Looking for any input: Cytoxan Decision

[HereIam]

Novatrone is one of the treatments prescribed at the Center, but very sparingly and for those in a very steep decline. It would never be an option for me, as I have a heart arrhythmia.

And, since I last posted, everything has changed! I can't keep up with it. In my pre-cytoxan baseline exams with every specialty in the universe, it was revealed that one of the things causing my difficult speaking is a diminished lung capacity, which is being attributed 75% to MS and 25% to a curvature in my upper spine. Cytoxan can be toxic to lungs, and the neuros are thinking now it's not such a good idea.

So, we are going to do what we can do, which is 6 months of Tysabri, even though I am JC Positive. The risk of PML in JC positive is 1/1000 in the first year. I will take that risk, as my downhill slide seems to be getting a bit steeper, I am totally miserable, and will be very closely monitored.



Instead, we

[lori]

I'm so sorry to hear about your lung problems on top of ms. You must be one strong lady to get that kind of news, come here and share, then just get on with it. I know that it can send 'normal" people into a tailspin, but it seems that many people who visit this site are abnormally tough, supportive, empathetic...wonderful.

I wish you the best,
lori

[HereIam]

Thank you, Lori, your your kind words.

People here are truly wonderful. I think that this thread is a shining example of that.

And, we are a tough lot. We have no choice, that's how I look at it any way.

[Redwings]

I'm sorry to hear about your setback. You haven't mentioned Campath as a treatment option for you. The study data show good efficacy even in SPMS. If you're willing to accept the risks of Cytoxan, you may be a candidate for Campath. Has it been ruled out for you or just not considered yet?

[HereIam]

Hi Redwings and thank you for sticking with me here!

Not a candidate for Campath due to JC Virus and a whole bunch of other stuff.

I'm thinking (see my post on PPMS/SPMS board) that I'm in a phase of the disease where there's a big fat nothing for me.

I shall live on, there's a whole lotta that to do (in a modified version).

[HereIam]

Hey Redwings, while i have you (and other's) attention, would you go on tysabri for 6 mos given the following facts:

JC Positive and

Even though there may be secondary-progressive disease, if there is any active inflammation on an MRI documented by gadolinium enhancement, Tysabri may be appropriate. Also, if there are any clinical relapses still occurring even though there is progressive disease, Tysabri may be appropriate.

At the present time, these scenarios would be the only appropriate use of Tysabri in patients with secondary-progressive multiple sclerosis. Note: I have never had an enhancing lesion.... NEVER. I have not had a relapse since probably 1998. No remission since 2003.

Do we think it may halt progression well enough and long enough to satisfy that risk v. benefit analysis we always must run?

[Redwings]

OK, I have a few thoughts. The issues that come to mind are things i would need the answers to if I were making the decision for myself.

Using the criteria you cited about Tysabri, I might make an exception for enhancing lesions. Catching enhancement relies a bit on the chance of doing an MRI during the few weeks that it might show up. That means I need to make an allowance for the possibility that a lesion may have enhanced and, by the chance of timing, I missed it. So it means more to me to know how long ago my last new lesion appeared, and put that in the context of how many MRIs I've had, and how frequently, since then. That's what tells me how active my disease is, not just enhancement that I might have missed.

I would also put my last remission (9 years ago) in the context of when my last new lesion appeared. That would give me an idea of how entrenched the damage is (axonal death vs. inflammation) vs. chances of stopping progression from old lesions vs. the possibility of intervening in any new damage.

If there haven't been new lesions in, say, a couple of years (I'm considering the lack of enhancement to be irrelevant), then the question arises of what exactly I'm hoping to intervene in if there's no indication of new lesions to act against. And that question applies not just to Tysabri, but to any intervention.

No matter what the answer is, the opposing question is, what will happen if I don't intervene? It's said that people don't regret what what they do as much as they regret what they don't do. So even if Tysabri doesn't appear to have a chance of stopping progression, I won't really know until I try it. It may not be a question of benefit vs. risk, but instead one of, how much risk am I willing to take just to see IF there's any benefit?

How likely am I to develop PML in 6 months? (You already know the risk is about 1:1000 for someone JC+.) The one factor that might sway me toward trying Tysabri is that it isn't known for causing much other trouble (e.g., major infections). So I would have to compare that risk to the kind of physical progression/disability I'm trying to stop.

If I were just, say, dragging a leg, I'm not sure even that risk would be worthwhile (based on not having a new lesion in more than a couple of years, my last remission being 9 years ago and my last relapse 14 years ago), because the chances of stopping progression don't look particularly promising. But I don't have mild disability or the chance of maintaining mild disability. I have a brainstem lesion and impaired breathing. That raises the stakes considerably, to the point that, even if I don't get any benefit, the chance I take to find out IF Tysabri might help could be a worthwhile trade-off, considering the seriousness of what I'm trying to stop.

It's the information you provided in your last post that makes the "whole bunch of other stuff" important. The "other stuff" that took Campath off the table is also what takes Cytoxan off the table. From what you've told us, it appears that the risk of developing other problems from one of those meds is greater than the chance of getting any benefit. Because of your longstanding progression without relapse or remission, the possibility of stopping progression with ANY drug appears to be low. I can appreciate your feeling that there may not be anything that will help at this point.

In your position, I would look at it this way. There doesn't seem to be a way to predict whether I'll develop infections or problems other than PML from Tysabri, but the risk of them appears to be relaltively low. So that brings me back to PML. If my odds of progression toward debilitating physical problems are greater than the 1:1000 odds of developing PML in 6 months -- and they appear to be -- Tysabri is probably worth trying. I would, though, be going into it more to reassure myself that I was taking a last opportunity to do something rather than do nothing. Then I might look into the possibility of getting into a stem cell study.

So now all you have to do now is answer all of those questions for yourself and see what you come up with.

[HereIam]

Redwings, thank you, somehow I knew you'd pull all the thought bubbles floating above my head and organize them. You did this very well and have, again, helped me to get my thoughts in order. You know I appreciate the time and thinking you have spent on my behalf.

When organized in the logical manner as you have, all of the thoughts gather and make the decision to try Tysabri for 6 months an easy one. Without your help, I would have had trouble making that decision peacefully.

And, to answer one of the questions in your answer, I have had no new lesions since being diagnosed in 2004, and I have been in the MRI often. I imagine the lesion load I have occurred in the 10-15 years it took them to diagnose me. ARGHHHH. Until I learned about axonal loss, I was disappointed when they'd toss me in the MRI yet again to see why my downhill march was continuing, and there'd be no new lesions. Huh, silly me.

Blessings, Redwings, and to all others that read this and think for me.

[Redwings]

You're welcome, HereIam. Please let us know how how it goes for you on Tysabri.

[HereIam]

Yes, I will do that. The way this thread has been built, I think it's a good encyclopedia of stuff and thoughts. We should write a book.

Off topic--I see you are in CA. My daughter did a college internship in Orange County last fall (we live in Massachusetts). That company offered her a job and she has accepted. I thoroughly enjoyed our visit to Orange County while she was there and look forward to many more in the years to come. It is a great climate for MS.

[rdmc]

good info from Redwings. Here's what I so dislike about the brainstem or medulla lesions, you have to be so careful with med choice, not just DMDs, but others too,when your autonomic system is affected. the side effects from the meds can intensify whatever autonomic dysfunction you're dealing with.