Cytoxan questions/experiences

[klmc0616]

Warning! This is my first time posting in a forum, so I apologize for the length.
I was diagnosed almost 10 years ago, when I was 20, after a year of ruling everthing else out because my lesions were not in the typical area for an MS diagnosis. Since that diagnosis, I have seen about 5 different neurologists (partially due to moving across the state). The neurologist who diagnosed me, diagnosed me (incorrectly) with PPMS and put me on Methotrexate. When I changed neurologists, I was changed to a diagnosis of RRMS, which made more sense, and was put on Betaseron. I was on that for about 10 months and did have one major flare up, but had to stop Betaseron because it gave me flu-like symptoms. Since then, I've been on IVIG, Copaxone, Copaxone with monthly steroids, and Tysabri. Stopped Tysabri because I was still having major flare ups and they believe I developed an antibody to it. I haven't been on a treatment since August, but am on my 2nd 3 day IV Solumedrol treatment in 3 months.

I saw an amazing neurologist affiliated with Brigham Hospital (referred to me by my local neurologist because she doesn't know where to go next with my treatment). The neuro in Boston wants me to start Cytoxan treatments. I'm aware of all the potential risks and side effects, but am leaning that the side effects will be worth if it can keep me active longer. I'm 30 and am a full time middle school teacher. I don't want to go into things too quickly, but also don't want to sit around and wait to see if more or worse symptoms develop.

I guess I'm just hoping to get some feedback from others who been on the treatment...side effects, tests needed in advance, dosage given, etc. I see my local neuro in 2 weeks, but she doesn't always present things clearly.

Sorry was so long, but I appreciate any insight that can be provided.
Thank you!

[ms er since 06]

I was on Cytoxan for 8 months last year. There was no improvement so I stopped taking it. I didn't have any side effects at all. I'm surprised they are suggesting this if you are RR - but I would try it if I were you. Keep us posted, and welcome to MS World.

[BigA]

Are you being seen by a multiple sclerosis specialist or general neurologist? Are you having many exacerbations per year? Is it necessary to go to increasingly powerful medications? What about Gilenya or going back on betaseron?

[bugpetrone]

Cytoxan for my MS

Hello, I have had 3 infusions of Cytoxan so far. The first one was on 10/3/11, then 10/31/11, and then 1/13/12. The reason why there was such a space between my 2nd and 3rd infusions is because I had a sinus infection and early signs of bronchitis. I just think that my immune system is so suppressed that I keep catching everything. The last time I had Cytoxan, in January of this year, I was okay for a few days and then on the 5th day after treatment, I was severely nauseous. I went to the ER and I ended up having to take my son with me. All of the testing they did (EKG, chest x-ray, bloodwork, urine test) came back normal. So now I am in the dark and I don't know what happened. I would like to hear more about people on Cytoxan. I also am wondering how long my neurologist is going to have me stay on Cytoxan. My next infusion is on 2/10/12 and my doctor wants me to go for it. I am a little nervous though. Any input would be appreciated, thank you.

[klmc0616]

Are you being seen by a multiple sclerosis specialist or general neurologist? Are you having many exacerbations per year? Is it necessary to go to increasingly powerful medications? What about Gilenya or going back on betaseron?

Every neurologist I've seen has been a multiple sclerosis specialist. The place I went to in Boston is one of the best rated MS clinics. With each year, I've had more and more exacerbations. Most of my exacerbations involve me dragging a leg and I've even tried physical therapy. I'm also getting nervous because I'm having vision issues. I had gone about 5 years with no (diagnosed) exacerbations. I then started by having 1-2 major exacerbations a year (4 years ago) andin the past year I've already had 3-4 major exacerbations.

I've looked into Gileyna, but I, personally (I know a lot swear by it) , I don't feel comfortable with the short amount of time it's been used and I've heard from a couple neurologists that there have been abnormal malignancies found after being on Gileyna. I refuse to go back on Betaseron...I had to miss whole days of school/work because I had horrible vomiting and diarrhea.

Many would probably think that I don't seem advanced or sick enough to warrant a form of chemo, but the disease has definitely progressed and I don't want to wait and see what more could happen. I want to continue to live a very active lifestyle, which includes continuing to teach full time.

[klmc0616]

Hello, I have had 3 infusions of Cytoxan so far. The first one was on 10/3/11, then 10/31/11, and then 1/13/12. The reason why there was such a space between my 2nd and 3rd infusions is because I had a sinus infection and early signs of bronchitis. I just think that my immune system is so suppressed that I keep catching everything. The last time I had Cytoxan, in January of this year, I was okay for a few days and then on the 5th day after treatment, I was severely nauseous. I went to the ER and I ended up having to take my son with me. All of the testing they did (EKG, chest x-ray, bloodwork, urine test) came back normal. So now I am in the dark and I don't know what happened. I would like to hear more about people on Cytoxan. I also am wondering how long my neurologist is going to have me stay on Cytoxan. My next infusion is on 2/10/12 and my doctor wants me to go for it. I am a little nervous though. Any input would be appreciated, thank you.

Do you know what the dosage amount is that they give you? My steroids nurse was on it previously for other medical reasons, but she was on the same dosage that they give to cancer patients. I'm curious as to the reasoning for them giving you the Cytoxan every 3 weeks. The neurologist that I saw last week said that for the first year it would one infusion a month, then in the next year, every 6 weeks, and in the year after, every 8 weeks.

[ItsOnlyMe]

I did pulse Cytoxan at, I think, 2600 milligrams per month for eight months. It started out not so bad but I did get sicker with each infusion but I have a very sensitive stomach. I didn't lose any hair and generally felt fine after a couple of rough days after the infusions.

I later went to Johns Hopkins and participated in a a high dose cytoxan trial that involved obliterating the immune system. That was naturally much harder because it was very high doses every day for four days until we had no white cells left. But that was a whole other animal than pulse cytoxan. The purpose was to destroy the existing immune system and reboot a new one.

Unfortunately, we realized in hindsight that I had transitioned to Secondary Progressive MS after I started chemo so it didn't help too much in the big picture but it sounds as though you're early in the disease process so you might see some real benefit. I was told that some MS cases could be more of a B cell problem than the usual suspects of T cells. Many of the targeted MS therapies are geared toward T cells but cytoxan hits both of them so it's more of a carpet bombing approach. It's been several years but I could swear that's the way it was explained.

I've heard there a couple of neurologists at Brigham & Women's hospital who swear by it and use it almost exclusively. I've also read that some MS Neurologists believe chemo is appropriate even in high functioning patients - especially as an induction therapy. I attended a speech by one of the MS Rock stars and I remember him saying that he has patients on chemo and keeps them on injectable medications. He also said that if a newly diagnosed patient's MRIs show large amounts of inflammation, he uses cytoxan to settle down the immune system for lack of a better way to put it.

[bugpetrone]

Do you know what the dosage amount is that they give you? My steroids nurse was on it previously for other medical reasons, but she was on the same dosage that they give to cancer patients. I'm curious as to the reasoning for them giving you the Cytoxan every 3 weeks. The neurologist that I saw last week said that for the first year it would one infusion a month, then in the next year, every 6 weeks, and in the year after, every 8 weeks.

I am actually not sure about the dosage, I might make a phone call to my neurologist tomorrow to find out. They are actually giving me the Cytoxan once every 4 weeks. I have been on 7 different MS medications prior to the Cytoxan so maybe my neurologist wants to start off with once every 4 weeks to be aggressive, for now. I will see her again in March to discuss what we are going to do next. I just feel lost.

[bugpetrone]

Do you know what the dosage amount is that they give you? My steroids nurse was on it previously for other medical reasons, but she was on the same dosage that they give to cancer patients. I'm curious as to the reasoning for them giving you the Cytoxan every 3 weeks. The neurologist that I saw last week said that for the first year it would one infusion a month, then in the next year, every 6 weeks, and in the year after, every 8 weeks.

I called this morning and found out about the dosage. On 10/3/11, it was 500mg. On 10/31/11, it was also 500mg. Then on 1/13/12, it was 900mg.

[klmc0616]

I called this morning and found out about the dosage. On 10/3/11, it was 500mg. On 10/31/11, it was also 500mg. Then on 1/13/12, it was 900mg.

Thank you for calling to find out, that was very sweet! I think the neurologist in Boston told me that I'd be every four weeks for the first year of treatment.

I'm so sorry you feel lost, but please know that you are not alone. I'm kind of in that place now, as well. When people hear about the aggressive treatment I'm most likely going to be starting, many give me the typical "but you look fine" or "you don't look sick." It shouldn't, but those comments play around in my head. I don't look "sick," but I haven't had any luck on other treatments and haven't been on any treatment since August and am currently going through IV steroid treatments to treat my second flare up in 3 months. With the exception of a dragging leg during several flare ups, I still have full mobility, for which I am extremely thankful. I feel like this next step, for me, is best because I would rather lean on the side of aggressive treatment then to wait around and see if I get that sick. I don't sounding a bit selfish when I say that I don't want this disease to change my life anymore than it already has. I need to work because I get depressed if I'm home too long for flare ups and my husband and I travel on different Disney vacations several times a year, and couldn't imagine not being able to continue those vacations because if this stupid disease.

Please keep your head up and I'm hear if you need to chat or just to vent!

[klmc0616]

I did pulse Cytoxan at, I think, 2600 milligrams per month for eight months. It started out not so bad but I did get sicker with each infusion but I have a very sensitive stomach. I didn't lose any hair and generally felt fine after a couple of rough days after the infusions.

I later went to Johns Hopkins and participated in a a high dose cytoxan trial that involved obliterating the immune system. That was naturally much harder because it was very high doses every day for four days until we had no white cells left. But that was a whole other animal than pulse cytoxan. The purpose was to destroy the existing immune system and reboot a new one.

Unfortunately, we realized in hindsight that I had transitioned to Secondary Progressive MS after I started chemo so it didn't help too much in the big picture but it sounds as though you're early in the disease process so you might see some real benefit. I was told that some MS cases could be more of a B cell problem than the usual suspects of T cells. Many of the targeted MS therapies are geared toward T cells but cytoxan hits both of them so it's more of a carpet bombing approach. It's been several years but I could swear that's the way it was explained.

I've heard there a couple of neurologists at Brigham & Women's hospital who swear by it and use it almost exclusively. I've also read that some MS Neurologists believe chemo is appropriate even in high functioning patients - especially as an induction therapy. I attended a speech by one of the MS Rock stars and I remember him saying that he has patients on chemo and keeps them on injectable medications. He also said that if a newly diagnosed patient's MRIs show large amounts of inflammation, he uses cytoxan to settle down the immune system for lack of a better way to put it.

Thank you so much for your response! It was very informative and helpful! I greatly appreciate it! I'm so soory, however, to hear that you went through all that just to find out that you had moved into Secondary Progressive MS. Good luck and thanks again!

[bugpetrone]

Thank you for calling to find out, that was very sweet! I think the neurologist in Boston told me that I'd be every four weeks for the first year of treatment.

I'm so sorry you feel lost, but please know that you are not alone. I'm kind of in that place now, as well. When people hear about the aggressive treatment I'm most likely going to be starting, many give me the typical "but you look fine" or "you don't look sick." It shouldn't, but those comments play around in my head. I don't look "sick," but I haven't had any luck on other treatments and haven't been on any treatment since August and am currently going through IV steroid treatments to treat my second flare up in 3 months. With the exception of a dragging leg during several flare ups, I still have full mobility, for which I am extremely thankful. I feel like this next step, for me, is best because I would rather lean on the side of aggressive treatment then to wait around and see if I get that sick. I don't sounding a bit selfish when I say that I don't want this disease to change my life anymore than it already has. I need to work because I get depressed if I'm home too long for flare ups and my husband and I travel on different Disney vacations several times a year, and couldn't imagine not being able to continue those vacations because if this stupid disease.

Please keep your head up and I'm hear if you need to chat or just to vent!

Thank you so much for your response! I get the "you don't look sick" comments too. I also have full mobility and I am currently not going through a flare up. But there are two things that are always with me: fatigue and depression. I am going to continue with the Cytoxan until my neurologist/ms doctor tells me that I can no longer take it. Then I am not sure what I am going to do but I am going to stay positive. The reason why we will be stuck after this point is because I have already been on 7 different MS medications: Betaseron, Tysabri, Rituximab, IVIG, Cellcept, Myfortic, and Gilenya. Nothing just seems to be sticking for me. Maybe the Cytoxan (aside from the side effects I have been experiencing like restlessness and nausea) will be my answer, for now.

[klmc0616]

Have any of you that have been on Cytoxan had your doctor suggest installing a port? I was speaking to my at home steroids nurse and she is curious if they might want to put one in because my veins are incredibly deep and hard to find.

[ItsOnlyMe]

Have any of you that have been on Cytoxan had your doctor suggest installing a port? I was speaking to my at home steroids nurse and she is curious if they might want to put one in because my veins are incredibly deep and hard to find.

When I was Johns Hopkins they installed a Hickman line in the chests all of the high dose cytoxan patients because they drew blood everyday for a month and gave us occasional medications. It saved us dozens of sticks. Mine got infected and had to be removed a few days before I was to be sent home. I remember a nurse mentioned the possibility of installing another type of long term port in my arm but they decided to just stick me for the final few days.

[MarkLavelle]

Have any of you that have been on Cytoxan had your doctor suggest installing a port? I was speaking to my at home steroids nurse and she is curious if they might want to put one in because my veins are incredibly deep and hard to find.

No Cytoxan for me, but deep veins, and when I had cancer in '96 my chemo regimen was four 2-day infusions, each four weeks apart. The second day the nurse said "you really ought to get a port!"

Getting it installed and taken out (after it hadn't been used for a year) wasn't too bad (out patient, local anesthesia), but I don't think they thought it'd ever be coming out (like I've said before, I'm a lucky guy!).

It you figure on Cytoxan infusions for more than a few months it'll almost certainly be better with a port...