Hi Jean
Good to know Frank got home,it does take a lot out of them Jean,when Slim came out the idea of going home gave him energy,I wanted him to have a wheel chair to the car,he refused,we made it from Kings in London to Kemsing Sevenoaks,had to stop as he could not go on,had a rest,then rushed like mad to get him down to Deal took 3 hours and it just about finished him off.So make sure Frank takes it easy.if he is still in hospital this week,get a porters chair and push him round hospital,most hospitals have a gym ,wheel him down,they have foot peddle bikes,good for leg muscles .
Jean you are sounding emotionally drained and the hard work for you has not started,keeping things clean,cooking food that will not be eaten,and being at Franks side to help wash and get things is hard work,try to rest,cat nap,get snack type food in,believe me anything you can do to make life easier for yourself is worth it.
There is light at the end of the tunnel ,it's just slow getting there.
slim was unlucky SCT did not work for him,he has started the roller coaster journey again,but we managed a few holidays between ,so that was a plus.at the moment we are coming to terms with the future,we will know more on the 12 April. When we see consultant. Wishing both of you a long time free of Myeloma .Love Eve
Hi Maureen
I never realised you had difficulty getting diagnosed,what did you doctor say about it???
How are things going,are you managing to get any rest.Love Eve
Hi Baba
Well 1year on,and lots of years in front of you,congratulations .
I know you go to Canterbury ,so is it just Zometa now and a visit to see consultant every 3 months??
Let me know your next appointment,it may just fit in with one of Slims,I think we will be on the old route again.
Have a nice Easter.Eve
Hi Jean
Sorry to hear Frank,s still in hospital,did not realise as I do not look in on here a lot at the moment, I thought Frank would have been out by now,kidney,s leaking,that's a new one on me,is he in any pain!!! I use to shower Slim when he was all hooked up,some times I ended up wetter than him,he had a shower but a wet room would have been easier.
How are you managing Jean it gets very tiring going to and fro !!!
Try not to worry about eating it does take some time to come back,but they do like to know he is eating and drinking alright ,you know yourself Jean,the hospital throws you out as soon as possible,specialy around holidays,so there has to be a good reason for keeping him in.
I think when any one first comes out after SCT,you are a little worried,you leave and all this support is gone,it is a very strange feeling,both Slim and I felt we were left in limbo hospital 85 miles and if needing any treatment except for bloods and platelets it was A&E . Your hospital is much nearer,so at least Frank will not have far to go.
When he gets home for the afternoon,he will not want to go back
Try to get some rest Jean because it gets harder for you when he gets home. Love Eve
Hi Dai
You have just reminded me were I was 2 years ago at Easter and it was not avery good time with Slim.
I think you are asking are you being a little bit neurotic,well the answer is NO,any one who understands your position knows all the possibilities ,and the thought of going to any hospital during a holiday period, is worrying. Yes keep watch on you temperature ,and you know fluids are so important,but ask Janet to keep an eye on your blood pressure plus make sure you are not becoming a bit confused.These were the only signs when Slim was so ill.
Thank you for your concerns with Slim,I must admit it did hit hard more so than when CDT Failed and we were not expecting that either because he had improved so much and results were good,so BMB was a shock then,but more so this time,I asked for it for peace of mind, ( that's a laugher,who can live with this illness and not worry) .
Dai you could all ways get some mask!!,! They only offer 15 minutes protection,but at least it will give you a tiny bit of normality ,and be able to hug the grand kids plus Janet..I would be tempered to we're one at the hospital,as that is we're you will pick up anything.
Happy Easter Dai and Janet,love Eve and Slim
Hi Dai
Slim has already had Velcade ,!!! I was hoping the doctors ,might consider a form f maintenance ,as BMB are the only way to tell Slim has Myeloma,you would not believe how good his bloods are !!, most properly healthy than mine.
We should. Have the answer once we have results of MRI and body scan,by the time we see consultant it will be over2 months since BMB and another BMB ordered for May.
When it comes to later stages and treatments,there seems to bea queue.time becomes a very valuable .
I think they are finding Velcade is excellent while you are on it,but the Myeloma just comes back,they need trials as a maintainance drug. You are right in saying,that once you are further down the line,it's how long!!!but you have to measure quality,against drug treatment,I would agree you are more likely to pick up an infection at hospital ,I know when Slim got Pnuemonia ,the only place he could have caught it was hospital.
Have you heard from Keith,last time he was in hospital !!! eve
Hi Dai
Sometimes these experts forget what it is like for the person with Myeloma,and we can make up all the excuses for them,we know they have to be practical,but I do think they need to go back to school and take lessons in compassion and politeness .
I would not wish this disease on anyone,but they should show some understanding how we feel,when options and time is not on our side.
You are not asking to jump from one treatment to another treatment,you are asking what the possibility is of getting on this trial if this one fails,you are not asking any thing abnormal .
I have come to the conclusion they do not like patients who ask questions,you are just suppose to sit there and nod your head.and then your 10 minutes is finished.Eve
Hi Jan
Welcome to the site,and I am sorry you are going out of remission.
I might be wrong on this but reading present information. To be eligible forMUK. 5 I think you have had to had Revidimide ,you do not say if you have been on MX1 trials???.
I thought the criteria was you have had to have had Revidimide ,before acceptance on these trials!!!!
I can only say Jan Velcade worked ver well for my husband,CDT had no effect but Velcade worked,he had SCT,,but because it no longer shows in blood or light chains I asked for a BMB because the last one was 6 months previous ,the results show 10percent myeloma cells in bone marrow,the previous BMB it was 0 percent .
I personally would like to see some trials of Velcade as maintenance !!!
Hi Joanna
I am sorry you have had to join us,you are so young with children if you want to join the under 50site you have to apply look on this thread I think Deb,s up,d the post last time.
If you do not mind joining the rest of us,it would help if you went on the Newcomers bit,just introduce yourself and tell people a little about yourself,it all helps you might find some one near you who could be of help.
My name is Eve and I am a carer to my husband Slim,we live in a little place called Deal and he attends Canterbury,he is well ahead of you,on his myeloma path and has had lots of ups and downs,there are plenty. More on this site,so we will help in any way we can.
Good luck on your journey. Love Eve
Hi Alco
You can not base having Myeloma purely on urine,other factors are taken into consideration.it is not worth going into unless you are diagnosed with myeloma,low white blood cells can open up many problems,so do not go scaring yourself thinking you have Myeloma it is uncurable.
Go back to your doctor or speak to a well qualified Myeloma nurse on this forum.she will be able to give you the facts or send you a booklet.Eve
Hi Dai
It is good news,I hope if the medication you are on does not work I hope you get this one 500 people only,as you said it has to show in urine,
I worry that as Slim did not respond to thalidomide how well will he do on Revidimide ,and if the same conditions apply,he will not qualify for the new trials.
Any one heard from Keith????
Love Eve
Hi Dai and Jean
We are suppose to be getting all these new people to tell us about themselves plus post a picture!!!!!
Dai Slim has had CDT plus Velcade next should be Revidimide,!!!!!! We though we might get 2 years !!!,,the only way we new it had returned was I asked for BMB as it does not show in blood or urine!!!!!!!?. We do not know if he will be eligible. For any future trials.plus it has come back so quickly. From being in full remission to 10 percent in bones, is 7 months between BMB,does not bode well. Love Eve
Hi Maureen
Take everything they offer you it will help in the long run,I look back at the first time and thin how an earth did I do it,things also had to be changed at home,a shower instead of a bath,wooden floors in stead of carpet,the list went on and on,and some how I managed it.
This time I will not have all those problems but I am dreading the next round of chemo,all those hospital visits waiting hours in corridor s waiting for drugs makes me very angry .so I am dreading how I will cope.Slims bone marrow has gone up to 10percent,so waiting on test results. We thought we might get 2years free of this myeloma,but Slim is one of the unlucky ones.
You might think I am hard with some of my reply,s but you have to look after yourself,if you become ill who is going to look after Ian.take what ever they offer you,by the time all this is finished you will need all the help you can.Eve
Hi Leedslass
Sorry but I do not know you name,I see this is the first time on this site,how you ave managed without it,I do not know.
You need some form of help,but only you can decide,as good as family and friends are,they have no idea,what or how they can help unless you tell them.
This illness brings depression with it,not just for the patient but for the carer,it,s recognising that is the problem..
You have to make time for yourself it might sound selfish but you do need time away from the Myeloma Bubble,even if is just a coffee with a friend.
I also think you have to be direct with your husband,if he is depressed get help,if it is the fact he is in a wheelchair and does not want to go out,then make plans to go out,if he will not go,leave him in and you go.his choice,you will have to toughen up.
There is no reason why you both cannot have a life,may be not what you expected,just different.Eve
Hi Babs
1 year it soon passes,enjoy your holidays ,after last year make this year count. I envy you going to Australia ,we always said we will go there and hire a motor home and do the figure of eight.
Best Wishers Eve
