[AmelieParticipant]

Hi Carol,

I understand you are fed up with it – so is John!

He recently had a very strong reaction towards Aredia or Zometa (he doesn't what they actually gave him 🙁 ), but the doctor says the skin problems he had before that and still has, have nothing to do with that. He also still claims it has nothing to do at all with the mm and the treatment.

It is hard for me to believe – especially since they haven't come up with a diagnosis. OMG it is just a mess 🙁

Hope your doctors are more reasonable.
Love
Amelie

[AmelieParticipant]

Congratulations on having finished the sct – I wish you a long and happy remission!

[AmelieParticipant]

Today John told me it appeared that they never gave him Aredia. They just keep calling it Aredia because they are used to that name. He doesn't even know what they give him. It is hopeless…. 🙁

[AmelieParticipant]

Biophosphornates in general seem to be hard to the kidneys because we were told the same with Aredia and that is why it is given as infusion and not injection. So far – touch wood – John had no troubles with his kidneys, but I will check out if Zometa is worse than Aredia in this aspect. Thanks for mentioning it!

[AmelieParticipant]

Thanks again Mari, well if they also swap John to Zometa it could turn out to be an advantage. I will have to think about it that way!

[AmelieParticipant]

Great to hear everyone's experiences.
I think you are right David – it is wise to listen to the body, but I am not always sure if John does. 🙁

[AmelieParticipant]

Thank you Mari – it helps a lot!
I will tell John to ask for Zometa. Was Stephen allergic to Pamidronate or why did he swap?
Thanks again,
Amelie

[AmelieParticipant]

Thank you very much Chelle!
They definitely have to find an alternative to Aredia – they also said so, I just wanted to be prepared.
I can't find out how similar are Zometa and Aredia. They are both biophosphornates but is it possible to be allergic to one of them and not the other? Does anyone know?
Love
Amelie

[AmelieParticipant]

Thanks for the replies everyone!
John isn't my husband, but a dear friend. He is much older than me and I consider him as a kind of second father. We work together (that is where we met) and that is why I see how he manages working.

There is no doubt that work is very important to him. He is a boss so it is difficult for him to limit the work, although his boss has said they would allow him to work part time if it suits him better. They will do everything to keep him.

To find the balance is difficult and I would like to know, if it has any concrete impact on the disease. Luckily his work isn't physically hard so it doesn't harm the bones, but I don't know what stress could cause? Has there been any studies of that?

[AmelieParticipant]

Dear Bridget,

I wish you good luck with the radio therapy and I hope it will help you. It helped John a lot and it wasn't painful.

Take care and keep us posted!
(And don't forget to practise on the triangle!!!)

Love
Amelie

[AmelieParticipant]

I am already working on the next concert!
Tom, you can join Bridget on the triangle! One to hold it and one to bang it!

[AmelieParticipant]

Thanks everyone for the kind words!
It wasn't only a gift for John, but it also helps me a lot in my powerlessness. I know it sounds silly, but part of me never accepted that I can't rescue him from the mm – this doesn't rescue him either but it makes sense and that is a nice feeling when everything seems meaningless.

Bridget, it was a string orchestra (violins, violas, celli and doublebasses). We were 27 musicians. I will remember you when we need someone to play the triangle!!!

Love
Amelie

[AmelieParticipant]

Hi Bridget, I am so sorry about tumour, but great that you listened to your body and insisted! Well done!
Love
Amelie

[AmelieParticipant]

Dear Min,
I am so terribly sorry and my heart and thoughts go to you.
Love
Amelie

[AmelieParticipant]

Just want to send you all my best wishes, I can immagine how you must feel.
Love
amelie

[Author]

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