SECONDARY PROGRESSIVE MS & NOVANTRONE

[mgroz53]

hI, ALL! I AM LOOKING FOR FEEDBACK FROM SECONDARY PROGRESSIVE MS PATIENTS WHO ARE ON NOVANTRONE, THEIR SIDE EFFECTS, ETC. THIS IS THE ONLY TREATMENT LEFT FOR ME AND I HATE THE IDEA OF CHEMO. PLEASE LET ME KNOW ANYTHING OF YOUR EXPERIENCES WITH NOVANTRONE. THANKS.

[ijustcallit]

Why not try cytoxin first? Less side effects says my doc. No heart checks either.

[davmets1]

I TOOK NOVANTRONE QUITE A FEW YEARS AGO. I DID THE TREATMENT ABOUT 6 TIMES. I FELT POSITIVE IMPROVEMENTS WITH IT, BUT ALSO REMEMBER FEELING A LITTLE DRAGGED OUT FROM IT.

I DECIDED TO QUIT IT BEFORE GOING THE MAXIMUM AMOUNT OF TREATMENTS. THE SIDE EFFECT OF POSSIBLE HEART PROBLEMS DOWN THE LINE IS SOMETHING YOU SHOULD CONSIDER BEFORE DECIDING TO TAKE IT. IT SOUNDS LIKE YOUR OPTIONS ARE RUNNING OUT, SO I'M SURE IT WILL BE A TOUGH DECISION FOR YOU.

THE OTHER NEGATIVE ABOUT THIS DRUG IS THAT YOU CAN ONLY TAKE IT A CERTAIN NUMBER OF TIMES, SO YOU'LL BE BACK IN A YEAR TRYING TO FIGURE OUT WHAT DRUG YOU'RE GONNA TAKE NEXT. THAT'S WHAT I WAS TRYING TO DO, BRIDGE THE GAP TO THE NEXT LATEST AND GREATEST DRUG.

GOOD LUCK ON YOUR DECISION.

[Agent86]

Hi mgroz53 ... I took Novantrone 4 times over a 2 year period --interrupted for surgery for a Baclofen pump. My experience taking the infusions was pretty mild. Some nausea, much less now with ondantsetron, some hair loss. Novantrone had the desired therapeutic effect: stability after steadily worsening. Took just over 1/2 of the max recommended dose. Can take more, if desired. You'll need a measure of LV function (how strong your heart is) before every dose: cardiotoxicity is a potential side effect. Another, rare side effect is leukemia. My neurologist went over both the toxicities and comparative studies showing statistical improvement using Novantrone in patients with SP MS.
The rate I was getting worse made Novantrone an easy decision for me.

Good luck! 86

[skreynolds57]

I'm SPMS, have been only progressing for over15 years. I was offered a chance to take Novantrone several years ago but decided not to. I have a question. How does Novantrone stop nerves from degenerating? Does it repair damaged nerves? If it stops attacks (inflammation) then it sounds more like it could be treating a variety of MS that can be called progressive relapsing and by stopping or suppressing an attack, improve function.

I don't have attacks, anti-inflammatory treatments don't help me. I am inclined to feel SPMS is too broad a type and that some are just progressing (Neuro degeneration) and some are also still having inflammatory attacks while progressing without remissions.

Just curious

[Rebecca Darlene]

B/F ON NOVATRONE

HI, HOPE U DON'T MIND MY INPUT BEING MY B/F IS THE ONE WITH SPMS. HE WAS ON BETASERON SHOTS EVERY OTHER DAY, AND STEADILY GETTING WEAKER. HIS DOCTOR RECOMMENDED NOVATRONE, AS A LAST ALTERNATIVE. AFTER SEVERAL MONTHS OF INVESTIGATING THIS TREATMENT, TAKING ALL NECESSARY TEST, HE HAD HIS FIRST INFUSION IN MARCH. THERE HAS BEEN NO NOTICEABLE SIDE AFFECTS, BUT IT IS EARLY YET. HIS DOCTOR DID TELL HIM THAT HE COULD ONLY HAVE AN INFUSION AFTER AN EKG, AND ONLY ONE EVERY THREE MONTHS, FOR A TOTAL OF 12 INFUSIONS,THUS AFTER 3 YEARS IF HE TAKES THEM ALL, WHAT WOULD BE HIS NEXT COURSE OF TREATMENT?
GOOD LUCK, AND GOD BLESS. THIS IS A HARD DECISION TO MAKE.

[mgroz53]

HARD DECISION

IT IS A HARD DECISION FOR ME AND SOUNDS LIKE YOU GUYS WHO TRIED IT STRUGGLED, TOO. I JUST DON'T LIKE THE POSSIBLE SIDE EFFECTS AS WELL AS EFFECTS YOU MAY HAVE LATER ON FROM NOVANTRONE TREATMENT. AT THIS TIME, THERE IS NO OTHER DRUG THAT I AM AWARE OF THAT WOULD BE AN OPTION AFTER NOVANTRONE.

[soccer3]

I am in the same dilemma. My neuro is sending me to an MS specialist to decide which chemo drug to use. He was talking either Cytoxin or Methotrexate. He said he really didn't want me to do Novantrone because of the heart issues. So we'll see what the Specialist has to say.

[Marlie]

NOVANTRONE

I HAD TWO TREATMENTS AND HAD TO BE TAKEN OFF BECAUSE MY EJECTION FRACTURE DROPPED TOO MUCH AFTER JUST 2 TREATMENTS. MY MS DOC HAS SUGGESTED CYTOXIN, BUT I JUST CAN'T GET PAST THE FACT THAT IT IS ANOTHER CHEMO AND THE NAME - EMPHASIS ON THE "TOXIN" HAS ANYONE TRIED THIS AND DID IT HELP? I AM GETTING PRETTY DESPERATE AS I AM PRETTY MUCH BED BOUND AND HAVE TO HAVE HOME HELP DURING THE DAY......

[Lizzyk]

Secondary Progressive Novantrone Feedback

I saw my MS specialist neurologist this week. She took me off of Tysabri. I had asked her for it initially, but had a complication with it.
When I asked her if I should try one of the chemotherapy drugs next, she said that if it were her she would take Copaxone because of the low side effects and high efficacy. Of course, she left the ultimate decision up to me. I hope this helps.
LizzyK