[AmelieParticipant]

John was at the hospital today to have a counsultation with the doctor. He was told that his m component had gone up a little bit. The doctor didn't
mention the exact number and he said that otherwise everything looks fine.

Is there reason to worry? Will it continue to rise? Or can we expect it to be stable for a while? Should there be given any treatment to keep it on the level it is now?

Oh my God, I had not expected this. It is exactly one year ago John had his sct and he is doing so well working almost full time.

[JetParticipant]

Please Amelie – don't ask these sorts of medical questions here – please speak to the consultant or a haematology nurse. I don't know where you are, but in Nottingham, we are given a phone no. bleep and pager to contact a specialist nurse or the Day Case nurses at any time. Use them – that's what they're there for.

On re-reading your post, I expect that the consultant wasn't too worried, or he would have suggested treatment, but if it's left you worried, please get your questions answered by the people who can give you reliable answers.

Best wishes
Jet

[DaiCroParticipant]

Hi Amelie,

It has been good not hearing from you. 😀

The consultant has raised the point of the m components but if he did it in context i.e. the figures are x but everything else is fine then perhaps all s/he is doing is noting that here is a presence but nothing out of the ordinary. The next meeting will tell all – whether the m component stays the same or rises within acceptable parameters etc… as long as everything else stays the same. John was there… did the consultant question him on anything? Are you sure there was no figure given?

My SCT failed after 10 months but they monitored the rise over 3 consults before declaring remission over… and figures were mentioned and monitored and ceilings were set. From what you say it seems as if John is a long way from being treated as suspect yet.

Dai.

[AmelieParticipant]

Hi Jet,

Thanks for your reply. The information level here is poor and John is not good in demanding answers.

I know every case is unique, but I still benefit from hearing about the experiences of others.

Take care,
Amelie

[AmelieParticipant]

Hi Dai,

I have been reading a bit here and there but not as often as before since I felt I needed a little break.

I hope we will get more details soon. How frequently did you have the consults? Until the beginning of the summer John went there every month, but now it is only every 3 months. I wonder if the rise will change that.

I just want the beast to stay asleep and I can't stop thinking if it would have been different if he had gotten the Revlimid maintenance.

Thanks a lot for your help.
Amelie

[eveParticipant]

Hi Amelia
Your posting was near midnight,and I can sympathise how shocked and worried you must have felt,it is very hard when things start to go wrong,and by nature you must worry about it all starting over again.make sure you keep posting ,i often wish Slim was one of the lucky ones who sail through to SCT.

I cannot answer your questions,but can give you support,and kind words,and thats all people need sometimes,best wishers Eve

[AmelieParticipant]

Thanks so much Eve for your kind words.
It certainly means a lot to have this place to ask questions and to share the experiences with this dreadful disease.
I am sorry Slim couldn't have the SCT.
All the best,
Amelie

[PerkymiteParticipant]

Hi Amelia, You post all the questions you want girl, that is what we are, or at least I am, here for. Sometimes it is just good to ask although you know the people might not have any idea of the answer, I find it gets it off my plate so to speak and I can relax a little. And, who knows we may, just may, be able to help or reassure you.

If you are really worried and you do not have access to the Doc/Con why not try our resident Myeloma UK Nurse, the telephone number is on this web site and it is free. I have not spoken to her personally but I understand she is very good.

It is 4:16 a.m. and I have not been able to sleep yet, nothing to do with MM just got a lot on my plate at the moment. I am off to Croyde tomorrow, opps I mean today, to meet my London family. I am not going to be the life and soul of the party at this rate. They will all nod knowingly in the corner and mutter it is something to do with MM, and they will all be wrong but there you go. I must try to get some sleep now.

Bye for now

Kindest regards ? Vasbyte

David

[AmelieParticipant]

Hi David,
You are right – it helps just to share the thoughts with others in the same boat.
Good idea to contact the nurse – I will do that.
Hope you got some sleep and had a great trip!
All the best,
Amelie

[DaiCroParticipant]

If I recall correctly Amelie you are a friend and work colleague of Johns.

Does he live alone or does he have support network at home.

I was wondering because if he is single then there is a chance that he will be attending these consult meetings on his own… if this is the case could you not offer to attend… as a friend, to take notes and offer general support?

Dai.

[AmelieParticipant]

Dai, that is correct. He is much older than me and a kind of second father. He has a family but for some reason I don't know they don't take part in his consultations and they don't know much about the disease. I have had the thought if I should offer to join him, but it could be a bit awkward. On the other hand he shares all the information he gets with me and he did that since he was diagnosed. It is difficult.

Today we got a bit more of information.

The M component had rised from 1.3 to 2.6. The doctor describes the disease as "slumbering" and he says they won't do anything until it has passed 6.0, which he says might take a couple of years. How he can say so I don't know. It was 1.3 this spring and now it has doubled 🙁 But of course I hope he is right. Does it sound reasonable?

It surprises me because John is doing so extremely well – much better than all the other patients he meets when he gets the Aredia drop each month and much better than most patients I have read about. He works full time or almost full time and he is cutting trees in the garden.

[GillParticipant]

Hi Amelie

I do wish I had some answers for you I know that you are not resident in the UK. My memory is not good but I think you are in Holland??

I am sure that you would get help from the mm information line which is a freephone number from the UK but I have no idea if you can access it from other countries.

As for attending consultations with John, I think you should bite the bullet (silly Brit saying) and offer. You are obviously great friends and I am sure that he will say yes or no without fear of offending you.

Please get in touch with all of us soon and let us know how John is getting on

Very best wishes from Gill xx

[JetParticipant]

Hi again Amelie

I just re-read my earlier post to you and realised that I came across quite harsh. So I just wanted to apologise if my comments upset you. I just wanted to be sure you would get sound, reliable medical answers. But I do realise that sometimes we just need to rant and be heard and acknowledged.

I hope you're getting the answers you and John need, from whichever source.

Best wishes
Jet x

[CarolBradley1Participant]

Hi
Sorry for the delay but only just read your post. If it helps my level has gone both up and down in the past (by quite a lot) and I often thought it was when I was very tired or under more pressure at work.
Hope your getting some answers – it´s difficult to ask when they always seem so laid back but remember they know all about it and we don´t also it´s us or our loved one and not them or theirs! I´m sure once you explain how worried you are they will understand and explain it to you.
Nowadays if I don´t understand something I just ask them to explain it to me as if I were a three year old – that seems to make them smile and give me an explanation that a layman can grasp.

Sorry you have had the upset but glad to hear he is doing so well otherwise. Please let us know how you get on when you get the time.

Love Carol xxxxx

[AmelieParticipant]

Thank you Jet, no problem – I got your point!

[Author]

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