[AmelieParticipant]

Great news, congrats!

[AmelieParticipant]

Thanks again to all of you for your very informative answers.

Somewhere else I read about someone who had bone damages with a paraprotein level of 3 and here I am reading about patients living well with very high levels. So it must mean that paraprotein alone says very little about the condition.

John had severe bone damage with a paraprotein level of 37 – does it mean that he will also have bone damage when it reaches that level again? Or could he be lucky to live well with a high level.

Sorry for keeping asking all these questions! 😀

[AmelieParticipant]

Happy birthday to all of them! Each of them deserves a cake!

[AmelieParticipant]

Hi Jean!

So it means that Frank has been living with a paraprotein between 21 and 30 for 5 years without a sct?
This disease keeps surprising me… When John was diagnosed his paraprotein was 37 and 2 vertebraes were gone. How comes that 37 was very serious for John while Frank can live with 30 without treatment?
Thanks for writing – it is very informative.
Love
Amelie

[AmelieParticipant]

Dear Bridget, thanks for your reply. I absolutely agree with you, that we should not be over fussy. As you might remember John is my old friend and not my husband. We see each other a couple of times a week and we don't always speak about myeloma. He knows that I am worried but one of the reasons I use this forum is that I don't want to talk too much to him about it.

I also like to ask questions here, because he doesn't get as much information as he should from the doctor and John is definitely not very good in squeezing it out of him.

John is working full time and he cuts the trees in the garden together with his 93 years old mom, so he manages everything practical himself except from carrying heavy stuff.
Love
Amelie

[AmelieParticipant]

Just wanted to send my best wishes and thoughts.
I hope you will be able to make the journey.
Love
Amelie

[AmelieParticipant]

Thank you very much both of you for your replies.

Apparently John had to squeeze the information out of the doctor who finally said, that John's case looks to be a normal case where the myeloma is back within 3 years from sct.

I know this isn't exactly bad compared to patients who are fighting with failed treatments, but I can't stop being disappointed. John's quality of life is so good – almost normal and he is working full time, so we had hoped he would be one of those who can wait ten years or more for the second sct. I know this sounds totally spoiled but it is how I feel.

On the other hand, David is right – it is not only about the paraprotein but also all the other numbers and they appear to be excellent, so maybe there is still a hope.

Jean, although Frank's paraprotein was 30 they didn't talk about a relapse?

Thanks again.
Love Amelie

[AmelieParticipant]

Last week John had his monthly blood test and meeting with the doctor. The M level is still rising – now it is more than 5, but the doctor still doesn't seem worried.

I am extremely worried. Has anyone else experienced a rising M level, which according to the doctore isn't serious?

[AmelieParticipant]

Hi Dai,
Great to read about your experience. May I ask if a second sct has been considered for you?
I know they collected stemcells enough for 3 sct's for John and he had one, but it was hard to him and I am fearing the day they say it is time for the second one.
Best wishes,
Amelie

[AmelieParticipant]

Ok – thanks a lot!

[AmelieParticipant]

Wher to find Shapie's last post? Tried to seach but I can't find it.
Love
Amelie

[AmelieParticipant]

Very well done David!!!

[AmelieParticipant]

John's situation is exactly the same. His SCT was in August last year, he is doing extremely well but since the spring his PP has risen. Now it is a little more than 5.

I am in panic too, but his doctor seems quite relaxed. John's blood count has risen too and the doctor says that is a good thing. As far as I have understood it makes the pp level less important.

Has anyone else experience with this?

[AmelieParticipant]

You are right – I always forget about that opportunity – I will mail to Ellen.
Thanks everyone!

[AmelieParticipant]

That is the kind of headline we like to see! Congrats!
Hope she will feel better soon.
Love
Amelie

[Author]

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