Re: way off topic Novantrone

[Guest guest]

hi,

No one in my MS support group could help me with this so I came here. My Doctor wants me to start the chemo drug novantrone, to hault the progression. besides being totally freaked out I cannot find anyone who has done this evil drug. I am wondering if most just reject this? It does make the ABCs look like a cake walk. It will be 3 months before all the tests are complete to make sure my body is strong enough to handle it. Funny they call this process determing If I am a "canadate" I call it making sure I won't die on them. In the meantime I am to start copaxone, another RRMS drug while I have progressive MS Ever think these Docs are just guessing at everything? I don't know what to do, but I find myself very upset.

Peace,

ZilNever give up, never surrender

Zillba@...

[Guest guest]

Zil,

DON'T DO IT!

The doc's are experimenting.

I know that I am not supposed to do this but I have to be me. Ask God to help you with this, even if you are not sure if He hears you. He does hear you and He will answer you. He will also give you peace with your decision. Ask and He will answer.

Regards,

Tom

----- Original Message -----

From: zillba@...

low dose naltrexone

Sent: Wednesday, July 28, 2004 9:04 AM

Subject: Re: [low dose naltrexone] way off topic Novantrone

hi,

No one in my MS support group could help me with this so I came here. My Doctor wants me to start the chemo drug novantrone, to hault the progression. besides being totally freaked out I cannot find anyone who has done this evil drug. I am wondering if most just reject this? It does make the ABCs look like a cake walk. It will be 3 months before all the tests are complete to make sure my body is strong enough to handle it. Funny they call this process determing If I am a "canadate" I call it making sure I won't die on them. In the meantime I am to start copaxone, another RRMS drug while I have progressive MS Ever think these Docs are just guessing at everything? I don't know what to do, but I find myself very upset.

Peace,

ZilNever give up, never surrender

Zillba@...

[Guest guest]

Zil, I'm with Tom. I don't know that God is the answer to your MS issues, but the doctors and their toxic meds sure aren't! Your spiritual beliefs will give you peace, which will help your body's battle tremendously. (Remember the stress connection) Diet and reasonable supplements will do more for you than the all the chemicals the doctors want to try on you.

----- Original Message -----

From: Bayuk

low dose naltrexone

Sent: Wednesday, July 28, 2004 6:43 AM

Subject: Re: [low dose naltrexone] way off topic Novantrone

Zil,

DON'T DO IT!

The doc's are experimenting.

I know that I am not supposed to do this but I have to be me. Ask God to help you with this, even if you are not sure if He hears you. He does hear you and He will answer you. He will also give you peace with your decision. Ask and He will answer.

Regards,

Tom

----- Original Message -----

From: zillba@...

low dose naltrexone

Sent: Wednesday, July 28, 2004 9:04 AM

Subject: Re: [low dose naltrexone] way off topic Novantrone

hi,

No one in my MS support group could help me with this so I came here. My Doctor wants me to start the chemo drug novantrone, to hault the progression. besides being totally freaked out I cannot find anyone who has done this evil drug. I am wondering if most just reject this? It does make the ABCs look like a cake walk. It will be 3 months before all the tests are complete to make sure my body is strong enough to handle it. Funny they call this process determing If I am a "canadate" I call it making sure I won't die on them. In the meantime I am to start copaxone, another RRMS drug while I have progressive MS Ever think these Docs are just guessing at everything? I don't know what to do, but I find myself very upset.

Peace,

ZilNever give up, never surrender

Zillba@...

[Guest guest]

Hi Zil,

I wouldn't touch chemo either if I were you. Chemo has so many side

effects and it will lower your system so much it will leave you

susceptible to lots of viruses and infections and whatever else is

going around.

How has LDN been working for you? Do you feel you are progressing

since you started it?? Have you not got any benefits from LDN at all

taht you'd consider such radical treatment?? Chemo will probably undo

any good LDN hs done for you aswell as being highly toxic to your

body.

Please look into this before giving into your doctor requests. I have

yet to hear of someone on chemo with MS who has done well.

how is your diet, lifestyle and stress in your life?? I would take

care of all these and much more before ever considering putting such

toxins in my body.

Rep. Ireland

[Guest guest]

I tried the novantrone. First dose was fine, however second dose hit me down really bad. The doctor said it was a low dose so I wouldn't have hair loss and it shouldn't make me sick. Wrong, I was in bed nearly 3 weeks after the second dose which was given last August and my hair came out in clumps. I have hair down to my waist, so when it started coming out I knew it. My body still has not recovered. I had a stroke in March, so I'm really down right now. If I were you I'd stay away from chemo if at all possible. At the present time I'm looking for a new doctor. One that cares about the patient and not pushing drugs. Since, after reaching on my own and finding out that my stroke was caused by hormones, I'm not real crazy about the medical "experts" right now. When I called my neurologists because my left side was paralyzed, she had her nurse call steroids into the drug store for me. She never took the time to visit with me at all. Later I found out her nurse never told her I was having numbness and tingling on my left side. I wasn't, I was totally paralyzed on my left side!!!!! So, be careful. This doctor is very well thought of as a specialist in MS. That's why I started seeing her. Sine all this, I have started to believe a doctor is only as good as the staff they surround themselves with. Especially when they don't take the time to check on their patients themselves. Sorry for the lecture, but I am still trying to learn to walk again, use my hand, and not be bitter. Two days before the stroke I was working young colts even though I have MS. Now I spend most of my time in bed looking out the window at my horses. If you haven't tried LDN, I highly recommend it. I've only been on it 8 days and can already see a difference in fatigue and mood. My husband can as well. Best of luck to you.

----- Original Message -----

From: zillba@...

low dose naltrexone

Sent: Wednesday, July 28, 2004 8:04 AM

Subject: Re: [low dose naltrexone] way off topic Novantrone

hi,

No one in my MS support group could help me with this so I came here. My Doctor wants me to start the chemo drug novantrone, to hault the progression. besides being totally freaked out I cannot find anyone who has done this evil drug. I am wondering if most just reject this? It does make the ABCs look like a cake walk. It will be 3 months before all the tests are complete to make sure my body is strong enough to handle it. Funny they call this process determing If I am a "canadate" I call it making sure I won't die on them. In the meantime I am to start copaxone, another RRMS drug while I have progressive MS Ever think these Docs are just guessing at everything? I don't know what to do, but I find myself very upset.

Peace,

ZilNever give up, never surrender

Zillba@...

[Guest guest]

novantrone

Zil,

I took novantrone 5 times...every three months.I missed one 3 months chemo,because my white blood count was too low!

How did I do? Well..it wiped me out ! I got really sick the first time...so I had some anti nuasea pills "zofran" specifically. Helped me big time.

Bowel was messed up...

I worked very part time (12 hours/week) yet I did not work.

Ate the "BRAT" diet....bananas,rice,apple sause ,toast....

After 5 times,I askeed my nuero if I had to continue...the response was "no".

I had decided I would not anyway...wiped my immune system out.

I have SPMS . Some people do ok with this treatment,according to Novantrone "anadotes" !

So much for LDN anadotes...which seemingly are not heard !

I asked my neuro to perscribe LDN.. Had not heard of it...I

One valid point...did not want to prescibe it,because neuro wants to start me on Antegren..when it comes out..and not knowing LDN,she certainly did not know how drugs would work or not work together !

am doing paperwork for Dr, to receive a script, in the meantime.

I do not think I alleviated your being upset.

If you have a caregiver..that is a big help.

Me...a single guy.....a lone journey...

Peace to you too,Zil...

Jon.

My experience....hopefully different than yours...----- Original Message -----

From: zillba@...

low dose naltrexone

Sent: Wednesday, July 28, 2004 9:04 AM

Subject: Re: [low dose naltrexone] way off topic Novantrone

hi,

No one in my MS support group could help me with this so I came here. My Doctor wants me to start the chemo drug novantrone, to hault the progression. besides being totally freaked out I cannot find anyone who has done this evil drug. I am wondering if most just reject this? It does make the ABCs look like a cake walk. It will be 3 months before all the tests are complete to make sure my body is strong enough to handle it. Funny they call this process determing If I am a "canadate" I call it making sure I won't die on them. In the meantime I am to start copaxone, another RRMS drug while I have progressive MS Ever think these Docs are just guessing at everything? I don't know what to do, but I find myself very upset.

Peace,

ZilNever give up, never surrender

Zillba@...

[Guest guest]

the docs ARE guessing at everything, in the 15 years i have lived with it i have read a myriad of opinions regarding the treatment and the prognosis of this disease.

i have never taken novantrone, but i know it is a powerful chemo drug with associated side effects...

-------------- Original message --------------

hi,

No one in my MS support group could help me with this so I came here. My Doctor wants me to start the chemo drug novantrone, to hault the progression. besides being totally freaked out I cannot find anyone who has done this evil drug. I am wondering if most just reject this? It does make the ABCs look like a cake walk. It will be 3 months before all the tests are complete to make sure my body is strong enough to handle it. Funny they call this process determing If I am a "canadate" I call it making sure I won't die on them. In the meantime I am to start copaxone, another RRMS drug while I have progressive MS Ever think these Docs are just guessing at everything? I don't know what to do, but I find myself very upset.

Peace,

ZilNever give up, never surrender

Zillba@...

[Guest guest]

I wish I'd found LDN before they talked me into Novantrone. I didnt

make the two year dose program, after 1 year it had whacked my LVEF

heart function down 10 points, so I had to go off. But that was fine

with me, as MS was only getting worse. A year after N I was still

getting worse, now with heart palpitations, even approved for a

wheelchair. Then I found LDN, and 6 weeks later wasn't even using my

cane anymore. 6 months after starting LDN I am pumping 80 lbs on the

weight machine and outside in hot weather. N has helped some cases

I've read about, and some don't have bad reactions, but this is a

hard drug, it kills your immune cells, and a good chunk of the rest

of your body, so I'd say only go there as a last resort!

SammyJo

[Guest guest]

i actually had thoughts about novantrone about 5 years ago, then read about the ef problems, so i said thanks, no thanks, and found a neuro close to my office...then my husband's ex (go figure) told me about this compounding pharmacy...that was the first time i had ever heard of ldn. i have taken a grand total of 4 doses...is this more than snake oil??

-------------- Original message -------------- > I wish I'd found LDN before they talked me into Novantrone. I didnt > make the two year dose program, after 1 year it had whacked my LVEF > heart function down 10 points, so I had to go off. But that was fine > with me, as MS was only getting worse. A year after N I was still > getting worse, now with heart palpitations, even approved for a > wheelchair. Then I found LDN, and 6 weeks later wasn't even using my > cane anymore. 6 months after starting LDN I am pumping 80 lbs on the > weight machine and outside in hot weather. N has helped some cases > I've read about, and some don't have bad reactions, but this is a > hard drug, it kills your immune cells, and a good chunk of the rest > of your body, so I'd say only go there as a last resort! > SammyJo > > > >

[Guest guest]

Zil,

If they take three months testing to see if your body is strong enough it seems to me that this must be a devastating treatment to put your body through. It kind of reminds me of the radiation therapy used on my mother's lung cancer. They killed the cancer, but they also killed the patient. Of course they showed her death as caused by pneumonia since it occurred after her radiation therapy ended. Six days after...

Protect yourself; some of our doctors are not really working in your best interests. They can use your fear to railroad you into things you would not consider if you could take the time to calm down and really review the options.

I care; I don't want bad things to happen to you...

----- Original Message -----

From: zillba@...

low dose naltrexone

Sent: Wednesday, July 28, 2004 6:04 AM

Subject: Re: [low dose naltrexone] way off topic Novantrone

hi,

No one in my MS support group could help me with this so I came here. My Doctor wants me to start the chemo drug novantrone, to hault the progression. besides being totally freaked out I cannot find anyone who has done this evil drug. I am wondering if most just reject this? It does make the ABCs look like a cake walk. It will be 3 months before all the tests are complete to make sure my body is strong enough to handle it. Funny they call this process determing If I am a "canadate" I call it making sure I won't die on them. In the meantime I am to start copaxone, another RRMS drug while I have progressive MS Ever think these Docs are just guessing at everything? I don't know what to do, but I find myself very upset.

Peace,

ZilNever give up, never surrender

Zillba@...

[Guest guest]

Zil

My doctor said well we can offer another treatment (novantrone), but you will most likely have worse side effects than anything you've experienced thus far.

I immediateately said no thanks. Like JT, I saw what chemo and radiation did to my mother.

If you are asking for votes, mine is NO.

Arlene