[eveParticipant]

Hi Paul
It might seem like a long time to you,but if you look at the big picture its just a blip,I think you will sail through you are young healthy and fit,but do not forget to listen to your body.

As Debs says its not a walk in the park but it,s do,able.

The hard work will be when you get out,mind over matter,but you will do it Paul,Good luck if you feel like having a moan on your lap top while this is going on,do so,and we will tell you,not to be a silly b-u-g-ge-r,LOL.

its going to be worth that extra time. Eve

[eveParticipant]

Hi Charlie

Welcome to the site,Its my husband who has MM.

Yes it is very confusing to begin with,but you soon get use to all the information,you have got books on Myeloma my advice is read a bit at a time,it will become the norm soon.

Lets start with transport,you can get financial help,also you do not say your age,but you will be entitled to attendance Allowance and a Blue Badge,you wife might be entitled to carers allowance that is means tested.So try not to worry about the financial side,your life is more important.

You have to decide yourself if you want to go on the trials,speak to your doctor,I think everyone on here will tell you,it gives you more options when it comes down to future treatments.
MX1 trials you are picked by a computer to have CDT or RCD.
Depending how you respond,
you could go straight to Stem cell transplant
you could need Velcade to reach a position of remission,then SCT.
This is what the trials offer.
They will tell you Myeloma is an individual disease and people react different to different treatment,also the outcome again is not the same for everyone,
But it does give you a better chance.:-)

I can only tell you my husband had CDT 6 cycles after he had a BMB the results,confirmed he needed Velcade,if he had not had another BMB for the trials,they would have thought he was in remission after CDT. As for him a BMB is the only way to tell how this disease is effecting his body,but I must stress he is a bit unusual.

Most people have treatment sail through,have SCT and have a longer remission,I believe there is a Myeloma Group based it Southampton and a few of them have been going for 12 years,might be worth talking to some of their members.I am sure Southampton Hospital or if you look on this site or get in touch with Ellen she can let you know who to get in touch with.
I hope this is some help.Eve

[eveParticipant]

Hi Jo
Never been to the IOW but looked at it across the bay,have some friends who have lived there for years,they chose there because of the sailing.

Glad you had a great time with your grandson,I bet it,s home for a rest now.I just love to hear about you planning your next holiday,I am sure it,s not too far away. Love Eve

[eveParticipant]

Gill
How are you doing???

Have had you in my thoughts did you get to France for that holiday Eve

[eveParticipant]

Hi Kevin
Let us know how you get on,it is interesting that you are having CDT again!!!. I suppose the fact that it was 2006/7 since you had it last time.might make it work again.As you say it will leave you Velcade for another time.

Slim used up CDT plus Velcade just to get to SCT.At the moment waiting for BMB,to see if it has worked.

As for your decision to go down that route and the consultant agreeing,I can only think you have a very open minded consultant,who does listen to you.I can see why ,because it leaves you Velcade for another Day.So good luck Eve

[eveParticipant]

Sue
It,s the other way round,everyone on here will be thinking about you,It is so hard to accept and it should have been your consultant telling you there was no hope,it might have given you time to accept and come to terms with his death.
I hope you both had a time to yourselves and a peaceful end,accepting that some times,there has to be an end,when some one tells you bad news,you tend to latch on to key words,but you missed the PCL,and it sounds to me as no one explained the outcome.Very sad.
Look to the future remember the good times and try not to dwell on the bad,my thoughts as a carer are with you.Eve

[eveParticipant]

Hi Helen
I think a lot is post code lottery,in one way we are lucky because we do have the trials in SEK.and there are lots of trials going on from here at the moment.As a cancer patient Slim has the usual 24 hr number to ring,They in turn ring doctor and everything goes from there.So no problem:-P

If you look in the carers section subject 100 days,it might explain it better.I know from previous post how bad SRK is to other counties,my attitude is at least we have the trials and many things need improving,the problem is management trying to make big cuts across the board and different departments fighting there corner,it is very political.I would love to be a fly on the wall in the doctors lounge,8-)

I found out from Kings the name of the Myeloma nurse and she is based in Margate.Eve

[eveParticipant]

Dai
Slims writing home about his HL,4 hour job,veins thinning as HL progressed,then getting it round a bend,head honcho called twice,Slim coming up looking like death warmed up,saying he will never never have that done again.( may be that,s why his HL is still in).
I think it does vary from patient to patient,but as Stephen has had one before he should be ok. Love Eve

[eveParticipant]

Tom
You do not need luck,I can see you standing there with a big red box in front of you.Got to give them an angle,EG terminal cancer,want to take the wife on holiday of a lifetime will donate some money to Myeloma uk for all the good work they do.Can I fill your CV in for you LOL:-P 😉 🙂
I forgot the best bit,good looking guy with a cheeky grin. Love Eve

[eveParticipant]

Hi Helen
Just to save any mixup its not Kings I am talking about when I talk about 1 designated nurse.I am talking about the south east England corner,Margate,Canterbury and Ashford if the information I was given is correct they only now have ONE designated Myeloma Nurse,use to be 4 and because of cuts it,s down to one. Eve

[eveParticipant]

Hi Tina

A holiday is what you need away from the Myeloma Bubble,Lets hope for 10 days of sunshine and you coming back in the right frame of mind to tackle the next stage.love Eve

[eveParticipant]

Hi Everyone
Amilea in UK first line treatment for people not on trials use to be CTD then SCT or not,then no maintenance!!!!,do not know if its changed but trial people had a lot more options this is why trials are best.

Helen it is finding out information that is my problem,I do try to do as much research as possible,as nice as the nurses are they do not have a great deal of current info that does not effect there working,I had a grand example of lack of information this week,rang Kings up,because Slim is very slow recovering from SCT,told by them to speak to my specialised Myeloma nurse,told them never heard or seen one in 18 months.Kings got back to me with a name,we have ONE specialised Myeloma nurse between 3 hospitals,used to have 4 but because of cost now have one.

Once you enter the field of SCT,local hospitals are not in the same league.
So gathering information on possible future treatments and new treatments leaves me with very little options myeloma UK site or the general net.

This has been a very informative section,one of my reasons for asking is Slim will be coming up for randomisation if SCT has worked. Love Eve

[eveParticipant]

Hi Andy

So glad to see thing are going looking up,I would go for all three big time, I know even without MM back problems in the low spine,cause a lot of problems so I hope this treatment does the job,and gives you some of your life back.

[eveParticipant]

Hi Mari
Yes they do not hang round at Kings,Slim was due the same ,Hickman line day 1,then other events took over and he came out of hospital.

So glad you are managing that holiday,it will be the best thing in the world to build Stephen up ready for his SCT,and give you a well earned break before you start the next round.

A few months ago things looked bleak,and here you are with every hope of buying more time,I think we should coin a phrase,Never give up!!!! Love Eve

[eveParticipant]

Hi Dai
Have a nice weekend,summer is suppose to be on it,s way;-)Eve

[Author]

Posts