[KMZ]

Re: Is my mother's multiple myeloma active again?

by KMZ on Sun Dec 13, 2015 10:36 am

Bahrain - Middle East

[Little Monkey]

Re: Is my mother's multiple myeloma active again?

by Little Monkey on Sun Dec 13, 2015 4:33 pm

Would your mom be able to make the 2900 km flight (about 3 hours) to Ankara, Turkey, for consultation?

I remember reading quite a few myeloma studies out of Ankara University hospital; in particular, studies by a Dr. Mercer Beksac; I believe Dr. Beksac did some work with Dr. Berenson in California.

[KMZ]

Re: Is my mother's multiple myeloma active again?

by KMZ on Mon Dec 14, 2015 6:08 am

Dear Little Monkey,

I don't know how to express my thanks to you. I have contacted the Turkish professor you referred me to by email, and guess what; she replied to me in few hours back.

Thank God things seem much more better than what we thought of. I will share with you her response shortly.

Thanks a million for your great help.

Regards,

[Little Monkey]

Re: Is my mother's multiple myeloma active again?

by Little Monkey on Mon Dec 14, 2015 8:37 am

You are welcome; hopefully there will be a direct flight from Bahrain to Ankara (if not, Instanbul)

[KMZ]

Re: Is my mother's multiple myeloma active again?

by KMZ on Tue Dec 15, 2015 1:27 am

Dear Little Monkey,

Thanks once again for your great help. Well, we still don't consider dragging her anywhere outside the country; unless there is an extreme need! It's too difficult for her!

Below is the reply of the professor:

Dear,

Thank you for sharing your mother’s medical history with me.

I have read all the lab reports and have some good news regarding her current situation:

She has achieved a most probably VGPR (I do not have her initial M protein level) and her main problem is the Velcade related polyneuropathy.

My evaluation of the S-PEP is there is a smaller M component than reported.

She may benefit from gabapentin or pregabalin use. I do not recommend her to receive any anti-myeloma treatment immediately.

If her monthly follow-up does not show progression in the monoclonal band in the gamma region she may continue not to receive treatment.

However if she progresses she may receive lenalidomide(10-25 mg7d for 21 days) + dexamethasone (weekly). I do not recommend this treatment immediately as she has a hypo­cellular marrow and the deterioration risk of neuropathy is also present.

Anti-viral and anti-pneumococcal vaccination is also recommended.

Wishing you and your mother all the best,

Regards,

Please let me know what do you think?

Thanks.

[Little Monkey]

Re: Is my mother's multiple myeloma active again?

by Little Monkey on Tue Dec 15, 2015 8:37 am

Hi KMZ,

I don't think it's bad news;

there is a whole scale of various types of remission for myeloma; maybe a more senior member of the forum can comment, as I don't know the exact differences between them.