Hi Mary
Not all patients are put on in,personal history or DVT usually starts it.
Clexane is what my husband uses,but he has just been put on to RIVAROXABAN ,does the same job,no checking needed for both treatments,only when you are on warfarin ,it has to be checked.
RIVAROXABAN is a 1 tablet,a day. Eve
Hi Dai
Slim has had a tooth removed on treatment no problems,did him first as he was being sick,only off Clexane for one day,they had to give him a few stitches as well,but no problems after.
Slim is now taking a tablet that does the job of Clexane,so all good in that department it,s called RIVAROXABAN,does not need blood checked,so that's a bonus.
Hope they sought you out soon.
Daft me rang local unit for blood test for Slim and they decided had to have separate appointments,so tomorrow 8.30 glucose ,next day 8.45 for iron in blood,then we have Friday hospital bloods for Zometa,is it me or are they just trying to fill in blank spots in there appointment book???? Eve
Hi Andy
Even though it,s only since he had a clot in the artery moved they do not think its from that,Slim thinks its his hip,he had a. Hip replacement that was never really successful ,they did not cement it ,put up with the pain,but was able to walk.
Consultant doing xRays just in case it's Myeloma,but said if its the hip,he has to learn to live with it,as chemo more important,the good thing that has come out of it,is the stubborn b——-r has decided a scooter is on the cards!!!
I asked about drugs because Slim is on half that quantity,rev 25m every other day 20m Dex same routine cyclo not sure of dose,when I asked about upping them,consultant said the never do that,only allowed to lower them,but I noticed someone on here in rev not working had his cyclo upped,just wanted to know what the standed treatment is..
Thanks for info will find out who makes these decisions on dosage when next at hospital. Love Eve:-0
Hi Andy
I cannot blame the chemo or beer in my case,it's the wine,and do I pay for it the next day.:-(
Slims on week off,hoping his nuets recover in time for bloods on Friday,having another full body ex rays,cannot walk very well,20 mts is the limit and not improving,only since clot removed from artery,vascular surgeon ,does not think it is artery!!!,my bat wings are turning in to muscle pushing the wheelchair,makes you realise how places are so unfriendly to wheelchair uses.
19 cycles are you getting the full combo CDR and what dosage are you on!! Love Eve
Hi Vanessa
You are on a learning curve,being the carer,you are trying to make the future easier,but your husband has to have normality in his life,Slim does not need to explore the future,but he does come out with some great one liners. EG: out of the blue: if I go in hospital,do not let them put DNR on my file.!!!!
Be normal,treat him normal,I would like to talk more with Slim as treatments fail it gets harder,but he does not feel the need,you both have to find your own way,s time goes on you will accept there is not going to be any miracle cures,learn as much as you can,this will help you,but wait until your husband wants to know,believe me he will ask.
For me the worse thing was worrying about upsetting each other,well we are past that hurdle,I have a saying: by worrying about tomorrow you will not enjoy today,write it down,stick it on the fridge,and promise yourself no matter what,you are going to enjoy today.Eve
Hi Jackie
Well did you take any of are advice!!!!
Well we all know Myeloma is a beast,and some how patients and carers,have to function and live with what ever time is left,it may be years or not so long ,but living the best way,and getting all you can out of it is important.
How come it has taken you so long to find this site,?
I hope you will keep on posting,you can get a lot of good information,and give a lot of information and help people going through the same medication as your self,I noticed you have been on Revilimid for a couple of years,that is an achievement in its self,2 SCT that takes some going,do you realise how much you have to offer to people on here??.Eve
Hi Everyone
Danger lurks,wish I new earlier what I know now8-)
Infection and damage by infection has always been the biggest worry!!!
Why are you not told steroids mask infection?
I was told no one can prepare you,for infections plus the damage they can cause!! So wrong,always keep antibiotics in the house,better save than sorry.
Why not give every patient on chemo a prevent does of claxane or now there is a new pill Rivaroxaban instead of injections,cheaper than injections.
Slims nuets are 0.3 platelets 33 it is so important that carers are aware of the bloods,and keep up to date on new treatments,I have asked for something called shots to help Slim with nourishment ,this week I finally received them,dietician said they did not do them,well I have them now,if someone says no ask why!!!!. Be active in treatment,Eve
Hi Carol
Noticed your post on injections!!!
Ask your consultant or doctor to put you on RIVAROXABAN, it's a tablet no blood checks needed,no needles ,does the same job,with less hassle,tried and tested. Eve
Hi Mari and Gill
As you will know by now I have sent E Mails to you both, Marie,my best wishes to you,loosing Stephen so soon,what an anyone say to you!!
Gill,I have watched you progress and my admiration on how well you have coped,as you say I will get through this,I just hope it is a long long way away,it is just the knowledge that Slim is on a down ward slope,what ever holds it at bay,I have found this whole thing a massive learning curve,with a consultant who tells me not to worry:-/
I know Slim is unfortunate ,and consultants learn about patients as the Myeloma progresses,everyone is different,plus post code lottery,what I find so differ cult with information,treatment is decided with patient,it's a load of rubbish,there is no choice.
Thank you both for your posting,I hope you both go on to live your life's to the full,as your husbands would wish. My best wishes to you both. Love Eve
Hi Lynne
Welcome ,the Myeloma trials are the best place to be,although you do not say if you are on CDT or CDR,good to hear you are Coping with little side effects,third cycle tends to hit home,keep watch on temp plus blood pressure ,plus your Dex moments.
Have you got booklets to help you if not ring Ellen or Maggie on free number,they will send you all the info you need ,keep notes on a day to day basis as you will see from it how it effects your moods plus help with the good times,plus bad.,its worth doing as it gives a guide to your general health,
Learn as much as you can,and try to remain positive,make the most of your life now,live every day as Andy says its a gift.Eve
Hi Tom
Vodka again Wendy!!!!! lol Love Eve:-P
Hi Carol
Come on we're is thar Ozzie spirit,dry your eyes and give yourself a kick up the bum:-)
Be thankful they found out it was not working in 9 weeks!!! Try doing 6 months of CDT then a B M B only to find out it no longer shows in bloods and its gone up to 80 percent in the bone marrow!!:-( .
You come out shell shocked,far to numb to cry,but these are the blips,people talk about,everyone would love to sail through treatment,have SCT,and years of remission,but sometimes it does not happen:-S
Think positive,if you are on MX1 trials Velcade is usually next step,easier simple injection,blood test before usually 2 times a week. Slim had less side effects,
Velcade. Is getting good results,I think Debbie Gasgoin,had a similar problem and I think she has been in remission for a few years now,worth going into back post,might make you more positive. Eve
Hi Wendy
Try not to feel down,Velcade is having good results,Slim found it easier than CDT,the only thing he hated was spending so long at the hospital,but things have moved on from then,so a chance to have it sub cut.,as you know it was considered a failed drug for Slim,but I think he has moved to high risk Myeloma,as they work well until he comes off them.
What's on your next wish list???
I read your blogg,and you do amaze me ,your stamener ,good luck for this weekend, Eve
Hi John
Research in to cancer cells and alkaline diets,are well posted on the net,but also not very advisable ,as it not only effects cancer cells,if the solution was diet,Myeloma would not be a killer disease it is.
As for loosing goodness from cooking veg,the answer is yes,if you have a good stomach for juiceing there is a book on green juicing,cannot remember the author ,but again try the net:-)
Blueberries are best juiced,I would advice any one to buy a juicer as a good way to get full goodness from most fruits and veg.
Dawn from previous post I deemed you to be in the high risk myeloma group,as ex refractory ???? And lucky enough to be on medication that's not available to NHP!!! 7 years with Myeloma,and never once been spoken to about you diet.May I suggest a practical guide to living with and after cancer.DIET AND CANCER,from Mac Millan Cancer Support,it gives you everything you should have been doing in the last 7 years,to help your body.Eve
Hi John
You forgot to mention attitude,reading some of your post,attitude or state of mind has got you this far!!
Lets hope you have a long remission,hope you managed to mix the concrete !!! Good Luck Eve
