[eveParticipant]

Hi Mavis
Thanks for your wishers.

No such luck on the bloods,came out of hospital on Saturday,went yesterday to check bloods,phoned he needs platelets so back in to day,then check bloods again Wednesday,Then 86 miles to Kings Thursday.
Tried ringing Kings yesterday as Canterbury could not answer a question about injections,still waiting a reply.

This 100 day rule makes you feel in limbo,with no support. love Eve

[eveParticipant]

Hi Jen
You could be talking about my husband,except he had tumour on back,plus lesions on skull and shoulders after first CTD his bone marrow went up to 80%,so started Velcade which took it down to 6%,it was still going down,then he had his SCT and has come home,but is having a few blips on the way.

Slim has a chemo brain,I drive most of the time but when he was well he drove,think you have to be careful because of insurance,I drive:-P

you have to stop and think about the drugs he is taking,not just chemo,Slims on a high dose pain relieve.Hope this helps Eve

[eveParticipant]

Hi Helen

I know,its just he has been here before and it took a lot out of him then,I was told then,he may never get back to the man he was,and they were right then,but give Slim his due he is a fighter,so fingers crossed.
I think it,s just me feeling sorry for myself,have given myself a kick up the bum:-P and Tom cheered me up 🙂

Going to crack on with the rest of the day.
So glad you enjoyed NZ I had jet lag for about 5 days on outward but not inward but we did 3 months out there so plenty of time to catch up. Love Eve

[eveParticipant]

Hi David
I would agree, it just makes me wish I had put a high value on are years together 30 years together and 1 year married,I ask myself why we need such a wake up call as Myeloma to value what we are loosing.
I am feeling sorry for myself better give myself a kick up the bum.Love Eve

[eveParticipant]

thanks Tom

It just what I need at this moment,a lovely man cheering me up and making me smile:-) 🙂 🙂

No they did not chuck him out,i think they have done all they can for him,because of this 100 day rule we are officially under Kings which is 86 miles away,they will keep looking at his bloods to see how he responds!!!!

I bought factor 50!!!! wish he looked white,but he does not.
thanks again for your thoughts it made me smile.Love Eve

[eveParticipant]

Hi again Jeant

I was just looking through the post and thought I sounded very harsh I did not mean too, and must apologies to you.you are very worried and did not need me to tell you there is no answer.
The CRD has had good results its just about finding something that does the job,all the chemo,s have side effects and because people are individual the drugs react different on everyone.
Sorry if I offended you,did not mean to be so sharp,looked at the time i posted,and I had a bad day with a grumpy old man,and have not slept much for the last few days,as a carer you just get past the sleeping stage,and thats were i was at that moment.Love Eve

[eveParticipant]

Hi Jo And Liz

Well my grumpy old man rang me at 8am yesterday to tell me he had been discharged so off I went to collect him,but when i got there,the doctor had made a mistake on paper work,so he had to be re discharged again by 11 he was loosing the plot,so all for a mistake in the paper work,Slim discharged himself,they were desperate for his bed any way,I confirmed I would be a good carer and take him for bloods on Monday8-)

I still think there is something not right as all his blood works are off the charts,but they have pumped him full of fluid,bloods, platelets and antibiotics We are just enjoying not being shut in a room and enjoying the sunshine.Love Eve

[eveParticipant]

Hi Jean

Once when I was in the car with Slim,he was getting very jumpy and very annoying about my driving,he use to drive most of the time,i just came in handy when he had a drink and could not drive,but on this occasion we were on are way to hospital and he was so annoying i stopped the car.

He told me not to go any further as the car was going to crash,I calmed him down,and after awhile he realised all these feelings,were due to the drugs,even now I think he has a few problems which he does not tell me about.I put it down to a chemo brain,and I do not think I will ever get the man I new completely back but he is still here and we have are good moments some times.Love Eve

[eveParticipant]

Hi Everyone

Helen it is a world wide Trial but it is not in all area,s of uk. I know in the South East Dr Pocop fought to get these trials allocated here.If they were not here Slim would not be on them as the nearest place that had them was Kings in London.86 miles away and sick patients would not be able to manage it.But you have the same treatment CTD or CRD then Velcade,but not the maintenance ,you would get nothing until it rear,s its ugly head again.

David i know you must dread every 3 months,but the latest dater shows patients are looking at 7 years,I do not think it,s good to be given a time line.I think it depends on the aggression of the Myeloma and how quickly it,s caught,Slims was advanced and hard to contain,so i will be grateful for any extra time. Love Eve

[eveParticipant]

Hi
Oncologist this is a blood cancer were is the heamotologist ??????

[eveParticipant]

Hi Jeant
My name is Eve,My husband has had CTD plus Velcade them SCT,I do not know any back ground,so it is very hard to make any comments.
The question you should be asking yourself is how much do I want to know,???

The experts have to answer your questions
So you must decide what you are going to ask.
If they are treating your husband they are looking for some thing that will work.Myeloma is so individual ,it is very much trial and error.

I often think people who come and go on this site,are looking for some thing that does not exist.We all hope for a cure,and we wish to help the trials.Some people sail through treatment,many do not,We will try to answer your questions and help and be there for you. Keep in touch Eve

[eveParticipant]

Hi Jean
Here are some tips that might help you

The anxiety is fairly normal,kicks in over silly things,Dex moments they are convinced they are right,so just remind him when he has taken his dex.Ormake a chart out of tablets then tick when anxiety starts tick under it,and you will see a patten emerge.
Massage seemed to help Slim and some one told me that Palmers cocoa butter formula helps.Nystan for sore mouth.
I think unless he is finding it beyond him,they know about all these things.Jean I found out Amitriptyline which my GP prescribed 5mg is a known help for PN and Kings prescribed 25mg and Slim has not had any PN since!!!!!!!

Finding a hospital that knows all about Myeloma and PN like Kings makes you realise the difference in treatment.Eve

[eveParticipant]

Hi David

People on the Myeloma trials X1.are randomised by a computer after SCT.for maintenance therapy or no treatment,so it,s the luck of the draw.Great fun it is not.Love Eve

[eveParticipant]

hi Karen
If your GP did an urgent referral you should have been seen with in 10 days.
Get on to your GP tell him that you have not had appointment through.This is the procedure.

Karen your pains could be a number of things,but if you start feeling sick or are in sever pain,you could have problems,after what happened to my husband I would tell you to go to A&E and tell them you are a suspected Myeloma case.

Hope this helps.Eve

[eveParticipant]

Just a quick reply

Min i think if you are not in a hospital that is dedicated to Myeloma your chances go down,as i said he is on a good ward fit for purpose,but when he was in A&E they were going to put him on a general ward,I told them side ward or private otherwise i take him home,someone got chucked out to provide bed.
The fact is the hospitals are over whelmed,lack of staff with some who are not dedicated,I trust no one.Lots of politics

Slim did not come home they misjudged by hours how long 3 units of blood,1 unit platelets plus,antibiotics would take and for some reason they do not give bloods after 10pm:-P,(says to me lack of staff on acute ward},

Any way drama should be over tomorrow,I:-) will have my grumpy old man back,have decided to get a swear box,going to save a lot of moneyEve.

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