Re: Novantrone for MS - please help [OT]

[Guest guest]

Hi Victor

I had been on novantrone for some years,with no major

side effects until now.I have reached the max

limit,set by risk of cardio-toxicity.For me it has

been quite successful.I hadn't any other options left

anyway.

Ever since starting I had no more attack,my steady

decline stopped and I even got some symptom relief

like walking distance improving from 100m with 2 canes

to 1500m without aid.Needless to say my QoL improved

quite a lot.

If it works against pain due to MS,I don't know.

I wouldn't recommend if one still wants to have kids.

Regs,Tom

--- Victor Mohyla <vmohyla@...> wrote:

> Hello everyone,

>

> I need to ask anyone here who has used Novantrone

> or knows anything about it - what their experiences

> or thoughts are. What I have read about it terrifies

> me, as it seems the side effects (potential) are

> much more dangerous than MS itself.

>

> Has anyone used it? What side effects have you

> experienced? Any success? Anyone know any details.

>

> As much as my friend with MS is trying to go the

> LDN and natural route, she seems easily swayed, as

> she is in so much pain and discomfort and simply

> wants relief. That I cannot blame her for, but I'm

> terrified for her, as this product alters one's DNA.

>

> Please help!

>

> Thank you so much in advance.

>

> Victor.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

>

> Hello everyone,

>

> I need to ask anyone here who has used Novantrone or knows

anything about it - what their experiences or thoughts are. What I

have read about it terrifies me, as it seems the side effects

(potential) are much more dangerous than MS itself.

>

> Has anyone used it? What side effects have you experienced? Any

success? Anyone know any details.

>

> As much as my friend with MS is trying to go the LDN and natural

route, she seems easily swayed, as she is in so much pain and

discomfort and simply wants relief. That I cannot blame her for, but

I'm terrified for her, as this product alters one's DNA.

>

> Please help!

>

> Thank you so much in advance.

>

> Victor.

--

I was on Novantrone for five treatments then told my neurologist to

stop. Made me very ill. The long term side-effects are not very

pleasant. Heart failure and leukemia i.e. It also didn't stop the

progression of my MS. Good luck to your friend.

Artie

[Guest guest]

Reg, Tom Im going to start Novantrone next month, now that you are finished with your treatments of Novantrone!! I wonder what are you taking now? Are you taking LDN?Thanks in advance for any information you can give!! tf <luxtf@...> wrote: Hi VictorI had been on novantrone for some years,with no majorside effects until now.I have reached the maxlimit,set by risk of cardio-toxicity.For me it hasbeen quite successful.I hadn't any other options leftanyway.Ever since starting I had no more attack,my steadydecline stopped and I even got some symptom relieflike walking distance improving from 100m with 2 canesto 1500m without aid.Needless to say my QoL improvedquite a lot.If it works against pain due to MS,I

don't know.I wouldn't recommend if one still wants to have kids.Regs,Tom--- Victor Mohyla <vmohyla@...> wrote:> Hello everyone,> > I need to ask anyone here who has used Novantrone> or knows anything about it - what their experiences> or thoughts are. What I have read about it terrifies> me, as it seems the side effects (potential) are> much more dangerous than MS itself.> > Has anyone used it? What side effects have you> experienced? Any success? Anyone know any details.> > As much as my friend with MS is trying to go the> LDN and natural route, she seems easily swayed, as> she is in so much pain and discomfort and simply> wants relief. That I cannot blame her for, but I'm> terrified for her, as this product alters one's

DNA.> > Please help!> > Thank you so much in advance.> > Victor.> > > > > > __________________________________________________>

[Guest guest]

Hi

Hmm,I also do wonder about what will come next.Will

have a doc visit in jan.Somewhat I hope Tysabri or

something else becomes available,as I wouldn't like

too much to go back on CRAB's.

That's been one of the reasons to try LDN;I'm afraid

this is not for me cause of spasticity,intestinal pain

etc.I felt a lot better after I had stopprd taking

it,though it had been 1.5 mg only.

Regs,Tom

--- Sims <vjsims63066@...> wrote:

> Reg, Tom

>

> Im going to start Novantrone next month, now that

> you are finished with your treatments of

> Novantrone!! I wonder what are you taking now? Are

> you taking LDN?Thanks in advance for any information

> you can give!!

>

>

>

__________________________________________________

[Guest guest]

I decided after I read the information my gyn doctor gave me today im thinking of trying that med he said he already have 1 patient with MS on it and she is doing great..she has little to no tingling feeling left... tf <luxtf@...> wrote: Hi Hmm,I also do wonder about what will come next.Willhave a doc visit in jan.Somewhat I hope Tysabri orsomething else becomes available,as I wouldn't liketoo much to go back on CRAB's.That's been one of the reasons to try LDN;I'm afraidthis is not for me cause of spasticity,intestinal painetc.I felt a lot better after I had stopprd takingit,though it had been 1.5 mg only.Regs,Tom--- Sims <vjsims63066@...> wrote:> Reg, Tom>

> Im going to start Novantrone next month, now that> you are finished with your treatments of> Novantrone!! I wonder what are you taking now? Are> you taking LDN?Thanks in advance for any information> you can give!!> > > __________________________________________________

[Guest guest]

I decided after I read the information my gyn doctor gave me today im thinking of trying that med he said he already have 1 patient with MS on it and she is doing great..she has little to no tingling feeling left... tf <luxtf@...> wrote: Hi Hmm,I also do wonder about what will come next.Willhave a doc visit in jan.Somewhat I hope Tysabri orsomething else becomes available,as I wouldn't liketoo much to go back on CRAB's.That's been one of the reasons to try LDN;I'm afraidthis is not for me cause of spasticity,intestinal painetc.I felt a lot better after I had stopprd takingit,though it had been 1.5 mg only.Regs,Tom--- Sims <vjsims63066@...> wrote:> Reg, Tom>

> Im going to start Novantrone next month, now that> you are finished with your treatments of> Novantrone!! I wonder what are you taking now? Are> you taking LDN?Thanks in advance for any information> you can give!!> > > __________________________________________________

[Guest guest]

hi

if you just talk about tingling,ok I wouldn't go for

chemo probably

cu,tom

--- Sims <vjsims63066@...> wrote:

> I decided after I read the information my gyn doctor

> gave me today im thinking of trying that med he said

> he already have 1 patient with MS on it and she is

> doing great..she has little to no tingling feeling

> left...

>

>

>

__________________________________________________

[Guest guest]

I have taken Novatrone for a total of four doses. The MD had to lower my dose each time I took it. It's effect on my WBC's was awful as well as my RBCs. My expectations were that I would feel better. First, I had my IV infiltrate which causes the skin to slough off. I was lucky and saw it happen and only have a blue area on my hand. Secondly, the medication for nausea worked for about four hours and then I would have to take Zofran. I was fortunate that in the evening and morning my sister-in-law was also a nurse and gave me some IV Zofran at home. I had to stay away from people due to my neutrophil count going so low. My RBC also would go down so far that I would be short of breath for the first six weeks. Then I would have 6 weeks to work at building up my strength and RBC count. It would classify that year as useless. I finally said no more and was scheduled to start Tysabri when it went off the market. Novatrone only kept new lesions from forming in my brain and spine, yet I felt rotten for a year. I went back of Betaseron and said no more CRABS and started on LDN this past October. I have energy for the first time in a long time. Ask me if you want more details.

Kerry

Kerry

[Guest guest]

Thank you SO much for letting me know your story. Victor. Arnott kerry <kerrynew@...> wrote: I have taken Novatrone for a total of four doses. The MD had to lower my dose each time I took it. It's effect on my WBC's was awful as well as my RBCs. My expectations were that I would feel better. First, I had my IV infiltrate which causes the skin to slough off. I was lucky and saw it happen and only have a blue area on my hand. Secondly, the medication for nausea worked for about four hours and then I would have to take Zofran. I was fortunate that in the evening and morning my sister-in-law was also a nurse and gave me some IV Zofran at home. I had to stay away from people due to my neutrophil count going so low. My RBC also would go down so far that I would be

short of breath for the first six weeks. Then I would have 6 weeks to work at building up my strength and RBC count. It would classify that year as useless. I finally said no more and was scheduled to start Tysabri when it went off the market. Novatrone only kept new lesions from forming in my brain and spine, yet I felt rotten for a year. I went back of Betaseron and said no more CRABS and started on LDN this past October. I have energy for the first time in a long time. Ask me if you want more details. Kerry Kerry

Find Great Deals on Holiday Gifts at

[Guest guest]

Thank you Kerry for all that good information...I guess the Novantrone isn't good for everyone...from what I have heard about it...I don't think I'm going to do the chemo, cause I don't want to feel sick as soon as I get in to talk to my Gyn doctor I'm going to go the other way that he was telling me about..he has one of his patient on it... Arnott kerry <kerrynew@...> wrote: I have taken Novatrone for a total of four doses. The MD had to lower my dose each time I took it. It's effect on my WBC's was awful as well as my RBCs. My expectations were that I would feel better. First, I had my IV infiltrate which causes the skin to slough off. I was lucky and saw it happen and only have a blue area on my hand. Secondly, the medication for nausea worked for about four hours and

then I would have to take Zofran. I was fortunate that in the evening and morning my sister-in-law was also a nurse and gave me some IV Zofran at home. I had to stay away from people due to my neutrophil count going so low. My RBC also would go down so far that I would be short of breath for the first six weeks. Then I would have 6 weeks to work at building up my strength and RBC count. It would classify that year as useless. I finally said no more and was scheduled to start Tysabri when it went off the market. Novatrone only kept new lesions from forming in my brain and spine, yet I felt rotten for a year. I went back of Betaseron and said no more CRABS and started on LDN this past October. I have energy for the first time in a long time. Ask me if you want more details. Kerry Kerry

Find Great Deals on Holiday Gifts at

[Guest guest]

If only I had known about LDN before I did a year of Novantrone.

My side effects:

All the veins useful for blood draws/IV in my arms are GONE, scarred

by the chemo.

Heart function went down 10 points, which is the cut off point for

Novantrone, but I was happy to go off it anyway.

N made me feel like #@$%! and did no good for the MS. 10 months

after getting off N MS was still getting worse, and I was being

measured for motorized wheelchair. I found LDN Feb 2004 and have

done nothing but recover since, no more cane, and I cancelled that

wheelchair.

Went back the the neuro who prescibed N, she said my recovery could

not be attributed to a delayed effect from N, if it is going to

work, it works right away. But she told me after N you are on the

heart disfunction and leukemia watch list for 5 years, so there are

long term risks too.

But I was happy to learn she had been prescribing LDN to those who

ask for it, and I've been getting reports from all over Seattle that

neuros are prescribing and even recommending LDN, so maybe the grass

roots approach is working.

The surveys I did of others taking LDN are at http://LDNers.org

SammyJo

>

> Hello everyone,

>

> I need to ask anyone here who has used Novantrone or knows

anything about it - what their experiences or thoughts are. What I

have read about it terrifies me, as it seems the side effects

(potential) are much more dangerous than MS itself.

>

> Has anyone used it? What side effects have you experienced?

Any success? Anyone know any details.

>

> As much as my friend with MS is trying to go the LDN and natural

route, she seems easily swayed, as she is in so much pain and

discomfort and simply wants relief. That I cannot blame her for,

but I'm terrified for her, as this product alters one's DNA.

>

> Please help!

>

> Thank you so much in advance.

>

> Victor.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Keep in mind that it not only makes you sick, but has killed people (heart failure), has caused leukemia in people, and many other things, but it also causes (not side effect possibility, but actually does this to everyone) IRREVERSABLE HEART DAMAGE and IRREVERSABLE blood vessel damage! Oh, and did I mention that is ALTERS YOUR DNA - BY DESIGN!!! Victor. Sims <vjsims63066@...> wrote: Thank you Kerry for all that good information...I guess the Novantrone isn't good for everyone...from what I have heard about it...I don't think I'm going to do the chemo, cause I don't want to feel sick as soon as I get in to talk to my Gyn doctor I'm going to go the other way that he was telling me about..he has

one of his patient on it... Arnott kerry <kerrynew@...> wrote: I have taken Novatrone for a total of four doses. The MD had to lower my dose each time I took it. It's effect on my WBC's was awful as well as my RBCs. My expectations were that I would feel better. First, I had my IV infiltrate which causes the skin to slough off. I was lucky and saw it happen and only have a blue area on my hand. Secondly, the medication for nausea worked for about four hours and then I would have to take Zofran. I was fortunate that in the evening and morning my sister-in-law was also a nurse and gave me some IV Zofran at home. I had to stay away from people due to my neutrophil count going so low. My RBC also would go down so far that I would be short of breath for the first six weeks. Then I would

have 6 weeks to work at building up my strength and RBC count. It would classify that year as useless. I finally said no more and was scheduled to start Tysabri when it went off the market. Novatrone only kept new lesions from forming in my brain and spine, yet I felt rotten for a year. I went back of Betaseron and said no more CRABS and started on LDN this past October. I have energy for the first time in a long time. Ask me if you want more details. Kerry Kerry Find Great Deals on Holiday Gifts at

Find Great Deals on Holiday Gifts at

[Guest guest]

I want to thank everyone who committed on the Novantrone...I think I have got enough information that you guys have tu rned my head off of wanting to take the Novantrone...I'm going to stick with LDN for the time being....and do the glycos and see how that works... Victor Mohyla <vmohyla@...> wrote: Keep in mind that it not only makes you sick, but has killed people (heart failure), has caused leukemia in people, and many other things, but it also causes (not side effect possibility, but actually does this to everyone) IRREVERSABLE HEART DAMAGE and IRREVERSABLE blood vessel damage! Oh, and did I mention that is ALTERS YOUR DNA - BY DESIGN!!! Victor. Sims <vjsims63066@...> wrote: Thank you Kerry for all that good information...I guess the Novantrone isn't good for everyone...from what I have heard about it...I don't think I'm going to do the chemo, cause I don't want to feel sick as soon as I get in to talk to my Gyn doctor I'm going to go the other way that he was telling me about..he has one of his patient on it... Arnott kerry <kerrynew@...> wrote: I have taken Novatrone for a total of four doses. The MD had to lower my dose each time I took it. It's effect on my WBC's was awful as well as my RBCs. My expectations were that I would feel better. First, I had my IV

infiltrate which causes the skin to slough off. I was lucky and saw it happen and only have a blue area on my hand. Secondly, the medication for nausea worked for about four hours and then I would have to take Zofran. I was fortunate that in the evening and morning my sister-in-law was also a nurse and gave me some IV Zofran at home. I had to stay away from people due to my neutrophil count going so low. My RBC also would go down so far that I would be short of breath for the first six weeks. Then I would have 6 weeks to work at building up my strength and RBC count. It would classify that year as useless. I finally said no more and was scheduled to start Tysabri when it went off the market. Novatrone only kept new lesions from forming in my brain and spine, yet I felt rotten for a year. I went back of Betaseron and said no more CRABS and started on LDN this past October. I have energy for the first time in a long time. Ask me if you want more details. Kerry Kerry Find Great Deals on Holiday Gifts at Find Great Deals on Holiday Gifts at

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