[eveParticipant]

Hi David
Hospital 500 yards,you lucky devil,no problems for you.blood test morning,phone you. Up,and pop over for injection .

Slim had 6 cycles which surprised me as,he had just completed 6 cycles of CDT,only to find after BMB the Myeloma had increased in bone. Marrow but was showing on Kapper Light Chains as in remission,that is why BMB for Slim is consided the only true marker,there does not seem to any one else on here who has same problem. It has worked for Slim,the first marker is general health which is good,no coughs or colds,but his bones are not good,uses very strong pain tablets. Looks if bone marrow will be taken every six months,but we do see consultant every 2 months,just in case !!!!!!
He now has a excellent GP so if I am worried and do not want to contact hospital,she has arranged treatment,we do keep antibiotic s at all times.

If Velcade works for you David,you should have no problems,they are having good results from people who have had it as second line treatment,so you will be around to see you lawn flower this spring.
Have you managed to get all your jobs finished in the garden.
Has anyone noticed that Helen is not posting ???? Love Eve

[eveParticipant]

Hi David

Velcade is good although you have to go to hospital a lot more,Slim had less side effects,we did the hospital bit twice in one day two times a week,blood in the morning infusion afternoon,tablets once a month,you look forward to the week you do not take anything.
Lets hope MRI scan is clear,it's the damage it causes,I think is more of a problem,bones never go back to full strength,Slims waiting results of BMB ,they have decided if he is prepared to have one taken six monthly,it is the only way to tell how the myeloma is progressing,last one came up no live myeloma cells in marrow,lovely phrase.
Good luck David.Eve

[eveParticipant]

Hi Sue

I hope you are feeling at peace with yourself and when you go to bed have a good nights sleep,you did your best for Michael,no one can ask more.

My best wishes to you and your girls,I am sure Michael was very proud of you all.Love Eve

[eveParticipant]

Hi Marina

Sorry you are in this situation ,but it will help you with future dealings if you end up in A&E again.

I can tell you during the fourth cycle of CDT my husband was admitted to ITU and was in hospital for 23 days they stopped the chemo ,said that came secondary to Pnuemonia ,all together he was 6weeks no treatment ,then went back on chemo,so try not to worry about treatment.
I would complain about you treatment ,I can assure you,if you ever have the occasion to go in A&E again,they will remember you and you will get better treatment.Eve

[eveParticipant]

Hi Lorry

You do not say how old you are!!!

Slim has a chemo head,it has taken him along time to get back doing crosswords,which he use to be very good at,I did speak to a trial nurse,who said in a polite way he may never get back to the person he was,one year on I would agree.

No one would pick up on it as it is just the odd thing for example driving some were he should know the route,he forgets!!!!
I have got him to accept he forgets many things,so we can talk about it ,although he is 68 I consider it is the toxic chemicals that have caused this,he did have lesions on his skull. The way we try to look at it is that he is alive, we just have to watch out for keys,and check up on things,plus talk about it,otherwise he would get depressed,I try to take a leaf out of Toms book onward and upward.Eve

[eveParticipant]

Hi Keith

Just picked up on your posting,if it is any help I know the can get platelets which are more comparable with you,plus injections that help,but I do no know what they are!!!!

You can always tell when the news is not good the nurses keep looking at there shoes just in case there not shiny enough,and doctors avoid the eye contact,been through it when Slim was in ITU.

One thing about remission every one smiles at you,let's hope those platelets start sprouting wings and start flying.love Eve

[eveParticipant]

Vicky and Colin

This is we're you say to your self yes it was worth it,you just have to wait until his hair comes back curly.Eve

[eveParticipant]

Hi Nicki

So sorry to hear the news,I suppose everyone waits for it all to come back,I have tried to define my f
Feelings from the very start,there is th Myeloma to get it under control,then the feeling of being in a waiting period kicks in,health wise my general health took a battering as Slims got better,we both feel the myeloma will catch up,just hoping not to soon

Nicki Slim had Velcade and had an excellent response with very little side effects,there does seem to be positive results from people having CTD then Velcade so let's hope the same for you. I know it's hard to keep up beat,it's taking valuable time from your life's ,Eve

[eveParticipant]

Hi Jean

All good news,it,s amazing the way time fly,s,will you have far to travel??.
I would take things in as needed if the room is small,found Slim would drink more out of his own mug.

Sorry have not Ben playing scrabble with you,using I pad as computer. Needs new battery,also have a frozen shoulder plus back problems so waiting on MRI scann,as Slim got better I started to get ill,sods law.

Just in case I am not on for awhile good luck,try not to worry,will catch up with scrabble when I get a new battery.
Love Eve

[eveParticipant]

Hi Sue

My heart goes out to you,it must be hard on all the family Michael must be a very strong man,when this is all over you will look back and be glad Michael was at home,it must be the hardest thing you have ever done,try to rest .

I will be thinking about you and hoping,that Michael is at peace and you find your way through this horrible time.Love Eve

[eveParticipant]

Hi Gina

The choice of drugs after relapse can vary on the trials after CTD comes Velcade has your mum had it,you might be able to ask if this is available for your mum,it is having good results,but only seems available on trials.

Melphalan is given to kill the cells,people have it as part of SCT,, Chris are you on any other treatment now?.??

I would advice you to speak to consultant,your mum must be hitting early fifty,s and if she has SC left and is fit enough,why not another SCT,there are a few people on here who have gone down that root. Ev

[eveParticipant]

Hi Vicky and Colin

Slim was randermised for no treatment ,before he was unsure of taking it but we decided t wait and see what the computer came up with,no maintenance came up,ad at first we felt he was missing out,but it has worked out ok,we go every 2 months to see consultant mainly because the Myeoma no longer shows u n bloods or urine so it,s a bit f a bummer not knowing when it is back,at the moment Slim has a BMB every 6 months as this is the only way to find out what is going on in the bones,we are waiting for results right now,but blood and urine still get sent to trials.

Except for aches and pains Slim is healthy,he has a lot of bone damage which will never be the same as before,memory is shot to pieces,he has gone back to never having a cold.he does feel the cold,I keep a general eye on his health as I think this is we're it is likely to show first.

Remember if you go on the trial they will have a true picture ,of how many live longer with maintenance or not,plus the will keep a closer eye on you!!!. Your choice love Eve

[eveParticipant]

Hi Maureen and Ian
The hospital should be taking bloods on a daily bases if there is an infection,they do tend to give more tablets as a precaution,and this can cause Ian to be confused.when you go in check if his general ops are ok plus bloods,if you are not happy ask to see doctor who looks after him on a daily bases as consultants come every few days.keeps them on there toes if the wife wants to know things,

I never left anything unnoticed ,they do not always know best,you have to keep on top of things as nurses are so busy.Eve

[eveParticipant]

Hi Tom;-)

All good news,but I swear you have more vodka than blood in your veins.8-) Slims just had another BMB as only way to tell what is going on,at the stage were you feel it might just give you a tap on the shoulder.

Lovely to hear,you have the all clear ,no wonder you went to Asda to buy more vodka Love Eve

[eveParticipant]

Hi Tina

You are just behind Slim,he was randermised for no treatment ,but we are ok with that,we go to hospital every 2 months ,just to check every thing is ok.

slims just had another BMB as his. Does not show in bloods or urine,so 6 months BMB just to check it,s ok, will have results in March. Eve

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