Hi David
Sorry to hear about your relapse 🙁 just remind me how long was it since you had SCT (me brain has gone??)

Good Luck with the Journey with the "Velcade" and I hope its gentle with you.

Vasbite, Onwards and Upwards Tom

Hi Richard

Things like that happen here in Norther Ireland. Frank went in on A Thursday and the chemo was to start then and stem transplant on Friday. We were told lies (contradictory explanations) but said chemo would be late and that would mean the transplant would be late on Friday and they couldn't do it as there would be no consultant or…[Read more]

Hi Richard,

How frustrating but at least things should be straight forward when you start on Monday. And as they don't work weekends in Germany you will never have to sit there waiting for treatment on a Saturday 🙂

I hope it goes smoothly on Monday.

Megan

Hi Jacquie and Geoff,

Glad to hear that Geoff was able to harvest enough for a transplant.

I hope you have a great holiday Jacquie and come back rested and ready for the next step.

Keep us posted on the transplant when it starts.

Megan

Thank you all for your responses

Unfortunately frank has little energy so for the moment I won't suggest he makes me some cheese on toast but I will when his energy improves 🙂 .He is still eating very little but he is eating!!

David I have Dettol all over the house and hand sanitizer sits by the front door. No one gets into the room till…[Read more]

Hi Peter

I was ging to say that about Tom bu ran out of nerves,he keeps an eye on my post in case I take the mick.lol
Sorry about spelling this I pad has a mind of its own, Eve

Ho Jean

I am so happy for you,they are good bloods,and I am so happy you have a first class consultant who knows there is no way a man who has had a SCT should be waiting three hours in clinic

Tell Frank if you cheese on toast is not good enough,he can make it all the time and give you a rest. love Eve

Only 3.5in one go!!! That's great.

I know you tend to want to get this over and done with,but you are wise to have that holiday . Good luck Eve

Hi Mohammad

Sorry your Mum has got MM but a warm welcome to you both.

As for PN it is a side effect am afraid I suggest she talks to her Consultant they might reduce the drug dose that she is on and the sooner the better I think.

Tom Onwards and Upwards

Hi Billy
Well done on getting that news 😀 I know how good that feels (still remember it lol)
Good Luck with your Transplant its a bit uphill sometimes but well worth it 😎

Eve I never said my buds are back I just like the "Feeling" Lol, and trust me you can take my name anywhere it will stand you in good stead :Lol hope your both doing…[Read more]

Hi Rebecca.

I'm 38 and was diagnosed at 35 but haven't heard that one before. I think that it is individual and is probably more to do with your genes than your age as to what impact it has on your body. But I don't know for definite. Have you tried asking the Myeloma Infoline?

I'm not sure if you're asking for you or someone else, or…[Read more]

Hi all

Frank went to hospital to the clinic. After 3 hour wait we saw consultant who was furious. I have never seem her so angry. She said she left instructions that Frank was not to come to clinic until Monday. She said had she have known that he was coming she would have ensured he would have been sent to day unit, bloods taken and she…[Read more]

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

Dear Mega, Dai and Eve

Thanks for your replies. I have Re read other post and what is going on in my tummy seems to be the norm:-S. Dai Frank managed to get up the stairs – mind you it took him some time – and I pretended to be busy in another room. He wanted to do it on his own and didn't want me to see him struggle. He said last night he…[Read more]

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]

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]

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]

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

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]

Hello Jean,

You are not being selfish at all. As much as I wanted Phil home it is a big responsibility to take on when suddenly it is just the two of you without all the back up of the nurses and doctors on the ward. Just take it one day at a time and don't worry too much (easier said than done!). Phil came home on a Wednesday so I took the…[Read more]