eve replied to the topic Full Remission in the forum Treatment 11 years, 7 months ago
Hi Peter
Very good news,you must be feeling on top of the world
Was interesting what you said about not likening alcohols Slim is the same and he loved his wine. He even tried a G&T yet other people enjoy drinks wonder why taste buds do not come back with some people.
I will not take Toms name in vain ,!!! Lol Eve
eve replied to the topic Franks home whey hey in the forum Carers 11 years, 8 months ago
Hi Jean and also you Frank.
You so look forward to coming home,then it flops and becomes scary,no support .!!!! We all had it Jean,but your an old hand now,Frank will go in for blood checks,any problems, will be picked up only when they are completely happy with him,concerning bloods and platelets,it will become less visits for hospital. The…[Read more]
eve replied to the topic MM & AL Amyloidosis…..Stem Cell Transplant info in the forum Related conditions 11 years, 8 months ago
Hi
I cannot advice you,but I know someone who can,ring the Myeloma Nurses on here,there are also video s in the library part of genuine people who have treatments,when you have two disease s it complicates things.
I will say no one can guarantee what remission. Anyone can get,they can only hope for time,and if doctors valued patients…[Read more]
eve replied to the topic my mum has myeloma. first time post in the forum Newcomers 11 years, 8 months ago
Hi Maureen
I am not surprised by your story,as Slim and a few others have gone through a similar path,I actually sent a letter to my original doctor asking for an explanation ,thinking he might just have the guts to admit,the mistakes he made,but it was a waste of time.I phoned for a referral ,you need them private or not,another doctor phoned…[Read more]
tom replied to the topic Stand Down & Wait Around in the forum Treatment 11 years, 8 months ago
Long day for you two Dai and Janet 🙁 but it looks like it was worth the wait 😀 albeit am sure it can be done faster, it cant be good sat up in hospital waiting.
Keep well Dai and hope you stay on treatment till it sorts it all out.
Tom Onwards and Upwards
eve replied to the topic Stand Down & Wait Around in the forum Treatment 11 years, 8 months ago
Hi everyone
Andy I think Velcade is around £ 750 per phial,but the makers of Velcade have some form of agreement that if it does not reduce the Myeloma. by 50 percent the health service do not pay for it plus it is a trial drug unobtainable,as not passed by NICE,,that's the way I read it any way,don,t quote me David. Lol
To give my local…[Read more]
tom replied to the topic Myeloma Mumma in the forum Newcomers 11 years, 8 months ago
Hi Suzanne
Sorry you had to join us 🙁 but a warm welcome you will find in here great bunch of folks 😎
You will find a few blogs on here with people going through or have gone through the SCT, I did not do a Blog wish I had as you soon forget (well I did) the SCT is an uphill struggle at times but its a "Doable" I done mine in December…[Read more]
eve replied to the topic Stand Down & Wait Around in the forum Treatment 11 years, 8 months ago
Hi David
I see you are quoting me, At the time I ask Slims consultant about possible maintenance ,with Velcade I explained Slim had had CDT then Velcade then SCT and wanted to know if there was the possibility maintenance. As at the moment it is 10 percent in bones. I was just putting a possibility forward rather than possibil round of…[Read more]
eve replied to the topic Two and a half years in the forum General 11 years, 8 months ago
Thank you Andy and Sue
Andy at least we got SCT stage,will be your turn,a doña we hope..xxxxxx
Sue how are you doing,now the rush is over,I hope you are managing to sleep,give yourself time to recover.
I am off today for afternoon tea,( Mother's Day present from one of my daughters ) I have invited Jenny who has become a friend,her…[Read more]
eve replied to the topic Two and a half years in the forum General 11 years, 8 months ago
Hi Helen
Just thinking about you,it's worst second time round.
First time you are just grateful you at last know what is wrong,second time round used up CDT. Plus Velcade ,the options reduced,It is a shock,we thought Slim might get a couple of years,but 10percent in 6 months,that's not a bit in the bum,it's a shark attack.
As I said…[Read more]
eve replied to the topic Two and a half years in the forum General 11 years, 8 months ago
Thanks again everyone
It is nice to have your best wishers.
Tom sold the van today,exchanged it for a smaller one,which will be easier for me,cost me money,but it will be easier to take out for weekends plus the odd weeks ,the other one was made for staying away for long periods, the last thing I want is for Slim to be stuck in doors ,he…[Read more]
tom replied to the topic Franks SCT take 2 in the forum Treatment 11 years, 8 months ago
Hi Jean and Frank
Aww bless you two, you are having it hard but it will come right its took a bit longer than mine and I was drained so I can only guess how tired frank must be (and you jean) .
I have nearly everything crossed that Fran soon turns the corner and is allowed home.
Love to you Both
Tom Onwards and Upwards xxx
tom replied to the topic Two and a half years in the forum General 11 years, 8 months ago
Hey you two
Hey am real sorry its came back on you Slim I do feel for you both.
As for feeling Sorry for yourself? well you have every right Eve to feel like that, but am sure you will soon turn round and face it head on and you know you have a few big shoulders on here that is more than willing to help you give that MM a shove.
If you are…[Read more]
eve replied to the topic Two and a half years in the forum General 11 years, 8 months ago
Hi Baba and Jean
We have known for a month now,it is just getting you head round it and getting over the disappointment ,we have both picked are selfs up again,plans changed and ready for the next round,stopped feeling sorry for myself,given myself a kick.(and that's just me) .Slim deals with it differently than me.
Selling large…[Read more]
eve started the topic Two and a half years. in the forum General 11 years, 8 months ago
Hi Everyone
I have tried putting off this news,and just slipping it in on someone else,s story,but we have finally come to terms with the fact,the Myeloma is back.
When we asked for a BMB it was for our peace of mind,as Slims Myeloma does not show in bloods or urine,as the consultant said it is very unusual,anyway he went for the 100 days…[Read more]
eve replied to the topic Franks SCT take 2 in the forum Treatment 11 years, 8 months ago
Hi Jean
Good to know Frank got home,it does take a lot out of them Jean,when Slim came out the idea of going home gave him energy,I wanted him to have a wheel chair to the car,he refused,we made it from Kings in London to Kemsing Sevenoaks,had to stop as he could not go on,had a rest,then rushed like mad to get him down to Deal took 3 hours…[Read more]
eve replied to the topic my mum has myeloma. first time post in the forum Newcomers 11 years, 8 months ago
Hi Maureen
I never realised you had difficulty getting diagnosed,what did you doctor say about it???
How are things going,are you managing to get any rest.Love Eve
eve replied to the topic Happy 1st Birthday to my Stemcells. in the forum General 11 years, 8 months ago
Hi Baba
Well 1year on,and lots of years in front of you,congratulations .
I know you go to Canterbury ,so is it just Zometa now and a visit to see consultant every 3 months??
Let me know your next appointment,it may just fit in with one of Slims,I think we will be on the old route again.
Have a nice Easter.Eve
tom replied to the topic Happy 1st Birthday to my Stemcells. in the forum General 11 years, 8 months ago
Hi Babs
You have every right to feel good as am sure your post will be an encouragement to those just embarking on the SCT and or other treatment for MM.
As for the Picture that painted at the start of all this well it is/was scary to be honest but the more I read about Good news the better I feel, and as you know i am an Onwards and upwards…[Read more]
eve replied to the topic Franks SCT take 2 in the forum Treatment 11 years, 8 months ago
Hi Jean
Sorry to hear Frank,s still in hospital,did not realise as I do not look in on here a lot at the moment, I thought Frank would have been out by now,kidney,s leaking,that's a new one on me,is he in any pain!!! I use to shower Slim when he was all hooked up,some times I ended up wetter than him,he had a shower but a wet room would have…[Read more]