Hi Ian
Swollen ankles,sounds like water retention ,Slims ankles became very swollen on Velcade,had to buy socks with loose fitting at the top.only just managed to fit into his boots,I use to massage his feet and legs which gave him some relieve.
He did not have PN until he finished Velcade,he only has it sometime,s I think it is just a matter of finding out,what is lacking in his body when he has PN,at the moment going through the usual plenty of water,glasses of milk, swelling has gone,but feet tender and always cold. Eve
Hi Teresa
I would say lots of deep breaths are needed,you do not say if you have any support from children or friends,this is a time for some help.even if you can just have a few hours break ,to recharge your batteries.If you just need to chat come on here,someone will all ways reply:-)
Lets hope for some new treatment soon.Love Eve
Hi Dai
I think you have said what a lot of people feel,you see so many people coming on here for advise help or just to explain how they feel,some never to be heard from again,and some just can not cope with the whole process,and as we have both said some who cope for years and then just post. I would not pretend to know why they post and we never hear from them again.May be as Deb says,she has a young family and needs to turn away to cope with her family.
At the moment I have to look to the future,Slim is in a better place than he has been for more than a year,but I do recognise I have only got through this with the help of my cyber friends people that I will never meet.I often think about people who have stopped posting,without giving a reason,I just hope its because they are well.
I am no longer up in the early hours and this was my time for posting,because of this I do miss some posting,when I see a post,that is new I try to reply plus if I think I can help with something I reply,but at the moment,I have few problems,Slim is as well as he can be in the circumstances,and we wait for 23 of April.
Glad to see you are sleeping a bit better,your body will get use to the dose,but its like most things at least your sleeping love Eve
Yes I agree Dai
Slim never had pn when on Chemo ,but he has it now,people have recommended drinking a glass of milk,plus another thing from boots coco ??????,if the gentleman who recommended it is looking in.I would be grateful for the name again.he said it helps him.
Dai I think its because it,s an anti depressant,Slim was of the same thinking a:-S s you,but our lovely GP said she recommends it rather than sleeping tablets,and it did work for a few months,he still takes it,I can only assume that the present treatment or his body has got use to the dose,it does not work so well.he can up the dose but is reluctant to do that.
He would like to cut down on pain relief,but has found it impossible,so he has accepted that he is a legal junkie 😎 it,s a small price to pay when you look at the big picture. Love Eve
ps Thank you for accepting me on face book,and giving me Mins.
Hi Neelie
Well I thought my husband was treated badly by his doctor,but I think your dad,s case beats it.the surgery will now bed over backwards and everything will be by the book from now on,you will have to take my word for that.I was lucky I found a young Canadian gp in the practice that listened to me.She is now are designated doctor,plus I asked my own gp for an explanation,not happy with answers would have just prefered an apology,but I think it made him sit up and think.
Myeloma is only 1% of Cancers and a doctor will be lucky to come across it once in his lifetime roughly 3,000 cases a year in uk,and if you are unlucky you might have a rarer form,which is Kappa light Chain.
Lots and lots of learning for you to do.and more reason why the gp should listen to the patient,.
Your dad is in the best place and you will see an improvement in no time,my advice would be for you to contact Ellen on this site who will send you lots of info and give you good advice.
You are very welcome to rant away,we have all done it,and understand just how angry you are feeling,(it,s the t shirt bit ),so consider this as a fully fledged up member,welcome to are world.Eve
Hi Gill
It does come home to you when you realise children are fighting Cancers as well,My daughter spends an awful lot of time in different hospitals,in and around London,the conditions for care for very sick children needs improving plus it get worst the older you get 14 to 18 year olds are treated on a childrens ward or adult wards. They spend a life time in and out of hospitals in wards some times full of old people,its not good.
The last 7 weeks my daughter and grandchild have spent time in Eveline,Pembury and Maidstone,with her or her husband doing 24 hr care for my Grandson,hospitals should realise that parents are doing there job for them,they often have no help.My daughters just come out of Maidstone,were she was not even offered a cup of tea.so that,s were my money goes but good luck with your fund raising.Love Eve
Hi Susie
Welcome to the site,by the sounds of it,you are going to find more information from here,than your own doctor told you,did you doctor mention the word Myeloma??????
If you went to the hospital,without any knowledge,it must have felt like a boxers punch knock out!!!!!,its a wonder you managed to take any thing in.
Susie there is a future,yes you have Myeloma and at times you are going to feel so low,but as the experts will tell you it is treatable but not curable.
So take things slowly,learn as much as you can,and listen to your body,if your tired rest,its a long journey.Everyone on here is on the same journey even there partners. Eve
Hi Dai
As you can see,its early hours of the morning,enjoying a cuppa and watching a program on the Royal Navy,in ST Lucia,if Slims awake so am I:-P
I do not know if this will be of any help,but Slim takes a mild ant depression Amitriptyline 10 mg,it worked wonders for him for a few months,then he had high dose Cyclophosphamide prep for injections and sleep patten changed again.
Amitrptyline is very mild and we know other people on it,and it seems to work until body gets use to it,but you can up the does.Love Eve
Hi Everyone
Slim had not had a drink for 17 months as it all taste awful and he was a drinking man,tried on a number of occasions but no go.
Then he tried some port with his cheese and biscuits,loved it.Now an occasional white wine,but still does not like his bitter any more or red wine so all the more for me. lol Eve
Thanks Eliza
I have one,but I would like to know how you do the picture bit on here the smiley face was great and now the gadget????Love Eve
Hi Everyone
Nice to see you all in a good spirited mood on this beautiful day 1 st of April,it always gives me the feeling that spring is here although its a bit cold outside.Should be a glorious month for the spring flowers.
Hi Jo nice to hear from you,have you been off on holidays again!! will not be long before Helen,s off to NZ should be saving those shorts ans t shits for NZ.!!if it was just me I would be off like a shot,envy is not a good thing but I feel it,not use to being so confined.
Its so nice to hear Dai and BRidget in such good spirit as you both have had a lot of disappointment lately,this little world of MM becomes the norm.
Let us hope this new spring brings more than the flowers,renewed hope and some new medical breaks.and in the mean time we will support and be there for each other love Eve
Thanks Tom Eliz and Dai
It did take 2 days Tom as the first bloods came in at only 19%,the man next to Slim came in with88%,the first day they got 1.9,so Slim injected him self at 7pm and 7am,that seem to do the trick.4.02 overall .They rang up the same night each time to let us know.which I though was very thoughtful of them.
I have been impressed with both units chemo and Apheresis ,and it does give you a lot of confidence,about the rest of the treatment going well.
Dai you made me laugh,Slim hiccupped his way through treatment if it had been both ends,I would have run for the door. He was feeling pressure at the end desperate to go to the loo,refused to take his laxative the night before,because he hates to be rushed in the morning,and I was trying to get as much fluid down him as possible,tied to a machine for hours is hard going.Eve
Hi David
All good news,must admit was getting a bit worried as you seem to be putting your house in order,I suppose this Myeloma lives with us all the time,and its presents is felt when the time comes to see the consultants.!!!
So what have you planned another cruise,or just a good summer in good old blighty.???
What ever is just enjoy.love Eve
Hi Steph
Welcome as a carer you will have different concerns so i hope this site gives you some in sight,any time your worried or just need a bit of a boost it is worth coming on,so do not be a stranger,this myeloma affects people in different ways this is why they say its such an individual illness.
It is hard at first because you are bombarded with lots of information and it is a big learning curve,we have all been there so try to take it one day at a time,and learn all you can,things will fit in to place in time.
I have seen Andy s post it must be a worrying time for you both,with nothing touching the Myeloma,my husband has problems with some of his readings as they do not show,a true definition of what is going on with the Myeloma,this is why its taken so long to get to the stage of SCT.
So lets hope they get a good chemo combination soon. Eve
Hi Mavis
The things you do,to land your self in hospital,I hope they are waiting on you hand and foot,LOL only joking it,s a scary time for you,but the good news no compression on the spine,that must be a huge relief for you,you are in the best place as the main thing is to get you a good pain relieve,plus get you on your pins.
It amazes me about the bone damage as well,I am surprised that Dai is not on Zometa for his bones,Slim has Zometa and Adcal,because of extensive damage I worry that he will do to much ,so get accused of nagging,plus worry about going out,because he tends to try to do things when I am not there.!!!:-P
Some facts I was told about resuscitation ,is people who survive that and go home, only 13% survive,so I would agree on no resuscitation.But Mavis you are a long long way from that,plus you have your faith,which must be a comfort for you.
I think it is the damage to the bones this Myeloma does that is the problem I often think it is not taken into consideration by blood doctors.Eve
