your world a bit bigger,I know the theory ,but I also know how hard it is to do,!!!.Love Eve
Hi Ian
Slims been on CDR for all cycles but reduced Dex as he ended up with pneumonia on Thalidomide ,which caused blood clots plus damage to lungs,The Revilimid caused a Artery blockage from thigh to knee ,so I really do watch him carefully,
Look at the trials being offered it is for people who are running out of options,just sorry. Keith who died this year is not around to try them,he fought so hard,but should help Dai. Eve
Hi Ian
There are new trials,if you go into trials on here,it should tell you if any are local to you,if you cannot find them contact Ellen,she should be able to help.
Six weeks for appointment,and asking for MRI for months,not good,do you see a consultant every time or a registra ,what have your bloods been showing plus Kappa Lightchains!!!! Who ever arranged your MRI should have marked it urgent.it takes time for the damage you are describing ,so the Revilimid has not been working for some time,do they give you any results ,for example blood test!!!.
I would be going in with a list of questions to find out why,it has not been picked up earlier, Slim is on Revilimid 4 cycle his best cycle is the last one,but no matter what they think,he will be having a BMB just to make sure it is reducing in the Bone Marrow,we have been here before with Thalidomide ,I take the attitude prove me wrong !!!!,I have learnt from earlier experiences to stand my ground,the only thing I have not got for Slim is a PET scan,but as they say it will not show what is going on in the Bone Marrow!!! Eve
