This Is MS Multiple Sclerosis Knowledge & Support Community

BTw...THEY CALLED AND APOLOGIZED TO ME AND i SEE cORBOY AGAIN LOL

OK you need to call your neuro and ask him Monday if he wants to do Dr. Brodsky's High Dose Cytoxan protocol, or if he wants to do the pulsed version

Does Dr. Brodsky do the HI-Cy I haveen trying to get it for months.

It's doctor Robert Brodsky from Rush who's HiCy protocol it is.

Hi Chris, I'll be working with Dr. Balabanov from Rush. Hopefully I'll start in january. All insurance company dependent at this point. Can you tell me about your experience from that regard?
Colleen

msmything wrote:Hi Chris, I'll be working with Dr. Balabanov from Rush. Hopefully I'll start in january. All insurance company dependent at this point. Can you tell me about your experience from that regard?
Colleen

Hello Colleen different Chris here, was wondering if you could help. I am scheduled to start cyclophosphomide therapy in 9 days. Its a major infusion, four hours, every 28 days. How do I know Im doing right with this...my neoro told me the hicy is not something they do there and could not refer to anyone accept John Hopkins. I am dds 6.5, I beileve he said this is not what they look for typically? I have read conflicting reports however. Cant type anymore. Would love a phone number or referel to someonw currently treating in HICY

Thanks,
Chris A Atlanta, GA, can travel - so anywhere I can consult and schedule would be greatly appreciated!

Hi other Chris, the treatment regimen that you are getting is a pulse therapy of cyclophosphamide. Honestly I don't know how many months you will be receiving it. I guess your Doc will assess the situation after each infusion.

The way that I'll be receiving it is 4 days straight in the hospital. Then they give you medication to 'condition' your blood so that you can exist 'on the outside' as it were.

I guess you have spoken to your doc with regard to why he has chosen this treatment for you. I wonder why he will only refer to Johns Hopkins?, the Rush protocol is basically the same, except that you live in the hospital at Rush, you live near the hospital in Baltimore. Also, as I understand thereis a 3 year wait list at JH. You sound like you don't have that much time Chris.
Chris, I have a mess n my house post Christmas. I don't have the exclusionary data near me with regard to the Rush study. 6.5 might be too far. I will get that data , along with any other I have and PM you.

I wish you the best choice available for you.

Thank you Colleen, I greatly appreciate your help.

Chris, are you still out there?
I'm sorry I didn't get back to you. I am going to Rush for a final eval on tues next week. I suspect they are going to tell me to take a hike. I'm not sure why they are, but they are using 'different' language then they did some months back.

I'll post on tuesday..

This might be it, might not. I'm so sick I have to leave the workplace either way.

My sis has Primary Progressive MS and is currently in the middle of a BAD exacerbation. After a lot of thought, she & her neuro decided to treat with Cytoxan . After a few days in hospital to administer the Cytoxan, she was moved to rehab …and that’s where the fun began.

She’s been having a lot of bizarre psychological issues - paranoia (she is convinced everyone is trying to kill her by replacing the oxygen in her nasal cannula with carbon dioxide), she says there are cameras in her room, the nurses all hate her and won’t help her …the list goes on & on. Her doc thinks this may all be caused by a drug interaction in conjunction with the cytoxan as well as the exacerbation and sleep deprivation (we believe she may also have sleep apnea).

Does anyone have any experience with Cytoxan side effects such as these? Or perhaps experienced/heard of anyone experiencing anything similar while having an exacerbation? Its very stressful for us to see her going through it and we are struggling to understand and cope.

DJBowlin wrote:My sis has Primary Progressive MS and is currently in the middle of a BAD exacerbation. After a lot of thought, she & her neuro decided to treat with Cytoxan . After a few days in hospital to administer the Cytoxan, she was moved to rehab …and that’s where the fun began.

She’s been having a lot of bizarre psychological issues - paranoia (she is convinced everyone is trying to kill her by replacing the oxygen in her nasal cannula with carbon dioxide), she says there are cameras in her room, the nurses all hate her and won’t help her …the list goes on & on. Her doc thinks this may all be caused by a drug interaction in conjunction with the cytoxan as well as the exacerbation and sleep deprivation (we believe she may also have sleep apnea).

Does anyone have any experience with Cytoxan side effects such as these? Or perhaps experienced/heard of anyone experiencing anything similar while having an exacerbation? Its very stressful for us to see her going through it and we are struggling to understand and cope.

I have no personal experience with cytoxan. However, as you may already know, it is a chemotherapy drug. As such, it is associated with changes in cognition that are commonly seen in cancer treatment patients known as chemo brain. Here are some links that discuss chemo brain.

http://www.cancer.org/Treatment/Treatme ... hemo-brain

http://www.nytimes.com/2009/08/04/health/04brod.html

http://www.mayoclinic.com/health/chemo- ... ECTION=all

I hope that these are helpful. I don't know what to recommend other than a brain healthy diet including lots of omega-3 fatty acids such as DHA and antioxidants.


NHE

How does the cytoxin work long term?
Do you take it regularly, or do you take it a couple times and it's done? I'm a real newbie who has been really looking at fund raising for HSCT, and this seems like the same type thing on first glance. I understand immune ablation as a theory, but the stem cell thing seems to make more sense theoretically. I am interested in helping myself get the best outcome, and I'm still in freak out mode.


Thanks for advice guys.

Hello everyone,

I would like to reboot my immune system but I read here that there may be a 3-year waiting list for John Hopkins. I also read that there is the so-called Dr Brodsky protocol which looks the same to me as what they do at John Hopkins and I was wondering if I have higher chances of doing this if I go with Dr Brodsky's protocol? Is that so? What is the difference between the John Hopkin's treatment and Dr Brodsky's protocol? Isn't Dr Brodsky at John Hopkins as well?

Hope someone can explain! Thanks

My wife has SPMS, and our neurologist told us that the only FDA approved treatment for SPMS or PPMS is monthly chemo (either Novantrone or Cytoxan). We decided on Cytoxan, since you can have only a few treatments of Novantrone (I think 10 total in your life, and you are done). She started the chemo in 2007, and took about 18 months of treatment. The oncologist that was adminstering the treatment stopped her after 18 months because (you need to know this!) you can develop leukemia from to long-term exposure to Cytoxian. Anyway, the results were... mixed. There were never any improvements in her physical or cognitive abilities. There was some nausea, a lot of hair loss, and typical post-chemo fatigue. However, she did not develop any new active lesions, and her existing lesions did not expand. I suspect that her T-cells and macrophages were knocked down to a level that prevented further injury to the myelin sheath. Anyway, be aware of the threat of leukemia, and don't expect physical or cognitive improvements. But it MIGHT be useful in stopping progression of the disease. Hope this helps!

..

The other main 'potential' side effects are irreversable heart damage, that will lead to Congestive heart failure, and an infection so brutal you can't recover from it. Now that last one is only for the Hi Dose protocol,because the object of that is to ablate your immune systen so that comes back 'naive' to the fact that it was once your enemy.