Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 Lori I had one brain ventricle clog up and I was also getting blockage in the 4th ventricle. I guess that means multiple lesions? My sarc has only been found in the brain and spine so far. I am on Cytoxan and have been for 2 years. I guess it is working but I did have to have my shunt replaced last summer. I am also due for another mri next month but I don't think it has been set up yet. I am trying to get off the Cytoxan and try something a little less toxic.Join our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 , Thanks so much for replying. I have been on Methotrexate, Imuran, Prednisone, Plaquenil, CellCept, Cytoxan, Remicade, and pain meds. Everytime I have another MRI (every three months), it is worse. They took me off the Cytoxan after three months because it did not make a difference. I have to hope they know what they are doing, but think I am running out of options. I hope you can get off the Cytoxan. I know it is not the best thing to be on. Thanks again . Lori > > Lori > I had one brain ventricle clog up and I was also getting blockage in the 4th ventricle. I guess that means multiple lesions? My sarc has only been found in the brain and spine so far. I am on Cytoxan and have been for 2 years. I guess it is working but I did have to have my shunt replaced last summer. I am also due for another mri next month but I don't think it has been set up yet. I am trying to get off the Cytoxan and try something a little less toxic. > > > Join our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 > http://groups. yahoo.com/ group/Mittens_ for_Akkol/ > > > grannylunatic@... > > --------------------------------- > Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Lori, pardon me for not knowing or remembering this, but do you have biopsy-proven sarc somewhere else--lungs, lymph nodes, etc.--to be fairly sure that these lesions are indeed sarc? We don't recommend brain biopsies, but a positive biopsy somewhere else would sure be helpful. Also, do your symptoms worsen along with the MRI results? Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Brain lesionsDate: Wed, 22 Aug 2007 12:38:25 -0000 , Thanks so much for replying. I have been on Methotrexate, Imuran, Prednisone, Plaquenil, CellCept, Cytoxan, Remicade, and pain meds. Everytime I have another MRI (every three months), it is worse. They took me off the Cytoxan after three months because it did not make a difference. I have to hope they know what they are doing, but think I am running out of options. I hope you can get off the Cytoxan. I know it is not the best thing to be on. Thanks again . Lori>> Lori> I had one brain ventricle clog up and I was also getting blockage in the 4th ventricle. I guess that means multiple lesions? My sarc has only been found in the brain and spine so far. I am on Cytoxan and have been for 2 years. I guess it is working but I did have to have my shunt replaced last summer. I am also due for another mri next month but I don't think it has been set up yet. I am trying to get off the Cytoxan and try something a little less toxic.> > > Join our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 > http://groups. yahoo.com/ group/Mittens_ for_Akkol/ > > > grannylunatic@...> > ---------------------------------> Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool.> Booking a flight? Know when to buy with airfare predictions on MSN Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Do cytotoxic drugs ever cause neurotoxic sequelae? I would think that they might, given their inherent toxicity. I know that some chemo drugs cause a condition called " chemo brain " where people have major neurological issues for years afterwards. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Since these are powerful drugs, they have many potential side effects. The biggest concern with Cytoxan is the increased risk of bladder cancer, especially after a couple of years use. As with any drug or treatment, you really need to get accurate information, then weigh the risks & benefits, realizing that you are usually looking at potential risks & potential benefits. As you know from reading group members' posts, some have very good results from Remicade, for instance, without intolerable side effects; others have positive results, but unacceptable side effects; still others have no side effects, but no improvement either. Most of the time it's just a roll of the dice. Like financial investment, much depends on the individual's tolerance for risk, as well as how much they have to gain or lose. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Brain lesionsDate: Wed, 22 Aug 2007 09:34:24 -0400 Do cytotoxic drugs ever cause neurotoxic sequelae? I would think that they might, given their inherent toxicity. I know that some chemo drugs cause a condition called "chemo brain" where people have major neurological issues for years afterwards. Learn.Laugh.Share. Reallivemoms is right place! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Yes, I had lung biopsies two years ago and was positive for sarcoidosis. It is now in my cervical spine, spleen and all over my brain. They have ruled out MS and others. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Yes, my symptoms get worse also. I don't know what to do. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 Do cytotoxic drugs ever cause neurotoxic sequelae Live What in the world is that? I'm on Cytoxan. Every time I have tried to get in webmd tonight I get kicked offline. Don't freak me out! LOLJoin our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Need a vacation? Get great deals to amazing places on Yahoo! Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 , it just means neurologic side effects, esp. long term. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Brain lesionsDate: Fri, 24 Aug 2007 23:24:26 -0700 (PDT) Do cytotoxic drugs ever cause neurotoxic sequelae Live What in the world is that? I'm on Cytoxan. Every time I have tried to get in webmd tonight I get kicked offline. Don't freak me out! LOLJoin our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic (AT) yahoo (DOT) com Need a vacation? Get great deals to amazing places on Yahoo! Travel. More photos, more messages, more storage—get 2GB with Windows Live Hotmail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 neurotoxic sequelae Simple language- it's brain damage or neurological deficits from the chemo. The question of can these meds cause more CNS symptoms-- sure-- and rarely. If you are the one that gets the side effect- then it's a problem. If you are the MAJORITY that doesn't have a problem- then it's not a problem. If we were to read all the POSSIBLE side effects from any medication, whether it's over the counter, or by prescription-- we'd run as fast as we can away from it all. However, we know what our life is like without treatment-- so if you can take something-- and improve your quality of life-- then that is a decision you get to make. Is is a crapshoot? Yep, many times. But is was a bigger pain in the ass not to be able to think clearly or function. So- we weigh the benefits against the downside, and make a choice. Fear creates more illness and keeps us stuck in the pain and despair we are in when we can't get the treatment-- and we could allow that same fear of "what if's"-- to keep us from getting better. Personally, I will choose to try the meds- and see if that helps. If not, on to the next step. I feel that to let myself live in the fear would be a much bigger price to pay. Sincerely, Tracie NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 , it just means neurologic side effects, esp. long term. Thanks Rose. Live ya gotta dummy it down for me!Join our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
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