[eveParticipant]

Hi Teresa

How are things going,I should imagine the last few days have been very busy,I do hope you have had time to look in here and realise how many people have you in there thoughts.

Take that walk down the garden,I hope it will bring you some comfort,look forward to the grandchild Peter would want you to find that strength,Love Eve

[eveParticipant]

Hi Ali

Your mum knows her own body best,but I would impress on her about taking anti sickness pill 15 min before she eats,mainly because once you have been sick with a certain food,it puts you off it for a long time,so a food you enjoyed becomes a food that made you sick:-( Love Eve

[eveParticipant]

Hi Everyone

Well Slims getting there,as he improves I worry less,will be happy once he has BMB and results as we have been told this is now the only way to tell how the myeloma is in the bones:-P so it will always be a bit of a worry.

He has his line out on Monday and Wednesday it,s up to London never ending'

We thought once the 2 days for blood test was finished,we would have a bit more freedom,but August is filling up with lots of medical appointments,Slims general health has taken a dive with having SCT this I did not expect,but its because his system is not functioning fully,he has had to up his pain relieve to function,
London on Wednesday,going by train,if he is up to it,otherwise I will be driving in.Eve;-)

[eveParticipant]

Hi Dai
You sound like my grand daughter,her exercise is keeping her eyes open to watch the Olympics.:-)Eve

[eveParticipant]

Hi All

Penny watch out for the Dex as it can hide infections,its no fun if it gets serious.As for AA there has been a big discussion in the new comers section,might be worth a read.

John I am amazed you are working at all,with that combination of drugs,but if need must you always find away,when you are self employed you cannot afford to be sick:-P
Good luck John. Eve

[eveParticipant]

Hi Ali
Well this is it,no going back now,your mum went into this being very strong,so you keep your chin up and keep her spirits up.

If your mum keeps being sick,and cannot keep tablets down they will use a driver,her throat is the first thing to get sore and as Tom said mouth washers as much as possible,saying that Slim could not do even that,smells were enough to start him vomiting,its nothing the staff have not seen,and they will be on the ball.

The smell of sweet corn is the first thing that hits you,just get your mum anything she fancies from the kitchen,and just be around for when she keeps waking up. Love Eve

[eveParticipant]

Hi Wendy
Bit of a Bummer after such a nice holiday and to come home and have your kappa light chains going up.

As to having to wait a couple of months to find out what is going on,to me is all wrong,but saying that Slim is in the same boat,for a long time now the bloods and kappa light chain test have yielded results that have nothing to do with the condition of Slims Myeloma.So we are now use to the fact that the only way to tell his condition is BMB.:-( saying that we feel more confident in BMB results and they do not mind doing it because they get BMB for trials,so poor Slim has had about 5 and goes for his 6th one middle of this month:'-(

So when Slim started remission then have SCT and wait 3 months for BMB its 7 months of worry,and making a judgement purely on bloods which have always showed good responce,kappa light chains that will be tested in August and last BMB,and the powers that be wonder why you worry.:-P

I would like to see PET scans done as that would show any,cancer out side the bones,they seem to use Pet scans for Lung Cancer,but not Myeloma,
I could say try not to worry but you will Wendy,I will say why not push them ,they can only refuse you a test,what have you got to loose.Eve

[eveParticipant]

Hi All

Wish I had known about that med for hiccups ,had Slim doing it in his sleep,drove me mad,now it is just every now and then usually when we are out,and things are very quiet,and out of the blue one loud hiccup and the whole world turns round.:-P Eve

[eveParticipant]

Hi Andy
If good thoughts good get you through this,there are plenty on here for you,as to being excited or worried,could you have been any more worried than you were with not much progress!!!!
Make it Excited you are going to see one of the people who know all about this dreadful disease,who works in a hospital were trials are being held.

So come on Andy,you are going to beat this,and be heading for your SCT in no time,do not forget your questions,if you cannot get your pp down,how about SCT,!!!!
Good Luck Eve

[eveParticipant]

Hi Teresa

I am so sorry Teresa,I hoped for your sake that Peter might live long enough to see the new grandchild,but it was not to be.
I hope Peter had a peaceful end with his daughter and son and yourself,It is sad that people are taken from us when they have every thing to live for,and my thoughts and good wishers are with you.

Try not to escape this Myeloma bubble for awhile,because it will bring some comfort to you,and might help you with coping with your loss.
I wish I could offer more.Love Eve

[eveParticipant]

Hi Chris
Congratulations,that is good news plus brings a lot of hope to people who are just starting there journey.

We could do with people like you posting more often,but i suppose once you are out of the myeloma bubble,you do not want to keep looking back

Thanks for you news Chris. Eve

[eveParticipant]

Hi Alex

First may I say welcome ,its the old saying no one wants to be here,but this site is very informative,:-S
Second know very little about padimac trials except its not in SE Kent and if my husband wanted to go on a trial like this it would be constant visits to London.saying that if needed we would.:-(

My husband is over 18 months down the line with Myeloma ia on Myeloma X1 trials and had CTD for 6 cycles it did not work,his Myeloma went up to 80% in bones,had 6 Cycles of VELCADE and it knocked it down to 6%,he went on to have SCT and is now 2 months post SCT,not in the best of health but we are waiting for BMB to see if it,s worked and hoping he will improve over time.

Yes this disease is S–t.but at the end of the day it is treatable some people get many years and it is increasing, I honestly believe your attitude of mind will help you,we have watched people on here give in from the start,other people still going on many years later it,s your choice.

I do not often tell people to go to American Sites as some are frightening but Myeloma Beacon have a survives site read some of there stories 20 years 25 years,it gives you hope for the future:-D .

As for my husbands he was diagnosed late,but he is alive and enjoying life,not the quality we had before,just different. Eve

[eveParticipant]

Hi Gina
Lovely to hear from you,I hope you are enjoying life,know you must be missing mum,first year the hardest.

As for Slim feeling lucky that we have got this far,has had to up his pain killers but better to have some quality of life,than be constantly feeling bones aches and pains.the damage plus other complaints coming to the fore.

End of August and we should have some idea,:-) love Eve

[eveParticipant]

Hi Dai

This is a roller coaster ride for you,feeling better on Myeloma Drugs,yet having problems with pesky bugs.I think you feel it more when you have been having a better quality of life,and something like this starts.
I know no one wants to take more tablets,but maybe antibiotics long term might be the answer:-(
I hope they sought you out soon,so you can enjoy this thing we call summer.Eve

[eveParticipant]

Hi Charlie
Three months ago we lost a grandchild Matty he was sixteen,his sister who is 10 years old put every thing into perspective,she said to her mum everything will be normal but different.

I honestly believe this sums up your position,what seems awful at the moment will seem normal after a while just different.

You will make friends in cyber space,you will look at things through the eyes of a patient,you will appreciate every day,have regrets on things you have not done,you will make the most of your family friends and appreciate what you have.normal but different. Love Eve

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