Why No Posts on Novantrone?

[seelie]

There seems to be a lot of discussion about Avonex, Rebif .... and of course LDN... but I don't see much about Novantrone.

I am considering using it ... and was wondering about some folks experiences with it. I've spent some time in 'the newsgroups' looking up some post from folks... and can get some info there.

I noticed on one of the surveys "What Therapy are you using" we had about 30 folks saying they are using Novantrone... Where are you...

My other concern... is... since there are some health risks assoc w/Novantrone... Dead Guys don't post????
-G

[HarryZ]

I just read your original message on Novantrone.

This drug was originally used to treat cancer and is quite potent. Somewhere along the line, because of its immune system altering capabilities, docs tried it on some MS patients and ended up with with reducing the number of exacerbations that patients suffered. From what I know, it doesn't do anything to treat MS symptoms.

I would suggest you go to this site http://www.nlm.nih.gov/medlineplus/druginformation.html

and read about Novantrone. Medline Plus is probably one of the best sites to read about any drug. It is totally unbiased.

Novantrone can cause heart problems so a great deal of caution is required when using it to treat MS.

Harry

[vk]

I JUST READ YOUR POST ABOUT NOVANTRONE AND I AM CURIOUS, DID A NEURO SUGGEST IT? IT IS USUALLY THE LAST RESORT FOR AGGRESSIVE SPMS. NOVANTRONE IS NOT A CURE-ALL, IT STABILIZES, OR SO THEY SAY. I AM ON MY SECOND YEAR AND THE DRS. ARE SATISFIED THAT I HAVEN'T DECLINED ANY FURTHER. YOU PROBABLY DON'T READ TOO MUCH FROM NOVANTONE PATIENTS, BECAUSE, NOVANTRONE LEAVES YOU SICK MOST OF THE TIME. FOR MORE PEOPLE ON NOVANTRONE, CHECK www.ms-cam.org I HAVE CORRESPONDED WITH QUITE A FEW PEOPLE THERE. STAY WELL, VIKKI

[Hsan]

My 19 year old daughter just had her 3rd treatment of novantrone this afternoon. She had her 1st 2 treatments in 2002 and then went on betaseron. She just started having flare ups April, June, Jul 2004. She tried the IV steroids (2 3day infusions April & June) and those didn't seem to work. Decided to use novantrone again because we had miracle like results in 2002. Went from being in a wheelchair to walking without assistance in a couple of days. The disease is very aggressive for a 19 year old so our neuro is aggressive with treatment. We spent 26 days in the hospital in 2002. Side effects....she didn't experience any really bad side effects, just the usual nausea. Hoping this time around we get the same results.

[seelie]

Hi VK, Harry, HSan... thanks for the feedback/info....

Yes... my Neuro did ask me to consider Novantrone. I think they have me now as one of those Worsening Relapsing Remitting types or whatever they are calling it this year.....

I've asked to see another neuro at Bowman Gray School of Medicine for a second opinion... he's considered the MS expert here in the Piedmont of North Carolina.... From talking to some of his patients he's a Novantrone and BetaSeron kind of guy who also gives IVIG and maintenance doses of solu-medrol a couple of times a year... just in case.... fairly aggressive....

I went from walking to not walking in a few weeks (I have thankfully gotten some remission but am waaaay below my previous baseline) ... so my usually conservative neuro said... I think you might wish to consider Novantrone. I asked her ... well, what has your experience been with other folks to whom you have given Novantrone? She said, Oh - You would be my first.

Can you say RED FLAG? Hence the request for a second opinion.

Obviously I know Novantone is chemo and not a cure... (but neither is anything else out there) and results seem to be all over the map. I see stories like Hsan's daughter who went from not walking to walking and have heard of other folks telling similar great stories...

My friend here in town said she hasn't noticed much difference, she hasn't gotten any better but she hasn't gotten any worse... right now she's kinda like me, we kind of walk doofie, but we both work and get along OK....

I've read about folks who quit Novantrone because of the side effects (same stories as I've seen about the CRABS)....

It's also from what I've seen like everything else - good for a couple of years (in the clinical trials)... only Copaxone is claiming 10 years right now, I believe...

As far as the possible cardiotoxicity of Novantrone --- what can I say about that... have you bothered to read the warnings on toothpaste and Tylenol lately? You'd never take those either if you thought all that could happen to you....

I'm still taking Avonex and sitting on the fence for now. I'm going for that second opinion later this month (July 2004) It sometimes seems the more I learn.... the more confused I get....

I've been to the point of saying - Yup - Novantrone is it, that's the way I'm going... only to find within 30 minutes a horror post ... and saying, nope it doesn't sound worth all the agony....

I recently found an article saying that Copaxonone was the greatest MS treatment ever... and yet another saying some doctors in Italy had declared it useless and were never prescribing it again to any of their patients... I think both are linked from this site somehow or another....

That's why I was hoping to hear a little more here...

I guess I've just gotta make up my mind and not look back, though I spent a lot of time in my wheelchair asking myself why I stayed on Avonex for so long without trying anything else....

I wish you all the best and thank you for helping to wake up this (largely ignored) section of the message board.... maybe we can get some other folks in here who have tried it.... or are knowledgable.

Befuddled in NC
=Greg

[Guest]

I JUST HAD A TREATMENT, YESTERDAY AND WE ASKED THE ONCOLOGIST WHAT HAPPENS AFTER. HE SAID IT IS STILL TOO NEW AND THEY DON'T KNOW HOW LONG THE EFFECTS WILL LAST. ONCE YOU STOP, THE MS COULD FLARE UP. WE WENT THIS WAY BECAUSE MY ONCOLOGIST IS A LEADING RESEARCHER IN STEM-CELL AND HAS HAD GREAT SUCCESS, BUT, TO QUALIFY, YOU HAVE TO TRY THE MAIN-STREAM DRUGS FIRST. THE BEST WE CAN HOPE FOR IS THAT THE NEW DRUGS COMING (ANTEGREN) WILL BE AS HOPED FOR. YOU ARE STILL WORKING AND WALKING, SO, GET A SECOND AND THIRD OPINION. CHECK THE OTHER WEB-SITES, SEARCH FOR NOVANTRONE, IT SHORTENS THE SEARCH, CONSIDERABLY. TALK TO OTHER PEOPLE, KNOWLEDGE IS POWER, STAY WELL, VIKKI

[k8jsl]

Well after my normal 6month checkup w/ Neuro she suggested I go on Novantrone as well.... She said she doesnt like the results she is seeing w/REBIF and wants to give Rebif a "helping hand" as the MS has progressed 10 times faster then she would have liked to seen... Not quite what I wanted to hear.

Oh well... I get my first visit after the Oncolygist (sp??) reviews my newest MRI w/ my Neuro...

[seelie]

I found this interesting... Doc just put me on Amantadine which they seem to hand out like candy to MSers....

Possible Side Effects: Feeling uncoordinated; Nausea; Decreased sexual desire; High blood pressure; skin inflammation; congestive heart failure; skin rash....

Makes me wonder why Patients and Docs are so averse to using this therapy when they seem to have no problem w/ Amantadine. The side effects seem so similar...