Looking for any input: Cytoxan Decision

[sich59]

I've been getting cytoxan infusions for almost 2 years now. I get them every 4 or 5 weeks. The routine is a gram of steroids (solumedrol) followed by the cytoxan.

When I first started, I took them for 3 months and then stopped. I stopped because I didn't notice a substantial difference, and figured that if it didn't help why take it.

In the two months that followed however, I noticed that my symptoms were getting worse, so I started up the reginement again and haven't stopped since.

The way my neuro explained it, the cytoxin ins't necessarily going to make things better, but it should help minimize the progression. And I have found this to be true.

I have PPMS. I think that while my symptoms do get worse with each passing year, the difference is minimal, and I attribute that to the treatments.

One thing to keep in mind: The drug is strong. It is chemo after all. I get a very small dose (only 400mg) and I feel sluggish and tired most of the weekend. When I first started taking it I received 600mg and pretty much slept all weekend. I've heard of some people who get twice that amount. You need to plan on not doing much after your infusion. You also need to make sure you get some anti-nausea medicine with your infusion or you are going to be sick as hell.

Drink plenty of fluids afterwards as well for several days afterwards. It will help flush the stuff out of your system.

Good luck

[0485c10]

later,

I was on Tysabri for a year before the JC virus testing was done, and during that year I experienced progression. I have been on Avonex and Copaxone also.

As for your statement you limit you treatment options by doing cytoxin first...not bright. .... well, I'll not respond in detail to that but really..... let's choose our words more carefully.

original,

Hey all,
Am faced with a great big decision and am looking for input. Have had MS since probably 1996, dx 2004, and since then it seems to be SPMS. Have been on Copaxone, Avonex, then back on Copaxone..

i apologize that my choice of words offended you. And was very relieved to see you had come to the same conclusion that trying tysabri first before going to an immune suppressant was the most practical path, as that is what you did. when i wrote the offending words i believed your only experience with ms meds was with copaxone & avonex because that is what you wrote in your opening post.. I felt secure in what i wrote because that is one of the options you were given by your neuro at Partners MS Center in Boston(sounds prestigious)--

Glad to know you gave tysabri a try first as that is the order it has to be done in if used at all. Good luck with the improvement you will get from cytoxin

sounds like it can be used successfully, for quite a while.
wish you much GOOD luck with it.

[0485c10]

I really advise you to view this viedeo from the Rocky Mountain MS center, at least Dr.Timothy Vollmers 5 presentation on all the new and upcomming drugs within the next 2 years and how they will be target for individual ms progression.

Link to videos of that confrence found here:
http://www.msworld.org/forum/showthread.php?t=118786

[HereIam]

Thanks everyone for your input and support.

Steve, your experience is a great help and motivator, it can work, one can live on it. I will hold those realities close as I walk this road. Yes, they will be administering an IV anti-nausea med and will send me home with a script. And, I know what I've got now is here to stay so do not expect improvement. Let's just put the brakes on! My guess is I'll have a million questions as I go along so you'll hear from me.

04 thank you for sticking with me! I have started to watch the videos from Rocky Mountain Center and they are very informative. Will take a while to get through them all.

[HopeforDeeDee]

Beginning Cytoxan

I just had my first dose of cytoxan 2/28/12. Neurologist only started me with half the dose. Wants to see how I tolerate it and given my low weight may take our time to reach maximum does. No side effects to complain about. Started on avonex, brief period with rebif, tysabri for 2 years, tried gilenya but didn't agree with me -- some breathing issues. Now progressed to cytoxan. Experiencing mobility issues, neuropathy pain, MS hug, fatigue, fine motor issues, cold hands and feet, anxiety and depression. Need to know what others are doing to combat similar symptoms. Not working now and having trouble finding something to do besides feeling so bad.

[HereIam]

DeeDee, thank you for sharing your experience thus far.

How many mg is your infusion? I am curious. I do not know what my dosage will be.

You need to discuss symptom management with your neuro, there's a big arsenal of meds to help with all the issues you mention. Ampyra for walking, Gabapentin for tingling and numbness, and many anti-depressants for the anxiety and depression (I take Zoloft).

I had to stop working in 2005, and now I no longer drive. It has been an adjustment, but I can tell you there is life after changes such as these. You can learn some new crafts or perhaps volunteer jobs that will lift you up, get you out among other nice people.

[rdmc]

Hey all,


The neuro has attributed this progression of this symptom to an impressive lesion on my brain stem (you know, the place where all autonomic stuff begins?).


I am leaning towards going onto Cytoxan, as I think this swallowing problem is simply the tip of the iceberg if we start considering all this lesion could do, and because Cytoxan seems to be most effective in progressive forms.


Have to add, that when diagnosed with MS, I think the first thing that came to my mind was "oh no a wheelchair someday." Huh, silly me, if I only knew then what I knew now, that wheelchair wouldn't look so bad.

I have one of those lesions, so I can relate. Couldn't figure out why so much stuff was going "wonky" all of a sudden, but MS neuro says it's all traced to the medulla lesion getting bigger. (Actually from a purely academic perspective, they're interesting lesions, in that they can affect so many different areas that seem unrelated...but that's from an intellectual perspective...otherwise they're just scary.)

I had the swallow test, my swallower's working okay for now, tongue not so good, we're going to try botox for the tongue.

My BP is the autonomic function affected the most. That lesion also causes lots of cranial nerve issues and the cross over effect a lesion in the medulla can cause (left arm/right leg problems.)

The BP is the hardest to deal with. I have to monitor it like I was a diabetic monitoring glucose levels (take med if it's high, don't take med if it's low...wear a patch that distributes low dose throughout the day) It's a scary thing knowing you have absolutely no control over it going into the stratosphere whenever it pleases, or plummet to where I can barely function.

I found your statement interesting about the heat used to cause the problem, now you have it more often. I've noticed that the things that affect my MS (heat, stress, loud noises/lights) now affect the autonomic functions as well.

Swallowing is the same deal, one of those things that lesion affects and you can't control. You've got to be able to do it, or you're looking at a feeding tube or aspiration pneumonia. BTW, that barium stuff is awful tasting, other than that, not a hard test.

If I was presented with the Cytoxan choice, I think I'd jump at it, using much the same logic as Redwings. I'm holding out for BG12 (supposedly a year and it should be out)...which the MS neuro hopes will help...in the meantime, because of the BP and possible heart involvement from medulla lesion, I have to be careful, no Gilenya, no Tysabri...we're sticking with the Beta because I know it doesn't cause BP problems for me. Of course we don't know what BG12 will do to my BP, so that's an unknown at this point.

Just know I empathize the autonomic dysfunction stuff is freaky. Hope the cytoxan helps slow it down.

[HereIam]

HI RD and thank you for sharing your experience with a situation similar to mine. I am sorry that you, too, have similar whackiness.

I had my swallow test done, where they dipped certain foods in barium (yum) and had me swallow it. Well, everything was perfect, but I pointed out to the radiologist that the foods they had me swallow are not foods I normally eat so I didn't feel it was an accurate experience. And, I'm always good for one swallow, it's many in a row that get me. So, the next day they had me bring in a sampling of "my diet," and had me take multiple bites and swallows of each food and sure enough, it's not all getting down. If I hadn't spoken up, then I would have walked away "perfect."

Then it was onto the pulmonary consult, and yes, my breathing is being affected by MS, and that's one of the reasons it is so hard for me to speak for long. The other reason is a tongue that ain't working right.

As for the blood pressure issue, yours sounds very complicated and bothersome. I, too, have blood pressure problems but it has manifested itself as low blood pressure and frequent bursts of PVC's (skips).

I will let you know how I do on Cytoxan, and especially, how well it works. I expect that once my time on Cytoxan is done, I will also end up on BG, although it is for those with RRMS, it's better than nothing, I guess.

So, on we go.

[rdmc]

Aren't you the smart one making them repeat the swallow test with normal foods. How often do we eat applesauce anyway

I haven't really noticed any swallowing problems but had a similar situation with my vocal cords. The ENT scoped me and said everything seemed fine, but that was initially with a couple lala's and hehe's...my voice and larynx give out after I've talked for awhile, same with the tongue. As with lots of things MS, it's not the initial use, but the repeated use that begins to cause the problems.

My respiration is fine on inspiration, not so good on the exhalation. You're supposed to be able to count to a certain number when you exhale, and I can't make it there, that's why I run out of air when I'm talking. But it's okay for now.

As I've said before, my GP, who is a great guy, says trying to manage the symptoms is like trying to keep a bunch of snakes in a box. It's a complicated and frustrating task for sure.

Hope the cytoxin does the trick.

[HereIam]

RD--I just noticed you live in Florida. OMG how can you stand that climate? For me, anything over 65 and I am toast. My poor husband is freezing year round, because in the winter I keep the house at around 64 and in the summer 65. He's a skinny guy, that's what he gets for not fattening up like me.

And, yes, a lot of the traditional tests are ridiculous, in that they look at something once, and shoot we can all do most things once. Talk for 2 minutes? sure, sign me up. Talk for 10? only if I can have a nap afterwards please. Ditto with swallowing. And, walk on that thin carpet at the MS Center for 25 feet, absolutely no problem. Walk the dogs around the very small block? Dangerous, Difficult, Deadly.

[BigA]

Thank you for your kind understanding and support, Redwings. In all of your posts, you are kind and measured and wise. I am glad that you are here.

You and I are in disease situations that can kill us, and so the treatments we may face do not apply to all. And, we face them because we have no choice.

Cytoxan may not stop this progression, and if it doesn't, then I will move on to the next big gun in the line up.

To others who read this---please know that "my MS" is not a typical course of the disease. I don't want new members to read my experience and think this is where you are headed, because you are not. As you read posts on this board, you'll see that there are very few that have autonomic dysfunction from this disease.

I am very special, as is Redwings.

Hereiam. Kudos to you for thinking of others so that they would not worry unduely based on your experience and for sharing your intelligent decision making process with the community. I hope the treaments will help you.

[rdmc]

RD--I just noticed you live in Florida. OMG how can you stand that climate?

Two words: Air Conditioning!!!!

I work from home, but when I have to go out, it's from air conditioned house, to air conditioned car, to air conditioned office or store.

I don't spend any time outdoors most of the year. We do live in a home with lots of windows and we're near a nature preserve, so I do all my nature watching (which is Florida is interesting, everything from gators, to coyotes, to bald eagles and an array of water birds) from inside my nicely cooled home.

I have a baclofen pump, so I can walk, just can't walk very far anyway, so I don't miss the outdoors too much.

You bring up a good point about MS testing. Do an action once or twice, no problem...keep it up for a few minutes, big problem. That's why I always tell limbolanders, if your neuro exam took 10 minutes, go get another opinion. They didn't spend enough time with you to really recognize deficits.

[HereIam]

Sounds like you've got Florida all figured out! Nice to be able to enjoy the outdoors from this side of the air conditioned glass.

Yes! on the testing. My neuro appointments are always one hour, and that makes a huge difference. At my last appointment I reported on the difficulty speaking and by the end of the appointment, she got to see that problem in action. A ten minute appointment would not have captured that or the tremors in my jaw and lips.

Now I want the neuro to come to my house and go around the block with me and my dogs. Then she'd really get to see something! In good weather I still spin the dogs around the block twice a day and it is incredibly difficult and probably not safe, but it feels like an important part of each day. I am lucky to have really good neighbors, I swear if they see me go out and I don't return in the proper time frame, they'll come looking for me.

[rdmc]

I've got the jaw, tongue, and lip tremors too...but they upped my oral baclofen and klonazepam, and it seemed to calm it down a bit...but that's why we're trying the botox.

Wow, sounds like you have a great neuro. My regular neuro alots maybe 15 minutes, my MS neuro probably an hour (but not entirely with that neuro, but part with a med student or resident.) My GP is great and he'll take all the time he thinks he needs.

We have dogs, but my only responsibility is letting them out into the back yard a couple times during the day. They're Weims and need exercise, but are content to be couch potatoes during the day as long as my husband takes them for their long run (he rides his bike, they run) each evening.

Pets, IMO, are such a source of joy and entertainment...glad you are still able to make the walk with yours (hope you carry a cell phone with you, just in case.)

And good neighbors are a wonderful to have. It gives you a sense of security.

[lori]

Hereiam,
Did your neuro say anything about Novatrone? The neuros at my ms clinic use that instead of cytoxan. I've been in a wc 10yrs, but now my hands are starting to go. I'm just wondering which way to go.

thanks for any info,
lori