Hi Jean
Sorry I did not send you some best wishers,when hubby started chemo ,I know how much it was getting to you,its strange when the time comes,you just accept this is the way it,s going to be:-P My thoughts have been with you,just not had the time to post much with so much going on in our lives.
Same apply,s for any one else I have missed,how is Bridget????
Love Eve
Hello Tom and Keith
Well he is nearly out.collecting him at 10 pm.Turns out borderline,so pumped with antibiotics lots of fluid,now having bloods and platelets,Appointments have been made for Mondays and Wednesdays for the next 100 days to check bloods.
He must be getting better because he is grumpy left him watching football,
So lets hope I can put some weight on him,before he fades away.
It is amazing how quickly the blood counts can go down.At least he was in a wonderful ward.so that helped me.
Tom one good thing about SCT Slim has not had to shave at all. LOL,I do not think Slim is keen on my sense of humour at the moment.Love Eve
Hi Andy
If it is any help Slim had Velcade, and found it easier than CDT.except more visits to the hospital.Twice a week and twice a day.Bloods then Velcade hrs later.
Velcade is having a remarkable effect on some people.
Good luck Eve
Hi Jen
Sorry you have joined us but you have come to the best place.
First thing tomorrow ring Ellen she will be able to give you a quick run down and send you booklets.
Stop looking for a cause and and start learning as much as you can about the treatment,you are now on a journey and it is a big learning curve.
Myeloma is Staged and there are different types some aggressive some not.
It does depend on how you consultant,how much info you receive,if you do not ask they might not tell you.
You need to know what type of Myeloma he has.
ask about tumour or lesions plus bone damage
spine compression
when you have a full picture you will work out what stage it is
If they tell you they no longer stage Myeloma,then ask why .
you have a right to see all test results ask for them even if you do not understand them,you will soon learn
It does depend on which hospital you go to how the service and care is.Some of the big teaching hospitals and there are dedicated Myeloma specialist .
Your Dad must have been ill before this,what did his doctor do!!!
I know all this seems very frightening but the symptoms concerning the kidneys will soon be controlled you will see a difference over night,it is usually,patients who have kidney problems caused by a build up of calcium in the kidneys causing sickness weight loss, please make a list of questions,ask for a booklet on Myeloma,and last but not least,if you do not ask,they might not tell you.Eve
Hi Alison
I am replying to your post under treatment,it shows in my e mails but not on the board.When I looked into your profile it is not showing a posting,so I have used your last posting to reply.(does that make sense!!!!!)
I think the system is having it,s own blips as 2 of the headings have not been showing on my computer screen. Love Eve.
Hi Eva
How is Sue getting on,although Slim is home we have spent 2 days going back and fourth to are local hospital,Slim has a problem with his platelets on Sunday they were 33 today down to 7,there is fine explanation under the Macmillan Site.Explaining some of the reasons why this does happen .
One explanation is having platelets from another source,some times the body does not accept them,then they have to do a cross match if this carries on.
having low platelets is a very small danger of bleeding,so that is the main worry,it does not effect the neutrophils.
Slims present reading is neut is 1.4 but plat are 7
As Slims body has not shown the classic results in general,I feel its just another thing to take on bored and keep a very careful watch on his condition.
I do not consider the when the harvest was given back to be the cause its just,again the patient react different to different treatments and as Slims has never been plain sailing,its just another learning curve.Eve
Hi Gail
Eve again just realised I am loosing the plot called Howard,Henry,My excuse is i was up with Slim during the night and I have not caught up from all the travelling to the hospital.Sorry Eve
Hi Gail
Sorry to hear henry is having a hard time,may be a little time in a hospice is what he needs.They will be able to get his symptoms under control and help with his anxiety this is what they do and a very fine job.
You said your self Henry,was behaving so out of character,I think we look on hospices as a place to die but they do so much more,it will give you a rest,and help Henry make an informed decision treatment or no treatment.Once his symptoms are under control he might think differently,and choose treatment.
you have also the chance to attend the hospice to learn a lot about there work do take this oppitunity as you will find it will help you.Eve
Hi Terry
I would agree with all your thoughts and what a beautiful picture of Scotland.
You have to keep positive,and enjoy every day.Eve
Hi Chris
A belated welcome to the site,one minute you have everyday living and in the next minute you have joined the club as a carer.
In my mind Myeloma is a dreadful thing,your life does get taken over by it,we do hear of some people who sail through treatment,and go on to live as normal as possible,but we all have the knowledge that one day it will rear it,s ugly head,no cure but there has to be a first.:-)
My husbands dose of Dex was reduced and he was on the Myeloma Trials,so if it becomes to much let them know.After 18 months of different treatment he has just had his SCT,
The whole process is hard work not just for the patient but also the carer,it,s a big learning curve of trial and error.Different treatment for different people,we have all found the drugs effect people in different ways,and food and fluids taste different,so it,s all going to be trial and error,my advice is small amounts of food,try lots of different fluids even things he never liked,my husband developed a very sweet tooth,never touched puddings before:-P
You can get help on the money side,at the moment you might think you do not need it,your food bill will increase,transport,and clothes will all take a hit,you are entitled to help,so my advise is claim it.
I wish you and your husband a good journey,we have been doing it for 18 months,back wards and forward to hospitals,my husband came out of hospital on Friday,had appointment on Sunday,back to hospital tomorrow,plus on Thursday we have a 86 mile trip to Kings in London.
This is were the extra money comes in handy good luck Chris, Eve
Hi Andy
I know how hard it is to remain positive,but it has started to go down,very slowly but it is in the right direction.When Slim was on Velcade it was awful waiting,he had to have 4 cycles before they would take a BMB,as bloods and light chains were considered un reliable as they were not showing a true reading,and on top of that the consultant said it was not worth seeing him until BMB unless some thing was worrying us:-P(we were just scared his bone marrow would go further up from 80%).They see it every day,and forget how it feels to wait and worry that its working,but Hey we got there in the end:-)
You will get there Andy,its been a 18 month haul for us to get were we are now this Myeloma Bubble has taken over both are lives,
You be very careful with your body as you are neutropenic love Eve
Hi Everyone
Well he is home.Frail and bald with a good weight loss.so the time has come to build him up again,other wise buy a new set of cloths:-P
The journey down took 4 hours with a stop on the way,have to go back up on Thursday,and also have to go to Canterbury Hospital on Sunday and Wednesday.
He is busy writing his board out for all the tablets,seems like we have stepped back a year.
he is just so glad to be home Love Eve
Hi Deborah
Welcome to the site,I think Dai has summed Velcade up.
My husband had 6 cycles and found it better than having CTD but he had a few problems with the first line treatment.It does depend on your mothers age how many injection she has in one week,the older patients (80) seem to have one injection.My husband is 67 and he had 2 injections of 2.3 Velcade.It does take your time up as you have to have blood test either the day before or the same day,depends on which hospital and if you are on trials.
So you attend the hospital more,and a close check is kept for side effects.
As Dai said every one reacts different,and there are lots of side effects you can get,so it is wise to tell the nurses everything.Even if its a very small thing.they will look continually for infection of any source.
Hope this is of some help.Eve
Dear Carol
I am so sorry for your loss,you do not mention if you have children,if you have they will give you the strength you need at this time.
I think you have to ask yourself would you wish him back in such pain,do not grieve for him,but grieve for yourself,he is at peace and now you have to find your own peace.You have not had much time to prepare yourself,and talk about yourself,s so this must be hard for you.
I do not think the pain goes away,you just start to remember the happy times,so in time they over take the sad times,take one day at a time,never refuse an invite ,and hang in there until one day you think of him living not how he died.I wish you well on your new journey.Eve
Hi Dai
you can lead a horse to water but you cannot make it drink!!!!you name it I have tried it,he understands how important it is,the least mention of a drink,and I am badgering the kitchen or off to the shop.he said he feels like knocking back a pint,but cannot do it,small cold sips is his limit.
All the thing he is lacking are on drips,plus a driver for pain,as they forgot to give him his tablets once and the result was doctor called,my daughter was there and worked out what was wrong.
The general impression I get is every thing is fine,a little improvement day by day,Slim cannot afford to loose a lot of weight,he was drawn before he went in,i just thought it was the pressure of the last couple of weeks,when they put him on fluids his body took better shape,plumped the flesh up a bit.But he is still refusing a stomach line!!.
I am pinning all my hopes on him improving on Monday,so he will be able to eat.the drugs for sickness never seem to arrive 30 min before food so food goes cold or he eats and is sick.
Any way I am off now to drive to London as SE net work have so many cancelled trains it takes ages,it,s funny all these people who get sick and cannot go to work when it,s sunny. lol Love Eve
