[AmelieParticipant]

Well done Keith, I am so glad to hear you didn't feel sick.

[AmelieParticipant]

Thank you so much Carol – your experiences help me a lot!
It is really good to hear that the level can go up without it necessarily has to be a relapse. Hopefully John's will go down again. We will see.
Love
Amelie

[AmelieParticipant]

Hi Gill,

I have written to the myeloma uk nurse before and got an answer so I will do that again. They are very helpful and write very clearly and easy understandable.

I am thinking much about his way of coping with the disease. He is not denying that he is ill and he shares all informations, but he gives it very little space in his thoughts. That is obviously a good thing because it leaves him more energy to focuse on the things which are important to him.
The disadvantage about that attitude is of course that he doesn't make many demands to the doctors. Maybe he also doesn't want people around him to think too much about it. I don't know.
I also don't know of what help I could be at the consultation – I gave him articles on Revlimid maintenance and he showed them to the doctor, but he just said it was not good – and now one year after sct it is too late to start maintenance. 🙁
If and when he is going to have one more sct I will push more for a trial with Revlimid maintenance. I think he knows I will do everything for him, but I guess you are right and when the right moment comes I should offer him to go with him if he feels like.

All the best,
Amelie

[AmelieParticipant]

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

[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.

[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

[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

[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

[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]

May I ask when was your sct?

No he didn't get any anti-histamines. They have been recommended on this page before and I have mentioned it for him, but apparently the doctors have other ideas 🙁

Since his sct was a year ago they claim it has nothing to do with the skin problems, but I have a strong feeling they are wrong. Therefore I am very interested in knowing how long time ago you got your sct.

Thanks a lot for your help.

[AmelieParticipant]

Hi Shirls, he got an auto so it can't be graft verses host – at least to my knowledge.
Thanks for your reply and get well soon!
Love
Amelie

[AmelieParticipant]

Thanks for your reply Scott – hope you will do better soon!

[AmelieParticipant]

No one? :-/ Can John really be that unique?

[AmelieParticipant]

Great to hear, Mari!

My friend is doing very well too. In August, almost exactly one year after he was discharged from the hospital, he will be conducting a great concert. I am so grateful that it is possible.

Bridget, you are not the only one who is lacking skills – I can't swim!!!

[AmelieParticipant]

Just read your other thread – this is great news!!!

[Author]

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