EveProkop

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Viewing 15 posts - 1,186 through 1,200 (of 1,921 total)
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  • #105524

    eve
    Participant

    Hi Duncan, Yes you are in the right place, if you ring Ellen she will be able to tell you about it plus send you booklets. There are a few people on here with Amyloids so I am sure they will reply when they see your post. I believe there are only about 600 cases a year and Royal Free is the only hospital that seals with it.my

    Husbands friend has this condition and the treatment is the same for Myeloma.

    What I did find interesting is the fact you are a diver,my husband has Myeloma and was also a professional diver at one time,although they say no link.

    Welcome,sorry if there are any mistakes as on I pad in Kings at the moment with hubby,he is having SCT.Eve

    #91786

    eve
    Participant

    Hi All
    They are good profile picture,Think I will have to get my hair done and try it out .LOL Eve

    #85828

    eve
    Participant

    Hi Ali
    Welcome to the site,

    I think we all worry when a new hospital,is on the cards,I know I did,,what you have to remember is they are designated units.All new to us,but something they deal with on a day to day bases.

    It will seem over whelming at first,but treat it all as another learning curve,it will help if family go with your mum as there is so much to take in,if you want to read up on it before,ask Ellen the nurse to send you a booklet,then at least you will have some insight to the procedure.Eve.

    #106401

    eve
    Participant

    Hi Tracey

    I am sitting here this morning,and the sun is coming up I have tears in my eyes,and truthfully I do not know why,I do not know if its because I read your post,and thought,poor girl or if I was just seeing myself a little bit further down the line.So it must be me just being a bit tearful.have to find my little white pills again,they stop the tears.:-D any one on here will tell you,they keep your emotions in check,and you need you to be strong,because he is scared as well.

    I know the higher doses effect the kidneys,but the kidneys can regenerate,I think the biggest danger about SCT is coming out,after feeling better and being confined to a room,the natural thing is freedom,
    My husband goes in on Monday for SCT,and confinement will be his biggest problem as he is very much an out door man.so I think I am going to become the nagging wife again,just to keep him away from illness.

    Your husband is in the right place,to solve his problems,you must be very tired and feel this is all you need after all you have been through,If you have had a few hiccups in the past,you will be just thinking thing are getting as bad as then,I know that,s my fear,one part of me says it cannot get so bad again.Try to look at it,as a small step backward,when he comes out,both of you will be far more aware how things can effect you,so its going to be a month of rest,then small steps,keep people at bay,no matter how good there intentions it will be worth it in the end.

    I will not tell you not to worry,he has a few problems,but nothing the doctor,s have not seen before,so chin up,and be brave.Eve

    #110252

    eve
    Participant

    Hi David
    You know what they say "love is blind" LOL Eve

    #106334

    eve
    Participant

    Hi Teresa

    My thought are with you,do not bother replying individually unless it helps you,we all have some idea what you are going through at this time.

    This is a very sad time for you and your family,enjoy ever day as much as you can,and any time you feel like unburdening yourself,if you do not want to do it through the site,lots of us have an e mail on are profile if this is any help.Love Eve

    #92546

    eve
    Participant

    Hi Jean
    It looks if hubby has a bit of man flue bugs,if you feel worried about them before having a good holiday,for your own peace of mind,go to the doctor,s

    Jean if you have an infection your pp go hay wire,
    I would press for an early scan,I still find it hard to understand why a PET scan in not used in Myeloma,that shows any activity outside the bones,

    Again it seems to be post code lottery.The machines are there,just never been used for Myeloma,what does it take for experts to think out of the box.Eve

    #85813

    eve
    Participant

    Hi Carol
    Were have you been??? not heard from you for awhile .Hope it was sunny were ever you were.8-)

    #99201

    eve
    Participant

    Hi Mari
    Have nothing to add about Velcade.
    Did Steve only get enough stem cells for one chance,from what I can see for allo SCT,you would have to convince them its viable.They like a back to back ,your own sc then a few months later a donor .Eve

    #106332

    eve
    Participant

    Helen
    You just go and have a wonderful time,if you have not seen your sister for a long time you are going to find it very emotional too.Love Eve

    #92479

    eve
    Participant

    Hi Helen
    Looking at Elaine,s reply,I cannot help but think she has it just about right,we would all like to think that people will get a good run of collecting there pension,but it does not work that way.!!
    As for the fact they are more concerned about your blue badge,well every company has to fill there disabled quota,you will then tick one of there boxers.!!!!

    I would think long and hard,about going for an enhanced pension,no matter how much you love your job,it is not the b end of all things,I find it hard to understand,people who cannot make that leap and jump off the round about.There is a big world out there.Love Eve

    #106245

    eve
    Participant

    Hi Michele
    How are things going,did your husband make any decisions concerning whether to go for SCT??
    How are things going in general.Eve

    #85800

    eve
    Participant

    Hi Andy
    I have the same problem,and I am not the patient,cannot blame the Dex:-P
    Wake up, and just cannot get back to sleep,usually play scrabble with my daughter in NZ but she is not always available as its 3pm over there.

    How did the visit to the hospital go,??? Eve

    #92525

    eve
    Participant

    Hi Tom
    Thanks for info,do not have a kindle but do have an i pad ,so will look on there.
    Good to see you are doing well,try not to worry about smm.why worry about it if you cannot do any thing about it,Ask for an I pad for next Christmas they are amazing. Love Eve

    #99174

    eve
    Participant

    Hi Wendy
    I thought the Myeloma X1 trials were world wide with all data being combined and results published world wide,to come up with results that will eventually be accepted as given results of CTD against RCD.May be I am wrong.Eve

Viewing 15 posts - 1,186 through 1,200 (of 1,921 total)