Thank you Ellen.

From what I understand the reservations have been based on overall efficacy, that seems to have been answered, so I do hope that a method with equal efficacy and superior management of side-effects will soon be the order of the day. (I am about to start Cycle 2 and my consultant did say that I might get subQ administration…[Read more]

Ah Min,

I have nothing to offer except love and support. If the doctor is questioning the results then there is always the hope that what Peter needs is something to stop the rise, be that Bendamustine or whatever.

My consultant has said that when the stepped programme of licensed drugs has run its course they will try previous courses that…[Read more]

Hi Alastair,

I cannot speak for other hospitals and centres as I have limited experience… but what an experience, in my case Nottingham.

The City Hospital complex has a purpose built Haematology Unit with an excellent Day Case Centre and two floors of specialist wards above the shop. It is part of a teaching hospital with direct links to…[Read more]

Hello alastair
I am under DR kwee Yong at UCH lONDON she is a recognised expert in the field of Myeloma you could try there if you are able to travel they have a very good team in the care of Myeloma

Regards Jo

Hi Roberta

I could echo all the things said here,But I think it all depends on the type of person you are.I feel the need to put everything right,it is sometimes impossible.

When there is a tragedy in your life,this is when you find who your friends are,and who needs fair weather friends. As to relatives its a different game,may be they do…[Read more]

Hi Dai

Well a whispered "Onwards and Upwards" and do you know I pressed the key pad real slow and quiet lol when I typed that he he.

Am Pleased you are feeling better albeit with a lack of sleep 🙁
Good Luck with it all.

Regards

Tom "Onwards and Upwards" 😎

Hi Bridget, what a lovely morning (the night was good too, seeing as I have been awake for most of it) 😛 .

I think you may well be right about the 'week off' but that is really, really okay… because, as you quite rightly say, if I am expecting it then it will be tolerable, with coping mechanisms cut to suit. 🙂

I expect I'll get into…[Read more]

Hi Dai I am glad to hear you are feeling a little better , it is horrible when something like that makes you feel as if you are going backwards though ! When I was on Velcade I expected to feel great and have lods of energy on my week off! Wrong the weeek that was drug free was a complete wash-out, which got to be tolerable because I was expecting…[Read more]

Tom, Jo and Debs,

Thank you for your support. It has been a strange day but I have reached the end of it without any further PN attacks, although my torso, ribs and sternum feel that Popeye has been going rumpeytumpetyrump ten to the dozen. :-S

I am following advice and increasing the Gabapentin and will monitor. I can only assume that…[Read more]

Hi Angelina and John

Hey dont we soon get better 😀 I recall after my SCT I asked when I might be going home on my 13th day and was told it will be about 7/10 days all being well 🙁 but 3 days later I was packing my case and heading home 😎

Took me some time to get into my eating habit dint ever think it would come back but hey ho its…[Read more]

Hello Dia

sorry I caanot give you any comment about Velcade but I put a lot of thought and prayers for you all if I could send it down the wire I would 🙂 like Tom I dont have all the words but lots love and hugs 😎

Love Jo xx

Thank you Angelina.

In which case I have a nice surprise for you. 😎

I have a lot of creative irons in the fire at the moment… from getting my first novel into the hands of an agent, getting my second novel started – big gesture, I am going to write the first paragraph on Thursday. 😀

I also have a songwriting project on the go – a…[Read more]

Hi Dai

So sorry to hear about your "Bad Stint" Hope it gets better soon 😀

Not one for the written word Dai, but strength has always been my thing (in me head lol) so I am sending some of mine 😎 So if its "Only" (love the way you say it) a matter of pain well you and I plus others can beat it. all the best with it

Regards

Tom…[Read more]

Hi Min and Angelina,

Thanks for your concern and support… I'll be fine. I rang my support nurse and she has told me to increase my Gabapentin to double dose in the evenings and perhaps even a Amitryptiline for dessert if I feel like it.

I was feeling so good and then, out of left field, I was back in a place which I was not awfully fond…[Read more]

Hi Ruth,

Being so early in the clinical response this is definitely a case for the medics to answer. A good starting point would be a call to Ellen and the team here at Myeloma UK and be guided from there.

The strength of this sufferer/carer community that has built up around this discussion group lies in the sharing of experiences, medical…[Read more]

Hi Liz

Am pleased it all got sorted, as I said I never have to suffer pain at all (hope he is correct ha ha)

Good Luck and hope the upt painkillers help 😀

Tom "Onwards and Upwards" xx

Hi Nicki

I just want to say it is lovely that you posted how well things are going for your husband,it gives everyone a boost.

I look sometimes at so many young people with this horrible myeloma and think how sad,lives not lived,so you post must be such a big boost.
I wish you both a long and happy life. eve