eve replied to the topic Bence jones 24 hour protein test. in the forum Newcomers 11 years, 8 months ago
Hi Alco
You can not base having Myeloma purely on urine,other factors are taken into consideration.it is not worth going into unless you are diagnosed with myeloma,low white blood cells can open up many problems,so do not go scaring yourself thinking you have Myeloma it is uncurable.
Go back to your doctor or speak to a well qualified…[Read more]
eve replied to the topic Carfilzomib (Kyprolis) & Myeloma 5 Trial in the forum General 11 years, 8 months ago
Hi Dai
It is good news,I hope if the medication you are on does not work I hope you get this one 500 people only,as you said it has to show in urine,
I worry that as Slim did not respond to thalidomide how well will he do on Revidimide ,and if the same conditions apply,he will not qualify for the new trials.
Any one heard from…[Read more]
tom replied to the topic How do I fill this empty hole in my life? in the forum End of Life and Grief 11 years, 8 months ago
Hi Jackie
I am so sorry you are finding it difficult to cope at this time my heart goes out to you.
I am fortunate to have never been in this place that you find yourself in so I cant say "I know how it feels" as I cant.
I am doing good but that said Like Dai I talk about it not only to my wife but my Sons also that way their will be no…[Read more]
tom replied to the topic my mum has myeloma. first time post in the forum Newcomers 11 years, 8 months ago
Hi Nerys
Your more than welcome, and as you say its good to hear about remission and long ones at that 😀
And just to add to the Good news I have been in remission since 2009 and drug free since 2012, and am selfish as I am asking for a longer remission 🙂
Good Luck to you Both
Love Tom Onwards and Upwards xx
tom replied to the topic Light chains down in the forum Treatment 11 years, 8 months ago
Hi Maureen and Ian
That's good news as you say I bet it was the Cake that did it. well done and good luck stay strong.
Love to you Both
Tom Onwards and Upwards xx
eve replied to the topic Gill's Information Bureau in the forum Off topic 11 years, 8 months ago
Hi Dai and Jean
We are suppose to be getting all these new people to tell us about themselves plus post a picture!!!!!
Dai Slim has had CDT plus Velcade next should be Revidimide,!!!!!! We though we might get 2 years !!!,,the only way we new it had returned was I asked for BMB as it does not show in blood or urine!!!!!!!?. We do not know if…[Read more]
eve replied to the topic Ian's birthday and MRSA in the forum General 11 years, 8 months ago
Hi Maureen
Take everything they offer you it will help in the long run,I look back at the first time and thin how an earth did I do it,things also had to be changed at home,a shower instead of a bath,wooden floors in stead of carpet,the list went on and on,and some how I managed it.
This time I will not have all those problems but I am…[Read more]
eve replied to the topic At a low point in the forum Carers 11 years, 8 months ago
Hi Leedslass
Sorry but I do not know you name,I see this is the first time on this site,how you ave managed without it,I do not know.
You need some form of help,but only you can decide,as good as family and friends are,they have no idea,what or how they can help unless you tell them.
This illness brings depression with it,not just for the…[Read more]
tom replied to the topic We have dates in the forum Treatment 11 years, 8 months ago
Hi Jacquie
Well done in getting it sorted, I wont tell you not to worry as you still will, I will just tell you, Take one day at a time and let it run its course its a doable.
Now go and put some weight on first.
Tom Onwards and upwards
eve replied to the topic Happy 1st Birthday to my Stemcells. in the forum General 11 years, 8 months ago
Hi Babs
1 year it soon passes,enjoy your holidays ,after last year make this year count. I envy you going to Australia ,we always said we will go there and hire a motor home and do the figure of eight.
Best Wishers Eve
eve replied to the topic We have dates in the forum Treatment 11 years, 8 months ago
Hi Jacquie
Congratulations ,just go with the flow,as every one says it is doable,harvesting stem cells is a bit of a haul,let's hopeitjust takes a day,things just fall into place from then on,all hospitals are different how they deal with SCT.
The only advice I can give you is,do not go out and buy new night clothes,plus take in you own cup…[Read more]
eve replied to the topic Gill's Information Bureau in the forum Off topic 11 years, 8 months ago
Hi Everyone and Dai
My name is Eve I use to be Slims partner for 31years,no intention of marrying felt we did not need it,how wrong could we be.
We married in ITU on the 26 of April 2011.
In Febuary 2011 my husband was diagnosed with Myeloma.
Slim and I are both retired,and have had a wonderful life are last 15 years have been spent…[Read more]
tom replied to the topic New to this in the forum Newcomers 11 years, 8 months ago
Hi Jane
Well am pleased your Bloods was Ok 😀
And I hope its soon when you start your CTD, Hope your Daughter and Son in Law have a safe move and weather keeps dry.
Yes Elaine and i have the grandkids often we have six :-0 not often we get all six together its a scatter here and their but we do have days when we know we will have them…[Read more]
tom replied to the topic Ian's birthday and MRSA in the forum General 11 years, 8 months ago
Hi Maureen and Ian
Am not shocked nor surprised by the way you both feel, as its been said many a many a time its hard bloomin work and i think its harder to be the "Carer" than the patient.
I hope you all have a great Birthday,we all know its not going to be a great big lets get this party started day, so a little bit less is more (as the…[Read more]
tom replied to the topic Chicken Pox !!!!!!!!! in the forum General 11 years, 8 months ago
Hi Sarah and Henry
I can tell you I had them as a child, and got spots again when I was in my late 30s and told Dr my wife thinks its chicken pox ??? He said You should listen to your wife more as she is correct. But be grateful it's not shingles ? So the answer is yes.
Hope he stays well from it.
Love Tom onwards and upwards xxx
eve replied to the topic Bence jones 24 hour protein test. in the forum Newcomers 11 years, 8 months ago
Hi Ali
You would be better you rang the myeloma help line t speak to Ellen or another nurse.!!!,
Every one on here can tell you there story but it will not help you .Go back to y our GP and keep pushing until you find out why your white cells are low,the problem with Myeloma is a GP. Might only come across 1 case in a life time and people…[Read more]
eve replied to the topic Ian's birthday and MRSA in the forum General 11 years, 8 months ago
Hi Maureen
Well what can one say,it's one thing after another ,this is we're the family have to help out,even if it is just for an hour to give you a break.
In Ian,s defence he most properly does not realise how everything. Is taking its toll on you,but it does not mean you have to sit back and take it. You do have to find you own way of…[Read more]
tom replied to the topic leg muscle weakness in the forum Treatment 11 years, 8 months ago
Hi Ian
Thats Good and i hope that you dont have problems with your legs as am sure you have enough to contend with.
They say the Subcut is best way? am pleased you are confirming that.
I have fingers crossed for you Ian, keep well and hope your legs stay solid.
Tom Onwards and Upwards
tom replied to the topic New to this in the forum Newcomers 11 years, 8 months ago
Hi Jane
Your welcome.
Dont forget during SCT you wont be alloewd out till your fit (ish) so I would suggest patches before you go in to wean yourself off them 😀 that said you will be near a coma anyways as Elaine told me i slept most of the time Lol.
Easter? well no plans but am sure we will be babysitting some time over that week end 😀 ,…[Read more]
tom replied to the topic Disability Living Allowance in the forum General 11 years, 8 months ago
Hi Billy
Sorry you had to join us but welcome anyway.
Its hard to keep your savings when you get ill let alone when you get proper ill 😐
I and my Young Bride (elaine) has seen our savings not only dwinndle but go the lot :-S as Elaine got breast cancer in 2008 and i with MM 2009 🙁
BUT I am pleased to say I dont have Bone damage and…[Read more]