Hi Sallyann
May I ask were is that beautiful island!!!!
Are you in the UK.!!!
I do not understand why you have so little information !!!,you should do some research,as you can have a Plasmactoma,,without being full blown MM..
The consultant should have explained everything to you! So what's going on.Eve
Hi Trish
Well it will be Revilimid ,Nice set certain. Treatments,and the only way round it is trials.the three treatments are thalidomide ,Velcade then Revilimid ,treatment until Pp goes down then maintenance for how long it works,some people have been on it for years!! So it's not all doom and gloom.:-P
It might be worth travelling you can always ask for a second opinion !!! ,remission is usually half of the first time,but it has been known for some people to get more.
We never looked at remission,as we think it came back as soon as treatment was over,so we did not build up any hopes,we accept that it's going to be treatment all the time from now on.
The problem is with Slims body,Myeloma breaks down the immune system,Revliimid has a number of side effect,plus when you have had 3 treatments plus SCT,you are looking at infections,you have not said what he rest of the bloods read.nuets platelets,plus kidney function!! These are important markers.
If the same thing happens again,do not wait for ambulance ,you do have to be assertive,you know your husband best,what are they going to do turn you away!!!:-0
I hope this helps,you can learn a lot about Revilimid on the Myeloma Beacon Forum,because its American,lots of people on Revilimid ,. Hope this helps Love Eve
Hi Trish
Has Peter had Revilimid ,if not that is the next treatment usually ,but if he has had Velade and Revilimid ,there are trials out there, think its muck 5 if still recruiting,I think that's te one to get on,if you can, there is also pomilidomyde with low or high dose Dex trials.
The easiest way to see is go into trials on here they will tell you were plus criteria,they will not take him off Velcade lightly because he will start using his options up has he had a SCT yet!!!!
Velcade can be used again if patient responsed well,but they prefer a year break,plus there is no guarantee that it will work next time,plus if its stopped working now it might have run its course.
Try for a trial,would not worry about government spending a lot of these new drugs are being approved in Europe,I know it's up to Nice plus local NHS,but there are a lot of people fighting Myeloma,s corner,Myeloma UK for one.Love Eve
Hi Trish
When it does happen it is scary,you start looking back and thinking why did you not recognise the symptoms,bit quiet,tired,just not himself,and with him going to bed !!!,you will recognise them next time,I was told you cannot learn it,you just have to recognise it when you see it!!
It's a blip,give him a month and he will gradually recover some strength ,the problem is steroids they mask infection,if Slim is not right,and we are going to bed,I set the alarm!! I know it sounds drastic but infections take hold when the immune system is low. I am surprised you had to wait so long for an ambulance!!!! I would have classed that as being urgent!!!
They might just decide to give him extra cycles with missing 6 weeks,when there is infection in the body the PP go up anyway it's only a guide,they might decide on a BMB so they can tell how the Myeloma is doing in the bone marrow,that will give you a true result..
They do not explain a lot,so it causes more worry,treat it as a blip. Love Eve
Hi Mary
Welcome as you know Chemo causes constipation with some people!!:'-(
The natural way would be prunes high fibre food,if it works great.
The medical way ,I think the best is Movical at least once a day if you can stomach it,it acts on the muscles ,the one thing you cannot afford is to get bunged up,this will make you feel very ill,and put you off eating and drinking,.
So prunes and other fruit fibre,All Bran made into a cake is good!!!,easy to do,All bran soaked over night in milk with fruit,eggs and flour added,cook comes out like a fruit loaf,last for a few days,better than a bowl of Bran any day,you can add honey if you like it sweet., 1 Movical a day uck>:-( .
Banana,s and apricots for potassium ,better than having to take a tablet for low potassium uuck:'-(
Ps All Bran cake freezes as well. Eve
Hi Mary and Charlie
It's now 2 1/2 years since he started trials,M X1 he got randimised for CDT,failed then CDV,that worked had SCT,ramdimised for no maintainance ,but it was back in less than 6 months. Now on CDR 6 cycles then its automatic maintainance with Revilimid ,as there will be no remission:-S
I did read up about it,at the time Europe stopped maintainance : I think you have to ask yourself s ,about the quality of life you want.from reading it does prolong your remission,but people are questioning the quality of the remission!!
This does not apply to Slim,we went straight to France then on a cruise then to NZ ,I could see Slim going down hill,I asked for a BMB,they said it was unusual,but after "you prove me wrong attitude:-P " they agreed,it was back.,so I say this with a lot of kindness,S-D the move,get a firm in who pack and un pack,the house will be there no matter what!!! We're does Charlie want to go!! Book it and go!!!? As soon as you get the all clear.
I remember when Charlie came on here,he could not see a future retirement all the things he wanted to do8-) Well you have been given a second chance,don't waste it. Good luck for the future.Eve and Slim
Hi Mary and Charlie
Good to hear Charlie sailed through it,no side effects,wow.keep it up and may your remission be a long long one,and you can do all those things,you were looking forward to when he retired.
As for maintenance,if you feel in the slightest doubt do not do it,this is one area I think you should brush up on, lots of different opinion about the rev as maintenance,looking back Slim was randomised for no maintainance,I do not think it would have made any difference in his case.Mary I would do my home work,ask people on this site who are on it,either way even if you go on it,and want to come off it you can
There are some interesting article on The Myeloma Beacon on maintenance .Love Eve
Hi Mandy
It makes sense,lenalidomide or Revilimid as some people know it,is derived from thalidomide ,which kills off nerve endings,but I wonder if you had a weakness there to begin with. The reason I am asking is Slim gets cramp in his hands mainly effecting thumb area,and I know he had some nerve damage there years ago!!.
I suppose they do not know the long term effects on some of these new drugs,as how many are around 10-15 years later to compare, I would imagine Myeloma are good guinea pigs,you have cancer! You want to live! And they do not have to pay you any money to test these drugs! Plus if they do not work you will not be around to sue!
That said I am sure you make a lovely cuddly furry specimen 🙂
Bottom Line is devil or deep blue sea.At clinic yesterday,nurse asking general questions,Slim said getting fed up taking so many tablets,her reply was do you want to stop,Slim said What!!,she said you can stop if you want,He said I do not have much choice!!!. My thought were you insensitive B—–d
Now that's what you call a rant!!,she did a very good job,of spoiling his day. Eve
Hi Gill
Stephen had every faith in you!!!,Gill in all the years Slim and I have been driving to France 20 odd years,Slim never ler me drive>:-( :-S 😛 , well when he took ill,he could not drive,I had to get into a 8 metre 4 1/2 ton Motorhome and drive home from Mimmerzan on the west coast of France. He did say he thought he was having a heart attack,said I took round abouts to fast.
All this time I was breathing deep breaths and saying to my self come on you can do it:-) after half an hour it was easy peasy,so you can do it,unless you start crying and cannot see the road,
I take a lot of deep breaths,work wonders,you have your lovely dogs for company,once you have done it, it's another thing you have achieved,there are going to be lots of first Gill but if anyone can do it you can. Love Eve
Hi Tina
Thank you for replying
I had joined the site the year Patrick died,,and at that time there seemed to be a lot of carers on the forum all going through the same things,Min,Gill And I think Sarah or Zara,so there was a lot of banter and exchanging of ideas when there men folk were playing up!!, As we all know its not plain sailing,I remember Min shopped Stephen to the hospital,because he was ill and would not admit it!!:-S
I suppose this was the support I was looking for:-| I know every one has to do it there own way,and accept they are on a down ward track in there own time,I suppose we have been forced into accepting because Slim did not get 6 months remission,he is on Revilimid and if this works he will remain on it until it stops working,so we know there will be no remission,and that's what people strive for. I know there is Dai and Andy,but there not carers,and that's what I was looking for.
We worked it out,the most time we have had away from hospital is 6 weeks,I have watched nurses,being pregnant,having babies and returning to work!! Seems no let up.
I remember you saying about switching on the answering machine just so you could hear Patricks voice,and I have not got Slims voice on tape,so that is one thing I will do,it must make you smile.i have been hoping for a few days when he was well enough to have a break,like this week of no treatment,but his nuetraphils are 0.3 and so fatigued.
Since he has had a clot removed from his artery,he cannot walk very far,beginning to accept a disabled scooter is a good idea,,sorry Tina rambling a bit,looked to see if I could reply private,so it has to be on here.
Anyway thanks again for your post,I know you do not post much now,but when you do,you sound if you are coping well,and learning to enjoy life again,but in a different way. Love Eve
Hi Sallyann
Well I would have to get the computer out for that one.
Plasmacytoma well we all know that's a tumour
Multi centric castle mans disease,new one on me
Absent inferior vena cava vein,new one on me
I cannot help ,but I know a person who can!!! Have you rang Ellen or Maggie from this site!!! Free number top of page,Ellen is lovely,stop frightening yourself on the Internet ,when you start looking at some of those prognoses ,you will think its all over:-P
Please ring Ellen,and welcome to this site,at times I could not have done without it,and the people on it,Eve
Hi Lolly
Well the first thing you can see,is everyone is different,the drugs effect people in different ways,so you cannot comper people.
These are some of the things no one told us.,what type of myeloma my husband had : IgG knapper light chain
Staging : some say no staging others say yes we stage it
My advice is if you do not have a booklet on Myeloma down load one from here or better still contact Ellen or Maggie on free number,they can help you,learn all you can,takes time getting use to medical jargon,we have all been there ,it will help you both on your journey.
I took my husband for blood early today 2 hr befor appointment because his nuetraphils were only 0.3 so it's important I keep him away from sick people(. Makes you laugh sick people go to hospital ) sorry I have a black sense of humour,.anyway got them done,then home. Learn how to read blood results,ask questions,you are the carer.it will help you on this roller coaster ride,welcome to the site.Eve
Hi Karen
Just popping in to say good luck for today's clinic,I know you were worried about the BMB results,I take it you will get them today,but I am sure if it was any thing major,consultant would have seen you earlier.
You had better open the cupboard door brush the Myeloma off,take it to clinic ,then come home ,lock it back in the cupboard,to get dusty again. love Eve
Hi Anthony
The third cycle is when CDT hits home,with any side effects,this does get better before the 6 cycle.
If you are not on trials or not offered any maintenance. Trials,then that is the end of the treatment,but they will keep looking at your bloods,depends on the consultant how often,it will eventually pan out to every 3 months .
You do not say if you are on a bone strengthen drug EG. Zometa,which is a monthly infusion!!!!,this would be the normal way of keeping a general eye on you,in clinic any small problems,picked up by nurse,if necessary see a doctor,then every 3 months see a consultant.
At home you still have to be sensible ,watch out for infections and keep away from people with germs,your immune system takes a long time to build up,and being that little bit older will be a bit slower,this is we're listening to your body comes into play,having a high temp still apply,s.ring unit.
You might think,what next!!! But make the most of not going to hospital,Slim and I sat down and worked out that in 2 1/2 years,the biggest break from not attending the hospital was 6 weeks,and that was only because we went to NZ when he had his short remission. Eve
Hi Andy
Good luck with the back op,:-)
I am sure your local pub will keep the beer cold for your return!!!:-P
Take it easy,love Eve
