I Cant take credit for my thughts Dai, I read it and watched a video from usa that Jet suggested there had to be more consideration for the quality of life whilst treating MM and it also said the results on lower doses of drugs where just as if not more effective than hard heavy doses.
In any event, I am pleased your feeling much more chipper and once you get some answers to the leg pain I am sure you will be even more chipper .
Peters experience of Velcade was good and he went to work daily while on it even though he had DVTs such a shame it stopped working as it showed such promise initialy for him. It didnt stop him getting on with his life apart from tiredness.
Which I have now so must go sleep. While he is wide awake for a change engrossed in CSI. I cant bare it I worked in a CSI office for 14 years and find fault with everything they do. I am sure Sarah feels the same when she watches Holby City my favourate.
Goodnight
Min
Brilliant Sharon,
Pleased to hear you now have a plan. Do you have help with your children ? I hope your not struggling on your own.
little ones are so exhausting and cant understand why mum is not well.
I can tell you that when my husband was 1st on Thalidomide he too was having a bad time but he started it in August and had a drug holiday in December and January had his harvest in February while he had balloon kyphoplasty on his spine. He went back on it in end of February (last year) and had his stem cell transplant in the May.
The break from the drugs was all he needed to get back to being himself sort of but it gave him the time to regroup and get himself together for the next round.
He went back on it for a few months before his transplant which he coped with really really well.
He is now on it again while waiting for his 2nd transplant. It is a good medication. But it is also very toxic at the outset and it takes a while for your body to get used to it. This time he does not take Dex and he is tolerating it really well.
Good luck with the appointment and imagine your telling the children off for being naughty when you speak to the Dr. It will stop you feeling weak willed, and prevent your giving in, Can you take someone with you when you go to see the Dr, it helps if someone can re-iterate to them how you feel.
Peters Dr always looks to me when he is seeking a response from Peter as he Peter never used to tell the Dr how it is. He like you feels weak as water but goes in there and says 'IM FINE'
I could kick him.
The Dr cannot read your mind so be honest an Good Luck. Keep your chin up we are rooting for You.
Love
Min
Hi Joe,
My description of Peter when people ask is he's 'coming on' meaning he is definatly not as bad as he was, he is not at his best by any means but he is somewhere in the middle.
He is gaining weight, gaining strength, and gaining an appetite too. We are back at clininc next Tuesday when he will be told the day for his 2nd transplant.
My kitchen has me occupied, terrified(in case the man I chose to do it makes a mess of it) but excited like I havent been in a long time. It takes my mind of the worry of what happens next! knowing exactly what is going to happen but not looking forward to it. The kitchen will be done I hope when Peter is in Hospital so no germs for him from fitters or otherwise.
Last one we had Peter fitted as he is or was so handy with stuff like that.
The reality of today is he simply does not have the strength or back to do anything strenuous. So its a pain having to find someone who will do exactly what I want. Cant nag the fitter ! or can I ?
Love MIn
Hello Eve
I dont think the apprehension ever goes. I alway keep everything crossed when we go to clinics but my method is expect the worst and if its better its a bonus if its as I expect its not such a sad great shock.
Fail to prepare …. prepare to fail… Ever the pessimist never the optimist .
Good news is always welcome of course but in our case it has been in short supply of late.
I love to hear good news stories just hope one day we will be one of them.
How do I cope, I try to do anything that will take my mind off it. Because I know I will obsess about it if I dont.
Kitchen sorted know what I am getting and where I am getting it. followed your advise and buying all my appliances myself as well as wooden worktops. My hearts desire ! Thank god I have the time to do the research now.
Where did I find the time to go to work. More importantly how on earth did I manage to get up at 6-30am when I cant get out of bed before 9am!!!
love
MIn
Hee hee I got Peter the cinema thing with his DLA last week and its brill… Means I can buy extra popcorn as I havent paid to get in … BONUS but had to watch Harry Potter … not my cup of tea. But cant complain wanted to get him out to the blu** house as I was going up the wall. Oh forgot to say Bridget we used to put some books on the legs at the bottom of the bed to raise it made the water in his legs flow the other way … But had to use a V pillow to prevent it getting on his chest… Dont want to go there anymore. Lots of cream to stop the tight skin from going like thin tissue paper. I remember it well and he was so upset as he could not get his recliner to go down and often was trapped in the recliner when he needed the loo as he didnt have the strength in his legs to kick it down. Poor lamb. It was awful watching the frustration in his face when I had to help him. Male Pride took a big fall in those dark days. 2 years ago next month.
Its difficult to remember life before MM.
Love MIn
Dai
OMG Peter had dreaful DVT in both legs with velcade which turned into many clots in his lungs. Too many for them to count. Pulmanary embolisms.
There is a simple blood test called a D Dimer or D diamond test which takes no time at all for the results. Following which a scan ( type pregnant women get) for the clots.
In his case he had big hard lumps behind his knees and they were hot to touch too.
He was complaining of being breathless for weeks before they sent him for the d diamer test The breathlessness was caused by the clots on his lungs. The Doctors poo poohed his complaints about being breathless for two weeks or more before he saw his consultant and told him.
Like you he had been on warfarin too at the outset of diagnosis. He went onto daily heparin injections for 6 months as a result of Velcade
Bottom line Dai is you know your body and you cannot wait around with DVTs or we wont get to read that book you have nearly finished !!!! (wishfull thinking )
Min
Hello Eve
Well I took your advise and got the appiances myself and wooden worktops too, just getting the units and fitting from an expert…. I am almost an expert myself (not at fitting but know all I can know having spent far too many hours into the wee small hours doing research)
Thanks for the advise and hope Slim is doing well. You will be celebrating a wedding anniverary before you know it!
love
Min
Hi Sharon
Hang on in there, first things first, Im sorry your having such a dreadful experience on Thalidomide. It is not a pleasant drug for anyone, and the knowledge that it is being used to fight cancer is mindblowing.
Sharon I do think you need some help from someone who can talk you through this and suggest tommorow you ring the freephone helpline on here and speak to Ellen.
She is a lovely lady who will point you in the right direction for the help you need. Your nurse specialist can also put you in touch with a Macmillan nurse, who can help you deal with the 'dark' feelings your experiencing.
Perfectly understandable feelings but you cannot deal with them on your own, Macmillan nurses are trained to help all concerned to live with this diagnosis and the side effects of the treatment, perhaps she can tell you how to approach your consultant to get a drug holiday for a while. Lots of people find the regime too punishing while dealing with the symptoms of MM too.
I personally think the dugs for the bone damage may be responsible for some of your problems. My husband used to see and talk to dead people when he was put on them.
There are other options for you, but velcade for instance means twice weekly visits to a day ward and wainting around for 'an age' to be given the jab. For some people it is more intolerable than thalidomide.
As you are on a 'trial' I would have thought the 'trail' staff should me monitoring you more frequently and as you are on a trial I believe the option is there to end the trial at any time..
I really dont know the answer but I do know Ellen… on the helpline . I have spoken to her several times when I have been in despair, and met her on an info day and I just know she will do everything she can to help you.
Please give her a call.
I hope very much she can help you out of the dark hole this darned awful disease sends all its sufferers. dont imagine you are alone as there are many people feeling or have felt, just as you do. Help is our there but you have to ask for it. dont be afraid to ask. If we can help you we will and someone on here will be able to to tell you how they felt just as you do now.
Wish I could give you a big hug to make it better:-)
Love MIn
I Bridget,
I dont know how I missed this post ( Well I do I have been researching kitchen appiances, benches and workmen etc. So i have been buried in the computer with an occasional visit to outlets etc. I hope by now your legs have got a little better, but if they have not Peters specialist told him he could take up to 200 mg a day NOT ALL AT ONCE and not after noon time or you will be up all night.
The important thing sounds stupid I know but as well as peing for England you have to drink too. Bit of a misnoma but Peter always found that he got dreadful cramps if he just took the tablets and didnt keep drinking.
I hope it gets better soon. When he was at his worste I used to massage his legs too but if he didnt sit with his feet raised it was a waste of time as it all just went back to where it came from .
The local hospice rang today and he is going to start going for back massages for the pain in his back.next week.
Perhaps you have had your clinic appintment by now. How is it going. Are you still on the Revlamid? and dreaded Dex. A friend of mine who's husband was on velcade could not tolerate Dex but is doing really well and you wonder if it is absolutly necessary!
Well the deposit has now been paid on the kitchen and there is no going back so better get the rest ordered
Love Min
Hi Sarah,
I know your feeling very apprehensive at this time, but you know they can do some amazing things in hospital these days.
I am sure they will do what ever is needed to get Gordon back on his tractor. Well maybe get him home first.
I look back a few weeks to when Peter was soooo ill unable to get his breath his heart racing at break neck speed.
I worried firstly if they knew what they were doing and when by the next day he was still very ill I got very very concerned.
But these things take time. Patience is not one of my vertues but I can tell you to be patient and trust that they really do know how to deal with these things.
I am keeping all the things crossed for you I can and hope you can use the Blue badge to bring him home.
Love
Min
Im sorry to hear of Stephens infection. I sincerely hope he gets over it quickly, and is back home with your soon.
How is he otherwise Gill? is he recovering from his SCT? I remember you saying he was finding the 2nd one a struggle.
Peter will be going in soon for his 2nd one and wondered how long it may be. I believe the recovery time the 2nd time is a little longer. HEY HO.
Best wishes to him
Min
Oh Dear Sue,
I think you need to get him to take the Dex first thing in the morning so its worn off by bedtime.
Peter had just one dose of melphalan it was a mega mega dose. If you imagine when you get a dose for a stem cell harvest your given a 15% ratio per square mtr of body mass and he was given 70%. not quite the same quantity as for a stem cell transplant. But he will be having the full dose in a few weeks time but he will get his last lot of stem cells back then too.
Meanwhile all he takes is thalidomide and that makes him sleep like a baby.
I on the the other hand might as well be on dex as I am awake half the night. Ho Hum!
Love Min
Hi looby loo
Your poor Dad, has a lot on his plate and must feel exhausted. The treatment regime on its own along with the disease is very tiring, and coping with your mums condition must be really stressful for him.
Speak to a Macmillan nurse, see if she can get any respite care for your mum at a day care centre to give your dad a break of some kind.
Older people will struggle on thru shear pride and often need a little bit more of a nudge to take help.
I am sure he would love to fall asleep after his treatment if it were possible.
I am no expert but blotches on my husband usually mean he is on or needs blood thinners. But I think you need to speak to his healthcare professional to ensure there is not something more sinister going on.
Its difficult to kow what treatment he is on having a drip at home is not something I am familiar with but I am sure someone on here will be able to know what it is. (Velcade perhaps)
Hope he respounds well to whatever it is, but remember the treatment is often toxic and makes them weary along with the MM. But everyone is different
Regards
Min
Best of luck for Michael, hope it works. don't know about the Dex at lunchtime though, bet he is still awake now with it! Cant beat talking to the TV, doesn't answer back, bit like my dogs!
What else does he take with the Bendamustine? anything we haven't heard of before? Peter is recovering from his mega dose of melphalan and no doubt will just start to feel good when they kick him with it again. LOL
Cant get him out of bed much before lunchtime and and he's back again at 10 so has to pack loads in to his short day, but at least eating really really well.
Best wishes to you both
min
Its all good news Dai, and I can understand your being a little disappointed but…..Everything you read about these drugs are that the smaller the dose the better the result because smaller doses prevents the side effects which make the quality of life worse. The side effect I mean
I think I have read or listened to something on here, about small doses being more effective than heavy doses which wipe out the MM but wipe out your ability to enjoy the CR. (Was it Jets post about a Dr from USA?)
In any event 11 is still good as there is less 'load' for it to work on so look on it as being relative to the amount of remaining MM. The earlier results are always going to be better because the 'stuff' is getting dirty' with a massive amount disease. When there is not much left its just mopping up the remnants!
Thats my womanise logic like eating a bag of pop corn.
When you start on it, theres tons in the bag and you can grab loads in your hand, when you get to the bottom of the bag, you have to use two fingers. Well a finger and thumb actualy! and often you drop most of it down your front.
Have you asked again about getting the velcade intra muscular instead of in a vein to avoid the PN? Someone on here has had it that way. Don't remember who but may help with the PN at this stage.
Min
