[Eric Hofacket]

Re: Rising kappa FLCs & varying IgG levels - meaning?

by Eric Hofacket on Tue Mar 31, 2015 3:06 pm

Nancy,

I stopped the dex­a­meth­a­sone because I was starting to show signs of having blood pressure problems, and I was getting some mental and mood changes where I was apathetic about everything. Not sure if the blood pressure was entirely dexamethasone, but my concern was three years ago I was hospitalized for a week with orthostatic blood pressure, and I was starting to feel the same and seeing the same signs in the readings I did three years ago before I ended up in the hospital.

One challenge I will have is whatever treatment I go on next will almost certainly require dexa­methasone, so I hope I can hold out on it. As you said, dexamethasone is almost always added to myeloma treatments to improve outcomes. I have seen a Beacon Advisor say that, as a single agent, dexamethasone often gives better results that Revlimid does as a single agent. The two together are even better yet. So dexamethasone is a significant factor in myeloma treatment. I feel that it is almost certain that, whatever I do going forward without dexa­meth­a­sone, it will not be nearly as effective as with.

There is a time period needed to be off the prior treatment before starting a trial. I have already been off Revlimid three weeks, so I meet this criteria for this trial today. But, as you said, during that time myeloma can creep up, and that is what has happened with me during these three weeks, so something needs to be done soon.

The irony is that, in the last three weeks being off the drugs, I have been feeling better than I have in a while. I have been biking more and increased my swimming to 12,000 yards a week. You would not know that my myeloma has been getting worse from the way I feel. This is an example of how you cannot evaluate the state of myeloma, or if a treatment is working or not, just by how you feel.

I did not know about the difference in effectiveness between IV and sub-q Velcade. I suspect it may not be that large. And Velcade cannot be effective at all if you cannot stay on it because of neuropathy, so I also suspect that sub-q is probably still advantageous overall. Maybe there will be Velcade in my future again sub-q.

One of my goals with Kyprolis is to try and stretch it out for as long as possible before I need to stop and switch to something else and there is something else to go to – a goal I believe nearly all of us have in our treatments.

[Nancy Shamanna]

Re: Rising kappa FLCs & varying IgG levels - meaning?

by Nancy Shamanna on Tue Mar 31, 2015 8:41 pm

Good for you, Eric. You have such a sensible attitude towards all of these changes in treatments that you are contemplating. It doesn't seem to matter what drug it is, there are always some side effects. Hope my observations helped, but probably you have studied this subject a lot too.

Wishing you all the best with new treatments.

[Christina]

Re: Rising kappa FLCs & varying IgG levels - meaning?

by Christina on Thu Apr 02, 2015 10:20 am

Hi Eric,

We seem to be in similar circumstances with kappa free light chains, but I haven't switched from Revlimid yet.

I'm wondering if you and your doctor considered adding the dex, maybe a low dose, back in the mix for a cycle or two?

Also, what about pomalidomide [Pomalyst]? Are you holding that back?

I see my doctor next week and I'll be asking what he thinks my next treatment will be. Right now, Revlimid still seems to be doing something, but if my m protein keeps going up, we'll need to have a plan.

Best to you in your decision. Such tough choices for us.

[TerryH]

Re: Rising kappa FLCs & varying IgG levels - meaning?

by TerryH on Thu Apr 02, 2015 10:44 am

Hi Christina,

If I recall correctly, Eric is having problems with Revlimid suppressing his white blood cell counts. That's one of the main reasons he went off of it. So, in that situation, Pomalyst is probably not a good choice, since it tends to suppress white blood cell counts as well.

[Stan W.]

Re: Rising kappa FLCs & varying IgG levels - meaning?

by Stan W. on Tue Apr 07, 2015 2:27 pm

Eric Hofacket wrote:

I stopped the dex­a­meth­a­sone because I was starting to show signs of having blood pressure problems, and I was getting some mental and mood changes where I was apathetic about everything. Not sure if the blood pressure was entirely dexamethasone, but my concern was three years ago I was hospitalized for a week with orthostatic blood pressure, and I was starting to feel the same and seeing the same signs in the readings I did three years ago before I ended up in the hospital.

Eric,

Have you asks your doctor to substitute prednisone instead of dex? I never took dex. Refused it as I needed to continue having as normal a life as possible. The does is higher, as prednisone is not as potent. But I didn't have any of the side effects one gets from dex.

[Eric Hofacket]

Re: Rising kappa FLCs & varying IgG levels - meaning?

by Eric Hofacket on Mon Apr 13, 2015 12:35 am

Stan,

I had thought about it and discussed it with my oncologist but have not tried making the switch to prednisone. I have a coworker who has been on fairly high doses of prednisone and he described having a lot of the same issues as I have had with dexamethsone. Makes me wonder if taking the same equivalent dose of prednisone would make much difference,