Re: Cytoxin?

[Guest guest]

There were several people in the past that went to Cytoxan-- but they should consider the Biological Response Modifiers-- Enbrel, Humira, Cellcept, Remicade and there are a couple of new ones-- first.

Methotrexate is only going to help some of the issues with sarc-- and honestly, there is nothing that is going to cure it. Usually they'll add Plaquenil, then add Imuran or Arava (DMARDS--Disease Modifying Anti-Rheumatic Drugs) then on to the BRMs. WWW.ARTHRITISTODAY.ORG has a great drug reference guide- and explains these drugs in simple language. WWW.SARCOIDOSISSHARMA.COM is a great site to get questions about the advancing treatment of sarcoidosis. Dr. Sharma is the #2 doc in Sarcoidosis-- so his info is wonderful.

Cytoxan has some nasty side effects-- it is generally the choice for breast cancer-- and we end up on a much smaller dose-- but still the full effects of chemo. Hopefully someone will come forward and be able to share a personal experience with it.

Our MESSAGE ARCHIVES AND LINKS SECTIONS have a great selection of articles and posts dealing with all kinds of issues-- so do check it out.

What are you mom's symptoms? Where is she living? Ask away, and we'll try to answer as quickly as possible. All of us are sick with sarc-- so don't worry if a day or two goes by before you hear from us.

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Wed, March 3, 2010 4:34:00 AMSubject: Cytoxin?

Hi Everyone,My mom has been battling neurosarcoidosis for about 5 years now. She has been on methetrexate( sp?) and steroids for the past 2 1/2 years, and before that steroids alone, but her last CT scan showed more granulomas in the brain that are inoperable. They want to switch her to cytoxin. Has anyone had any success with this treatment? Any information is appreciated.Thanks so much,

[Guest guest]

Thanks so much .

Right now with things worsening she has pain up the side of her head, in her ear

and on the top of her head. She is on lyrica for the pain. She has also had

double vision issues, dizzyness, pains down her legs when she lays down for too

long etc. I wish she was more computer savvy so that she could get help and

support from you guys.

We live in the Bahamas. My mom is on the island of New Providence and I am on

the island of Abaco. She has been to Cleveland Clinic in Ohio, and this is

basically what they recommended, but I know nothing will cure it. It seems

like its all a guessing game.

Thank you for the info and I'll have a look and see what I can find.

Thanks again.

>

> There were several people in the past that went to Cytoxan-- but they should

consider the Biological Response Modifiers-- Enbrel, Humira, Cellcept, Remicade

and there are a couple of new ones-- first. 

> Methotrexate is only going to help some of the issues with sarc-- and

honestly, there is nothing that is going to cure it.  Usually they'll add

Plaquenil, then add Imuran or Arava (DMARDS--Disease Modifying Anti-Rheumatic

Drugs) then on to the BRMs.      WWW.ARTHRITISTODAY.ORG     has a great

drug reference guide- and explains these drugs in simple language. 

WWW.SARCOIDOSISSHARMA.COM is a great site to get questions about the advancing

treatment of sarcoidosis.  Dr. Sharma is the #2 doc in Sarcoidosis-- so his

info is wonderful.

> Cytoxan has some nasty side effects-- it is generally the choice for breast

cancer-- and we end up on a much smaller dose-- but still the full effects of

chemo.  Hopefully someone will come forward and be able to share a personal

experience with it. 

> Our MESSAGE ARCHIVES AND LINKS SECTIONS have a great selection of articles and

posts dealing with all kinds of issues-- so do check it out. 

> What are you mom's symptoms?  Where is she living?  Ask away, and we'll try

to answer as quickly as possible.  All of us are sick with sarc-- so don't

worry if a day or two goes by before you hear from us.

> Take care,

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ________________________________

>

> To: Neurosarcoidosis

> Sent: Wed, March 3, 2010 4:34:00 AM

> Subject: Cytoxin?

>

>  

> Hi Everyone,

> My mom has been battling neurosarcoidosis for about 5 years now. She has been

on methetrexate( sp?) and steroids for the past 2 1/2 years, and before that

steroids alone, but her last CT scan showed more granulomas in the brain that

are inoperable. They want to switch her to cytoxin. Has anyone had any success

with this treatment?

> Any information is appreciated.

> Thanks so much,

>

>

[Guest guest]

Hi,I have been reading these messages for about 10 months, but haven't said anything yet.  I hope I'm doing this the correct way! Last May I was diagnosed with neurosarc after I had a month of what appeared to be a stroke.  It was my second major episode with my first being about 8 years earlier, and for the last 8 years I've been treated by a great DO doc with acupuncture and pain meds for neuropathic pain.  He couldn't figure out what was going on with me, but he had a great deal of compassion for the fact that I was dealing with levels of pain that are consistently between 6-8.  Last May I was admitted to G'town Hospital for 2 weeks where I was diagnosed by Carlo Tornatore, who has one of the larger strictly neurosarc practices on the east coast (according to him! ).  I spent last summer relearning to walk again, and crossed over my 30th bday working hard at speech therapy and PT so I could head back to work as a special ed teacher this fall. 

I've been being treated with MTX and Prednisone, and Dr. T's theory is Pred shouldn't be a long term solution. We started the taper late last summer, and about when I hit 5 or 6mg, major effects started coming back.  That was in Novemberish.  We increased the the MTX, although it didn't work.  I had 2 falls around Xmas time, my speech problems returned, as did the facial palsy.  In January, I did a 5 day Solu-Medrol drip.  That worked miracles.  I could open my eye again, talk, and for the first time since last March, my feeling of being on a boat was SO much better.  About 2 weeks later, though, the symptoms slowly started to return.  After talking to Dr. T, and doing my own research, that is not so good, bc the SM should've lasted longer. I saw him last week, and requested a monthly SM pulse dosing.  I had done my research and wanted to try it.  He was ok with it, and so I had a 1 day drip last week.  It cut the edge off the symptoms, but 1 day just didn't kick 'em like the 5 days did.  When I saw him last week, he told me that when I saw him in March, if I wasn't significantly better, then his next plan would be Cytoxan.  We obviously talked about all of the issues with it (chemo, infertility, etc), but in his mind, he is weighing quality of life at my young age with being able to hopefully put my neurosarc into remission.  He says in his practice he's had a lot of success with using Cytoxen with neurosarc patients and having them go into long term remission.  We've talked a lot about Cellcept, and at once was an option, but because my symptoms continue to come back with such a vengeance, and the steroids aren't keeping them back, he wants to pull out the big guns. He feels the cost (b/c many insurances won't pay for it) versus the wasted time if it doesn't work aren't worth it.

 I am using this month to do a lot of research so that I know what my answer would be if he wants to do it.  I, obviously, want to do whatever I can to get the most of my life back possible.  Right before this last major attack last spring I had just run my third half marathon, I want to run again; I want to go on a normal date and not worry about my speech or whther I'll fall over on the way to the bathroom (or at least if I do, it is cause of the glass of wine I drank! ).  I've spoken to some doctors, I'm seeing my gyno to talk to her about the specifics of the infertility issues, and I've spoken to some people who have been on Cytoxan. I have heard from some who it hasn't worked, and some it has.  Most people i have heard from say it takes time and isn't an instantaneous thing.  I am an elementary school teacher, so the fact that it is chemo and the WBC thing is a little scary for me.  Plus, I'm already losing my hair with MTX, so I'm pretty sure it'll go with Cytoxan.   I'd love to hear about anyone's experiences. 

Thank you so much for everything everyone shares here.  I read a lot of it and have gained a great deal of knowledge.  You are truly a great group of people with hearts of gold.  Kathy

 

There were several people in the past that went to Cytoxan-- but they should consider the Biological Response Modifiers-- Enbrel, Humira, Cellcept, Remicade and there are a couple of new ones-- first. 

Methotrexate is only going to help some of the issues with sarc-- and honestly, there is nothing that is going to cure it.  Usually they'll add Plaquenil, then add Imuran or Arava (DMARDS--Disease Modifying Anti-Rheumatic Drugs) then on to the BRMs.      WWW.ARTHRITISTODAY.ORG     has a great drug reference guide- and explains these drugs in simple language.  WWW.SARCOIDOSISSHARMA.COM is a great site to get questions about the advancing treatment of sarcoidosis.  Dr. Sharma is the #2 doc in Sarcoidosis-- so his info is wonderful.

Cytoxan has some nasty side effects-- it is generally the choice for breast cancer-- and we end up on a much smaller dose-- but still the full effects of chemo.  Hopefully someone will come forward and be able to share a personal experience with it. 

Our MESSAGE ARCHIVES AND LINKS SECTIONS have a great selection of articles and posts dealing with all kinds of issues-- so do check it out. 

What are you mom's symptoms?  Where is she living?  Ask away, and we'll try to answer as quickly as possible.  All of us are sick with sarc-- so don't worry if a day or two goes by before you hear from us.

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis

Sent: Wed, March 3, 2010 4:34:00 AMSubject: Cytoxin? 

Hi Everyone,My mom has been battling neurosarcoidosis for about 5 years now. She has been on methetrexate( sp?) and steroids for the past 2 1/2 years, and before that steroids alone, but her last CT scan showed more granulomas in the brain that are inoperable. They want to switch her to cytoxin. Has anyone had any success with this treatment?

Any information is appreciated.Thanks so much,

-- " In three words I can sum up everything I've learned about life.  It goes on. "  - Frost