Hi Cathy,
Well Ivan is on his way,it amazing how quickly they recover from what seemed at the time,as will he recover.
Give it time Cathy he will get there,you just make sure you get some rest,when he comes out,it will get harder for you,as cleanliness,washing and cooking will take up you day,so try to have a rest now,if anyone offers help take them up on it,it all helps. Eve
Hi Judy
It is not unusual to feel this way,after a few months any one will tell you it is part of the grieving process.You want answers and are entitled to ask questions.
I have always made a point of keeping records of blood results as they can tell you a lot about a persons condition.
When you saw the consultant on the Tuesday who told you your husband was in remission,were there not bloods taken before consultation!!!!!!!
Did your husband have an autopsy !!!! did they give you an explanation other than he had no platelets!!!!Why did he get taken to hospital.!!!
Did you see the consultant after your husbands death for an explanation!!!.
Platelets take a long time to reproduce themselves ,there is a condition were the body needs help to produce more injections or a closer match of platelets are needed.
If the neutrophils are down below 0.5 then you are considered to be neutrapenic and need treatment.
I would be asking to see the consultant take some one with you,and ask questions,better to know than keep asking your self WHY.
I hope this is some help,it might be worth ringing Ellen,who cannot comment on your case,but will be able to tell you some facts.
I myself have taken Slim into A&E and why they dithered around waiting for results of blood test,I have had to stand my ground and tell them to give him antibiotics,as time is of the essence.No fun standing up to a doctor,but learnt my lesson from previous experience when they turned him away from A%E and admitted with septic pneumonia.9 days ITU.
Hope this helps,will not bring him back, but should answer WHY.Eve
Hi Mari
How are things going???? You must be back at school now.Eve
Hi
I just wish they would do one south of London,just to far to travel, bad enough having to go to Kings,every few months.So unless it comes my way will not be going to info day. Love Eve
Hi Everyone
If it is any help to anyone, I tend to look at peoples profiles before I reply:-P
If some one is not prepared to identify themselves,it is questionable,some of the posting is more than questionable Dai,its sick.Eve
Hi Sarah
This is just to say hello,sorry I cannot be much use to you,Slim never did smouldering,went straight in with AKF plus hypo-calcaemia,.
Lots of people at all different ages with SMM ,so I am sure you will get some reply,s you could try the under fifty,s lot,you have to ask to join.
Hope you stay smouldering for years and years. Eve
Thanks Tom
Time will tell,Slims got a chest infection at the moment,and being sick a lot,every time I think he is picking up,down he goes.At least he is holding his own at the moment
I keep telling him about you,how good you are doing,all that vodka you drink,2 years on and going strong,he,s jealous Tom lol.love Eve
Hi Eva
Thank you for the information,it all helps,we are not private,if we were I think I could argue a good case for having some form of maintenance,When Slim was going through his treatment with CDT,everyone thought he was on his way to remission,as his blood results have always been good,and his kappa light chains were well on there way down,only when they took a BMB they found his Myeloma had increased to 80% in the bones,So nearly six months of treatment had been wasted,It still took Velcade 6 cycles to get it under control.Over all this is a lot of chemo for the body to absorb,I feel the damage its done to achieve remission has to be questioned,I will never have,Slim back as he was,yes he is alive and I am grateful.Physically and mentally he is not the same man.
My way of thinking is if myeloma came back,would his body stand another round of Chemo,or would he be better having a maintenance drug now,to hold
the myeloma back.
As it stands at the moment,he has said if he was given the chance for a second SCT,he would not take it,the way he feels he would rather have extra good time now instead of possible taking a year to recover,he is 9 months down the line from remission and was doing very well until SCT,which has put his health back to last year.So we just have to hope for a long remission to feel this whole journey has been worth while.
As for maintenance,he has just been unlucky, Eve
Hi Gill
Matty had a long service,but I do remember some were in the middle,she said anyone who had there own believes and thoughts,were welcome to say a pray or have a few minutes silent to pray in what ever they believed in.!!!!
It is very sad,that people cannot gather to say good bye to a person ,in there own way,Gill you do not even have to have anyone to take the service,you can do exactly as you like,My own believe is why have someone who does not even know that person,talking about them!!!!!.you do not need this hassle.
I would Say if a Mum of 80 odd cannot say what she feels for her believe for her son,it,s becoming a very sick place.you do not need this hassle.
my thought are with you.Love Eve
Hi Benz
Just to say welcome.
Min you should know Tom by now give him a Vodka and ask him to do any impersonation ,he could even sound like me,Ore rite there kid,us scoucers never went to school.
Good job we can laugh,in the position we find ourselves in.Eve
Hi Helen
Thank you for more information,it all helps,I agree with you,we know it,s a trial,but cannot see it being with drawn if its working.
As you know Slim has already used Thalidomide and Velcade,and in general Is not in the best of health,with lungs and kidneys.So my way of thinking if any drug keeps Myeloma away it must be a good thing,He has nothing to loose as he will not have any treatment,at least with the start of the trials,everyone had treatment,of one kind or another.That,s why I consider,at this stage with two drugs available ,they have ADDED Zolinza to the trial,why not REMOVE no treatment from the trial??????.
So yes if I can find anyway of getting Slim a maintenance drug specially as when the Myeloma comes back,the chances are it will be well established as it now only shows with a BMB,all though I was told they no longer stage Myeloma,Slim was at stage 3,so I want to keep the beast away as long as possible.
Lets hope some were along the way more trials are available on a maintenance bases .Love Eve
Hi Dai
I see were you are coming from Dai,and yes randomisation is the last part of the trial,which has been going on for some time,that is one of the reasons they have now introduced Zolinza which has been used for main stream chemo.
As you know information from America is saying a little and often to kill Protein,this is what Zolinza does.Revlimid now is mainstream for treatment so is also being used as a stand alone drug for maintenance.There must be some results as to people who do not have maintenance against people who do,??
I do think maintenance is the way to go.,but that is just my opinion.
Yes I agree it is self-recovery,but most people with Kappa Light Chain,are able to tell if they are still in remission by bloods plus kappa light chain results,this is no longer the case with Slim,so in Slims case it would be how he feels,pain to judge what is going on in his body,consultant words not mine,which does not exactly have be cheering from the roof tops!!
I would love to never have to set foot in a hospital again,I accept that people have this fear of the ugly beast rising it,s head again,but if there is a drug that will help to keep it away then this is the way to go.
My question is are there people out there not on trials who are on any maintenance drug????I think with all the knowledge that has been gained from the trials ,maintaining remission should be priority,not lets wait to see when it comes back. Love Eve
Hi Everyone
Well Slim has been randomised for no treatment,which in some ways leaves me wanting to ask questions.???????
As Revlimid is now been accepted by the powers that be as a treatment.If Slim came off the trials could he have it as a maintenance treatment????
Is any one on here not on Trials but on Maintenance Treatment??????
Does any one know any results on people who have Maintenance treatment and those who do not.?????
Ellen if you are looking in,and have any in knowledge or answers,I would be grateful.:-)
To me this does seem like a bit of a guinea pig situation,!!!!
I could understand it if they had 3 people all with the same Myeloma plus at the exact same stage plus damage,that to me would seem a good equation,
But I want the best for Slim,and to me he has been unlucky,so it looks if we have to find another path. Love Eve
Hi Gill
Well you are on the start of another journey,this is the time to be a bit selfish,this is your husband you do exactly what you want,and arrange a funeral that will please you.
my daughter had a humanist funeral for Matty,at Bobbins,I have to say the woman who did the celebration of Matty,s life was excellent,she had phone calls after from to people who attended to say,how much pleasure they received from her service,I would recommend it to any one.
What can I say about Stephens daughter,in many years to come she will have lots of regrets,but she will have to live with them.It must be hard on Stephens Mum,i am glad to hear he will be going out in style.8-)
Good luck Gill hope the day goes well,and the same apply,s here Take one day at a time,chin up and be strong.All My Love Eve
Hi Mavis
I do not think you can be to relaxed about constipation,as it will create all sought of problems.
Slim got to the position needing ,Movicol Laculose plus Senna tablets,even now I nag him about his bowels,Movicol Twice a day will help your bowels to work at moving the contents,rather than just getting rid of it,so the bowel will work naturally.Although horrible to take its worth taking every day.
Water and mobility a must. Hope this helps.Love Eve
