[lys2012]

Current plan: watch & wait, start treatment in summer

by lys2012 on Tue Mar 21, 2017 6:43 am

It's been a while since I posted anything. I know many people read the Beacon and like to hear how some of us who have been here a while are doing and what real life with multiple myeloma looks like.

I had my two month check in with my specialist. My bloodwork was from last week. According to my doctor (met the fellow first, then she consulted with my specialist and both came back into the room), my latest M-spike is 27 g/l (2.7 g/dL), and creatinine is 90. I forgot to ask hemoglobin, but I believe it is stable, just below normal range. Protein and IgG are going up slowly. I will have access to the online results, soon but I could not log in yet so I don't know all the exact numbers. My doctor describe my progression as a big change, then a plateau, then a big change, then a plateau, so it is not exactly a gradual upswing.

I was told last appointment that it would likely be summer when I would start treatment for the relapse. We have a wedding in July abroad that we really would like to go to, and I recently started a new job, so going back into treatment is not the best timing right now! The goal now is to hold off until the end of August, as long as no new symptoms or issues come up (if they do, then it would be treatment immediately)

The treatment plan is Kyprolis (carflizomib), low dose dexamethasone, and Revlimid. All are new treatments for me (well, not the dex, but I said I will not take high-dose dex again). Then after 4 or 5 months induction I'll undergo a second autologous stem cell transplant, followed by maintenance of some kind and hopefully another long remission.

[Nancy Shamanna]

Re: Current plan: watch & wait, start treatment in summer

by Nancy Shamanna on Tue Mar 21, 2017 8:57 am

Thanks for posting this update, Lys! I hope that the myeloma holds off for you for more time too.