Hi Alison
It is my husband who is the MM patient he is doing much better,just wish I had some dex to give me some energy. lol.
Good idea to ice stem cells,never thought of that,Slims lungs were not good after septic pneumonia all talk of SCT postponed now on Velcade.
Anyway so nice to hear you are back at work and doing so well,you must be very pleased to have your life back.I do not know if you had a chance to chat with jo on hear,she has problems with kidneys and chose not to go for SCT.
Let us know how things go,it is so nice to hear good news.Love Eve
Hi Mike
Nice to hear from you,I understand were your coming from,but some things need to be said and told,for people who are here for the long haul,but I can understand your concerns,specially as you are the patient but as a carer,it is good to know what to expect.
having a macabre sense of humour has helped me.
Slim has been in treatment since February had no remission and treatment is on going with Velcade but we will get there, we dismiss negative thoughts,or as tom says on ward and up ward.
I wish you a long remission Mike ,Have a lovely time .Eve
Hi
I have had the same problems but only sometimes computer also very slow,it also depends how I try to get into site.
If I try to get in from last log out that is retained as favourite I have had something like: opps google chrome cannot find site,server is not posting,when I try again through another avenue I usually get in.Eve
Hi Jim
Nice to hear from you,It is all a bit mind blowing to begin with,but it does get easier.My husband got CTD side of trials.
You just might sail through treatment and be on your feet in know time,every body is going to tell you listen to your body,it is important.
Jim watch out for Dex it does change your moods,make sure the person closest to you knows,so they realise its the medication.Also steroids mask infections,if you do your own ops and just keep a book with,bp,temp and weight and any side effects,once a week will do unless you are not feeling great,then temp,should be watched.When you go for bloods every 21 days,they can see straight away how you are responding.
I would agree with you no matter how good family and friends are,you can only burden them with so much,
On here you can ask about anything,there is always some one who is a step in front of you,taking the same path,but remember everyone reacts different..Good luck and sorry to hear you had to have RT but it does the job and stops the pain.Lots of people on here have had it before chemo. eve
Hi Min
Thank you for your reply,I must admit thought the DPA applied to paper work work as well as computer information.
What I was trying to emphasise was every one has the ability to know more about Slims illness than himself.
(As for to much information is not good or accurate) Well I would have to disagree,I think if information was more forth coming,from doctors or scientist we would be better informed and have better knowledge of treatment and expectations of this illness.
Infections and DVT ,can be prevented if caught early,I know we cannot wrap patients in cotton wool,but we can be made aware of early symptoms.In my case I should have made sure that Slim was seen to properly on Easter Saturday when he was discharged,but because lack of knowledge and having the attitude doctor knows best.It nearly cost Slim his life,and he was in no condition to help himself.
Dai I am sorry to hear you are ill,please look after yourself first and fore most,May be you could do a speech that Craig could read out,or anyone looking in,could step into the breach.
Is there a local MM support unit in your area??
I had my own experience of care at the same hospital as Slim yesterday.
I had minor surgery in the day unit,very impressed.I was dreading the conveyor belt experience,I was amazed at the speed and efficiency.Names are called space allocated,informed of procedure,see doctor and anaethetist(spelling?) ,procedure completed recovery time then out.the whole unit was very impressive,and staff worked as a team,we might have looked like drones but into days world,were efficiency money and care are important,they did an excellent job.
Best wishers to everyone Eve
Hi David
Can you just visualise the file that belongs to you.
The consultant reads it
His secretary can read it because all your results go through her
clerks can also read it,
every department that deals with individual parts of it can read that individual part.
when you go into hospital any nurse,o/t physio,doctor has access to your file its left on ward,the only person not allowed to look at it is YOU.
Even the receptionist can see when you are attending hospital,the name goes in and joe bloggs,comes up.
ethically this should not be done,i accept they have to have access to run the departments,but were does the patient come in to this equation.
Some times I feel like taking a pound out of my pocket,because I have asked for some results,and have not received them,and feel like saying to them there,s a pound if your worried about the cost of paper.
As you have guessed,it,s my bee in my bonnet,I once looked in Slims file in the hospital to find out the name of a doctor,because the information i received from a nurse was wrong,when I asked for the doctor,s name she said she did not know,but all she had to do is ring down and ask for consultants registrar name.I was informed the file was private,so I asked how come everybody else looks at it,but not the patient,she hid behind the dater protection act.
I suppose we can blame the government,does animal farm spring to mind.Eve
Does anyone know the shelve life of VELCADE???????
Eve
Hi Sue
Had to look up fish genetic testing,I actually thought this was being done in this country,as part of trials but not individually ,would be interested to know more about it,do you have much info on it? Eve
Hi Alison
So nice to see you posting ,and to know your kidney problems were resolved,good to hear you are back at work.Eve
Well I think you are all brave,you all deserve blue peter badgers just for going through this treatment,It takes guts,and to remain so cheerful and make people laugh,if you could bottle it,it would be a sell out. Eve
PS Tom;-) I am thinking he might like some of my fat
Hi Sue and Tina
I have also been wondering how you have been getting on with these trials,and wondering about a few other people on here who are not posting at present.I think it is sad,that you feel you do not like to post with news that is not so good,this to me is what this site is about,be it good or bad,people are on here for help and to help.Tina was not posting much when I first came on here.I caught the very end when your husband died.It is good that Tina has stayed on to give people some insight to treatment and to care about people who are going through the same journey,.
As Tina says pp not moving upward,lets hope this is a good sign and given time,side effects slow down once the body gets use to it.
I know its upsetting,Slim was decorating the carpet with urine bowels and bladder for a short while,the carpet had to go,I put it down to him being so ill,rather than something like spinal cord compression,and he is ok now.
Keep posting if it helps you.Eve
Hi Jo
Sorry for not replying before,been a bit busy ,with trying to get soft furnishings as decorating finished,only trouble is shows up rest of it:-P
I would like a copy,thought they might put something on here about it,Debs went but she sounds very busy.It would be a GOOD idea if Myeloma UK did videos of INFO days,for people like us who live so far way,its not just the travelling its getting across London,plus the fact that Slim cannot do the length of time required with out a rest.
Slims doing much better only problem being when he feels good,he does far to much,He has gone from 91/2 stone to 11.That in its self is good.Turn my back for 1 minute and find he,s doing to much,so hard for him,he says he feels so useless.
Chemo brain,has a lot to answer for,memory has gone to pieces,very hard for him,makes the best of it,but He knows it is effecting his memory,I just try to make light of it,tell him it will get better,He has always been a man who loves crosswords, telegraph gone now does mail easier.
We wait to see what next week bring,we both have appointments on Monday bloods for Slim. on Tuesday for cycle 5 Velcade and Zometa,then 2 trips on Friday for bloods and Velcade,and may be we might get an appointment to see Consultant to find out results.If we do that,s 6 appointments in a week with mine as well.Have a talk about the cd if you manage to get copy.Love Eve
PS dog is a he Oscar,he is a cairn terrier,but he is are Battersea Brat,a lovely rescue dog ,had him for 10 years now.
Hi Dai
IT looks if Craig is the man that gets bits of my husbands body:-/more than I get at the moment LOL.
On a serious note I got the impression,that bone marrow bloods and urine go to Birmingham,which does the testing on Mm samples could be wrong!!!
If you want to speak to him look at third posting down on old correspondence will give you qualifications and tell you were he is in Birmingham,which in turn you should be able to phone him at work.
If I think of anything before the 8 I will let you know the posting by Ellen was interesting,have you put any questions to Ellen.? love Eve
Gina
just to say good luck with the wedding,hope you have your wish come true.
If it is any help,A friend of mine,who,s husband had been told no more treatment,wanted to go on a cruise all though very ill,just wanted last holiday,doctor,s gave him steroids and he managed to have that holiday .just a thought? Eve
Thank you Ellen
For taking the time to give me a general explanation,I do realise you can not comment on an individual case,what you said I found very helpful,but brought a few more questions to mind.
The hospital my husband attends does have a PET scan also MRI,if some one had MRI scan on his spinal column only.How would it compare to having a PET scan would this have given a better indication of MM in the whole body,?
Regular BMB :If BMB cannot be considered to be an exact reading,and a patient is considered to be non- secretory and bloods have remained roughly the same through out treatment,what test can be done and how often should they be done,especially if a higher measurement of mm has been found in bones after the first round of treatment.?
I hope you can answer these questions.hypothetically of course.Eve
I will settle for RED just remember it was a LIVERPUDLIAN who lives in the south and loves red wine and the colour red
IAN
LOL EVE
