Rituxan

[Guest guest]

,I will be praying that this medication gives you all the relief you so need and deserve, with no side effects. Hugs,nancy & amanda snooksmama@... wrote: It looks like my first infusion will be Tuesday. Its scary, but I am having so much trouble the last few days, and I'm tired of living on prednisone. Please keep me in your prayers Tuesday, I'm more than a little bit nervous...if there is a bad side effect to be had, I'm usually the one who has it...Thanks for being there you guys! and Rob 18

Spondy

Pinpoint customers who are looking for what you sell.

[Guest guest]

Thank you. I'm feeling less nervous after reading BUNCHES and going on Medline and looking at clinical trials. I really appreciate your support.

and Rob 18 Spondy Re: Rituxan > ,> > I will be praying that this medication gives you all the relief > you so need and deserve, with no side effects. > > Hugs,> > nancy & amanda> > snooksmama@... > wrote: > It looks like my first infusion will be Tuesday. Its scary, but > I am having so much trouble the last few days, and I'm tired of > living on prednisone. Please keep me in your prayers Tuesday, > I'm more than a little bit nervous...if there is a bad side > effect to be had, I'm usually the one who has it...> Thanks for being there you guys!> and Rob 18 Spondy> > > > > > ---------------------------------> Pinpoint customers who are looking for what you sell.

[Guest guest]

I wish to good success with the treatments

I don't anything about the drug. except for

my hemo doc asking if I'd ever tried it!

Tell your guys both a big Hello from a Rusty

Old One!

hplta

Rusty

[Guest guest]

sure! I dont think I am getting it now, as we are talking about

surgery on my back, I haev another appointment on friday

> > >

> > > Jan:

> > > I, too, was very, very concerned when I read that. After

> > further

> > investigation and talking further with my rheumy, this ONLY

> > occurred

> > in patients being treated for lupus.

> > > I am still researching, though.

> > > Thanks for your input.

> > > Is rituxan approved for kids yet? I know it is very expensive.

> > > and Rob 18 Spondy

> > >

> > > Rituxan

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > My Humira is not working. I'm seriously considering

> > beginning

> > > > Rituxan treatments. Does anyone on this board have any

> > > > experience to relate? My NP at the rheumy office has

> > achieved

> > > > remission with this drug. They have given it successfully to

> > > > dozens of patients over the last 2 years (both in clinical

> > > > trials and out) with no adverse effects. And, it is given

> > > > initially in an infusion, then another?2 weeks later, then

> > not

> > > > again for up to a year. You still have to continue

methotrexate.

> > > >

> > > > Anyone who has any 2 cents to put in, I'm listening...

> > > >

> > > > (adult onset RA) and Rob 18 Spondy

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> >

_____________________________________________________________________

> > ___

> > > > Email and AIM finally together. You've gotta check out free

> > AOL

> > > > Mail! - http://mail.aol.com

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Joanna and all, I know you don't know me, but I have a question for all of you.

People on the list seem to know alot about some of the medications given for

PsA. I am suppose to be starting a medication called Rituxan. I can't be on

Humira because of reoccuring bladder infections. Now they want to put me on

this because I am becomming deformed now. I have not been on anything for

almost a year now. Any ways I was wondering if you heard of this drug. Guess

it is a chemo med and I have to take it by IV infusion. Thanks for listening,

.

[Guest guest]

:  this is not a drug I've heard of before and when I need to know

something I go first to the web.  The company's website on this drug is at

http://www.rituxan.com/ra/index.jsp.  It primarily discusses rituxan for

treatment of RA but most drugs that treat RA also are used for PA.  There are

some interesting and very significant potential side effects and I would look at

them carefully and question your doctor about his experience with patients on

the drug.  I assume you've tried Embrel and Remicade or they won't work for you

either? 

I hope others in the group have had actual experience with the drug.  It is so

helpful to know that others have been thru exactly what you're going thru and

can give you advice on the practical, little (and big) stuff your doctors never

bother to tell you!!!!!   Good luck with it.  I so hope it helps.  Enbrel has

been a god-send for me. 

 Joanna Hoelscher

[Guest guest]

You might pick up a copy of THE GREAT WHITE HOAX

There's a whole chapter in there

Subject: [ ] Rituxan

I have recently been diagnosed with stage 3 non-hodgkins lymphoma. I have

gone to 2 oncologists: one wants to do chemo and the other recommends Rituxan.

Knowing what I know about chemo, I definitely am not going that route. I was

wondering if anyone with NHL has had the Rituxan and what your experience has

been. Also, if anyone has any knowledge they want to contribute about Rituxan, I

am eager to hear it.

Vicki

[Guest guest]

I went on Amazon.com and found your book.  However, when I typed in Rituxan,

nothing came up.  Which chapter did you write about it?

Vicki

i

[Guest guest]

Folks - I've posted twice about Rituxan recently, and I do not want my responses to be confused.

One was to a patient who was being treated with Treanda, and I suggested they check into adding Rituxan.

The second concerned when to add R to F or FC, and there I said that R is sometimes added later, to give the tumor load a chance to go down, and avoid infusion, tumorlysis syndrome, problems.

In a message dated 11/8/2009 8:26:46 A.M. Eastern Standard Time, tbladee@... writes:

please forgive me ,i fiil like i skip class everyone using fcr or fc. ihave started my search.my platlets was 78 my wbc was 58 ,my doctor treated me with treanda.its a new chemo .it was introduce to the physicians and patients and april 2008 > >> > - it sounds like he's getting close to treatment, although the > > numbers aren't bad. One thing you did nit mention is the lymphocyte doubling > > time, which is sometimes a good indicator.> > > > Putting off R is a common approach.> > > > Sometimes they give it in the first cycle, but at the end of the cycle.> > > > > > In a message dated 10/28/2009 10:41:08 P.M. Eastern Daylight Time, > > cindaroo10@ writes:> > > > > > > > > > It has been 2 !/2 years since my 48 year old husband was diagnosed with CLL > > and we are discussing if it is time to treat. He is unmutated and 38+, his > > latest counts are:> > WBC 96.7> > RBC 3.92> > HG 11.0> > HC 34.6> > Platlets 113> > Abs. Lymph. 88.0> > Abs. Neut. 5.0> > His spleen is extremely large and he has many bulky nodes. He would like > > to wait until February and we were wondering what anyone thinks. Are there > > certain numbers that mandate treatment? He still has energy and night sweats > > only 2-3 times a week.> > > > Also, our doctor suggested 6 months of FCR - but said we might want to > > start the first month with only FC to get rid of some of the bulkiness before > > introducing R the second month. Has anyone heard of the approach?> > > > Thanks,> > > >>

[Guest guest]

So, what would you suggest?

Thanks,

Ellen R.

cllcanada wrote:

There are many myths in CLL and the idea that Rituxan is a gentle

treatment is one of them.

Nothing to treat CLL is remotely gentle. Perhaps it is gentler than

FCR, but only by degree.

Rituxan can cause a number of side effects and suppress the immune system

for months, perhaps years.

Other adverse reactions include:

-FATAL infusion reactions

-Tumour Lysis Syndrome, sometimes fatal

-Severe Mucocutaneous Reaction, sometimes fatal

Rituxan carries a number of Black-Box warnings from the FDA

and you can read all the side effects here in .pdf

http://www.accessdata.fda.gov/drugsatfda_docs/label/2004/103737_5055lbl.pdf

It can also cause fatal brain disease called PML, in a very, very few

patients.

http://online.wsj.com/article/SB124381351149970563.html

This stuff is not aspirin...

~chris

__._,_.

[Guest guest]

>>So, what would you suggest?

You must understand that side-effects are rare. Many people

have treatments and don't skip a beat, others have problems. The

frustrating thing is it is impossible to know going in to treatment.

This is why it is important to have a doctor who is experienced in

treating CLL.

Ultimately, what treatment you select is between you and your doctor.

~chris

>

> >

> > There are many myths in CLL and the idea that Rituxan is a gentle

> > treatment is one of them.

> >

> > Nothing to treat CLL is remotely gentle. Perhaps it is gentler than

> > FCR, but only by degree.

> >

> > Rituxan can cause a number of side effects and suppress the immune

> > system

> > for months, perhaps years.

> >

> > Other adverse reactions include:

> >

> > -FATAL infusion reactions

> > -Tumour Lysis Syndrome, sometimes fatal

> > -Severe Mucocutaneous Reaction, sometimes fatal

> >

> > Rituxan carries a number of Black-Box warnings from the FDA

> > and you can read all the side effects here in .pdf

> > http://www.accessdata.fda.gov/drugsatfda_docs/label/2004/103737_5055lbl.pdf

> >

> > It can also cause fatal brain disease called PML, in a very, very few

> > patients.

> > http://online.wsj.com/article/SB124381351149970563.html

> >

> > This stuff is not aspirin...

> >

> > ~chris

> > __._,_.

> >

>

[Guest guest]

By the time TV commercials finish the warnings about a drug, most of us would cut off a limb rather than take it. But then all we have on the positive side is a hair-dyed actor cheerfully saying that he, or parts of him, can stand up again after taking the drug. Not exactly a balanced presentation...Chris's post about Rituxan reminds me of that—and also about the blind man and the elephant. Years ago, I asked my oncologist about Fludarabine's long-term effects. I'd read about some of them and I was pretty scared. What my doctor did was to break down the odds and then talk about the positives as they applied to me. He never claimed he could see the whole elephant but he showed me much more, enough so I had a balanced picture of what I was dealing with. The doctor, one of top CLL researchers and doctors, has earned high praise on this list at times for his forthrightness. At various points in the development of most drugs, something awful will "come to light." Usually, the words "may" or "linked to" or "can lead to" will also appear. In the case of Rituxan, for example, one of those was a headline about Rituxan being "linked to" a brain virus, sometimes fatal. As you read down you come to the following sentences: "It is not yet known how rituximab is connected to the brain virus and who may be at risk. notes that the best information on the frequency of PML [the virus] is among patients with lupus with an estimated rate of 1 in 4,000 patients developing PML." And:" said it was known that a small number of patients with lymphoma get the [viral] infection regardless of the drug [Rituxan]." In other words, No significant connection between the virus and Non-Hodgkin Lymphoma has been found. But yet the headline read: "Rituximab Linked To Often Fatal Brain Virus." Imagine if I'd stopped reading there!! I haven't followed up on each of Chris's dire warnings but I think there's a pretty good chance I'd find some insufficient or misleading data. I think Chris's part of the Rituxan elephant is a fraction of one hoof and probably applies to a far-off herd. Which doesn't mean it's not important. But the odds are vastly different than his headlines would lead you to think.Some of you may feel like my friends who, after 9/11, said they were taking off for the hills, emergency kit in trunk. "Even if there's a 1/ 1 million chance it could happen again, I'd feel like a fool if I stay and it happened." Well but the odds were hugely in favor of nothing happening and it was more important to me not to uproot myself, to stay where I loved living and where for 66 yrs I'd been safe. Were my friends wrong? Does the fact that they never actually left mean I turned out to be right?No, of course not. But what I can say is those friends believe in long shots and are much more likely than I am to play the lottery. The odds are gigantlcally in favor of their losing. And when the stakes are our lives, I prefer to have the odds in my favor. But as long as we have a balanced description of the pros and cons, we do each get to decide,-Ellen Diamond

There are many myths in CLL and the idea that Rituxan is a gentle

treatment is one of them.

Nothing to treat CLL is remotely gentle. Perhaps it is gentler than FCR, but only by degree.

Rituxan can cause a number of side effects and suppress the immune system

for months, perhaps years.

Other adverse reactions include:

-FATAL infusion reactions

-Tumour Lysis Syndrome, sometimes fatal

-Severe Mucocutaneous Reaction, sometimes fatal

Rituxan carries a number of Black-Box warnings from the FDA

and you can read all the side effects here in .pdf

http://www.accessdata.fda.gov/drugsatfda_docs/label/2004/103737_5055lbl.pdf

It can also cause fatal brain disease called PML, in a very, very few patients.

http://online.wsj.com/article/SB124381351149970563.html

This stuff is not aspirin...

~chris

----------------------------------------------------------

>

> chris- His thoughts that day where basically the same as yours except that he did not think Ofatumumab would turn out to be a good replacement for Rituxan in my CLL/SLL situation.

> Can you enlighten me to why so many posts have been so negative about Rituxan when it seems to be, at times, a great tool for toxicity adverse young folks like myself.

> gerrit

>

[Guest guest]

Thanks, Ellen, for your balanced appraisal. I had read that PML occurred

primarily in people who had already had an alkalyting agent.

Ellen R.

Ellen Diamond wrote:

By the time TV commercials finish the warnings about

a drug, most of us would cut off a limb rather than take it. But

then all we have on the positive side is a hair-dyed actor cheerfully saying

that he, or parts of him, can stand up again after taking the drug.

Not exactly a balanced presentation... Chris's post about Rituxan

reminds me of that—and also about the blind man and the elephant.

Years ago, I asked my oncologist about Fludarabine's long-term effects.

I'd read about some of them and I was pretty scared. What my doctor

did was to break down the odds and then talk about the positives as they

applied to me. He never claimed he could see the whole elephant but he

showed me much more, enough so I had a balanced picture of what I was dealing

with. The doctor, one of top CLL researchers and doctors, has earned

high praise on this list at times for his forthrightness. At

various points in the development of most drugs, something awful will "come

to light." Usually, the words "may" or "linked to" or "can lead to"

will also appear. In the case of Rituxan, for example, one of those

was a headline about Rituxan being "linked to" a brain virus, sometimes

fatal. As you read down you come to the following sentences:

"It

is not yet known how rituximab is connected to the brain virus and who

may be at risk. notes that the best information on the frequency

of PML [the virus] is among patients with lupus with an estimated rate

of 1 in 4,000 patients developing PML."

And:

"

said it was known that a small number of patients with lymphoma get the

[viral] infection regardless of the drug [Rituxan]."

In other words, No significant connection between the virus and Non-Hodgkin

Lymphoma has been found.But yet the headline read:

"Rituximab

Linked To Often Fatal Brain Virus."

Imagine

if I'd stopped reading there!! I

haven't followed up on each of Chris's dire warnings but I think there's

a pretty good chance I'd find some insufficient or misleading data.

I think Chris's part of the Rituxan elephant is a fraction of one hoof

and probably applies to a far-off herd. Which doesn't mean it's not

important. But the odds are vastly different than his headlines would

lead you to think. Some of you may feel

like my friends who, after 9/11, said they were taking off for the hills,

emergency kit in trunk. "Even if there's a 1/ 1 million chance

it could happen again, I'd feel like a fool if I stay and it happened."

Well but the odds were hugely in favor of nothing happening and it was

more important to me not to uproot myself, to stay where I loved living

and where for 66 yrs I'd been safe. Were my friends wrong?

Does the fact that they never actually left mean I turned out to be right? No,

of course not. But what I can say is those friends believe in long

shots and are much more likely than I am to play the lottery. The

odds are gigantlcally in favor of their losing. And when the stakes

are our lives, I prefer to have the odds in my favor. But as

long as we have a balanced description of the pros and cons, we do each

get to decide,-Ellen Diamond

There are many myths in CLL and the idea that Rituxan is a gentle

treatment is one of them.

Nothing to treat CLL is remotely gentle. Perhaps it is gentler than

FCR, but only by degree.

Rituxan can cause a number of side effects and suppress the immune system

for months, perhaps years.

Other adverse reactions include:

-FATAL infusion reactions

-Tumour Lysis Syndrome, sometimes fatal

-Severe Mucocutaneous Reaction, sometimes fatal

Rituxan carries a number of Black-Box warnings from the FDA

and you can read all the side effects here in .pdf

http://www.accessdata.fda.gov/drugsatfda_docs/label/2004/103737_5055lbl.pdf

It can also cause fatal brain disease called PML, in a very, very few

patients.

http://online.wsj.com/article/SB124381351149970563.html

This stuff is not aspirin...

~chris

[Guest guest]

Good morning

 

First I would want to know why your doctor wants to start treatment. Our web site is wonderful for information on this www.cllinfogroup.org click on the treatment tab on the left of the page. Another page is CLL Topics

http://clltopics.org

 

Why does your doctor want to use Rituxan as your first treatment choice? Rituxan is typically used in combination with other drugs.

 

What symptoms are you having, enlarged lymph nodes, night sweats, enlarged spleen high white counts.

 

Tipton age 65

dx 2000, FCR in 2004, gradual relapse since 2007, single agent Rituxan Dec 2009

 

 

 

 

On Wed, Apr 28, 2010 at 2:31 PM, <jjjjc84@...> wrote:

 

I have been newly diagnosed with CLL/SLL and my doctor want to treat me with Rituxan immediately. I am trying to find out information on this drug and some of your experiance with it.

[Guest guest]

Rituxan worked really well for me with enlarged spleen and anemia due to

NHL, was in remission for 2 1/2 years. I am now taking rituxan again once

a week for 8 weeks this hoping for a longer remission. It is well

tolerated and I only had some flushing and back discomfort the first dose

and no after problems. Went bowling that night and feel completely normal

the next day. Hope this helps. Maureen

> Good morning

>

> First I would want to know why your doctor wants to start treatment. Our

> web

> site is wonderful for information on this www.cllinfogroup.org click on

> the

> treatment tab on the left of the page. Another page is CLL Topics

> http://clltopics.org

>

> Why does your doctor want to use Rituxan as your first treatment choice?

> Rituxan is typically used in combination with other drugs.

>

> What symptoms are you having, enlarged lymph nodes, night sweats, enlarged

> spleen high white counts.

>

> Tipton age 65

> dx 2000, FCR in 2004, gradual relapse since 2007, single agent Rituxan Dec

> 2009

>

>

>

>

> On Wed, Apr 28, 2010 at 2:31 PM, <jjjjc84@...> wrote:

>

>>

>>

>> I have been newly diagnosed with CLL/SLL and my doctor want to treat me

>> with Rituxan immediately. I am trying to find out information on this

>> drug

>> and some of your experiance with it.

>>

>>

>>

>

[Guest guest]

I might also recommend cllforum.com.I've had Rituxan as a single agent twice, once in 2007 at the age of 61 and Dec 2009 at the age of 63.  They've been treating me for acquired von Willebrands disease, a rare bleeding disorder, caused by my CLL.

On Thu, Apr 29, 2010 at 8:39 AM, Tipton <dcdtip@...> wrote:

 

Good morning

 

First I would want to know why your doctor wants to start treatment. Our web site is wonderful for information on this www.cllinfogroup.org click on the treatment tab on the left of the page. Another page is CLL Topics

http://clltopics.org

 

Why does your doctor want to use Rituxan as your first treatment choice? Rituxan is typically used in combination with other drugs.

 

What symptoms are you having, enlarged lymph nodes, night sweats, enlarged spleen high white counts.

 

Tipton age 65

dx 2000, FCR in 2004, gradual relapse since 2007, single agent Rituxan Dec 2009

 

 

 

 

On Wed, Apr 28, 2010 at 2:31 PM, <jjjjc84@...> wrote:

 

I have been newly diagnosed with CLL/SLL and my doctor want to treat me with Rituxan immediately. I am trying to find out information on this drug and some of your experiance with it.

[Guest guest]

My husband has been on various protocols of Rituxan monotherapy for almost 7 years. It has worked very well for him and keeps him symptom free, although he has a fairly aggressive disease with the 11Q. However, it does not work for everyone, and I would never suggest beginning any drug until absolutely necessary.

[Guest guest]

How often does he recieve this and at what dose. How do they tell he is doing well? Re: Rituxan

My husband has been on various protocols of Rituxan monotherapy for almost 7 years. It has worked very well for him and keeps him symptom free, although he has a fairly aggressive disease with the 11Q. However, it does not work for everyone, and I would never suggest beginning any drug until absolutely necessary.

[Guest guest]

,

To answer your question about Rituxan, my husband currently gets one Rituxan infusion (standard dose) every three months. He has been on this particular protocol for a year and a half I think, before that he used the more familiar 4 infusions (one per week) and repeated that as needed, which was usually every 10 or 11 months.

He is doing well as per his counts go back into normal range and in fact RBC,HCT, HG almost never get out of normal range. His spleen shrinks to normal after R, his nodes are reduced by about 75%. He has almost no symptoms, no infections, works a normal day, has excess energy. The disease is relentless, so nodes begin back up- lymphocytes too after each round, but over the last 7 years this has been his routine. There has been very little down side. Does not work this way for everyone and we keep a close eye to see when this needs to change.

[Guest guest]

Has he ever had 8 in a row to see if the remission lasts longer? That

is what my Oncologist is suggesting. I went 2 and 1/2 years before I

needed treatment so we are trying the 8 in a row. Maureen

> ,

> To answer your question about Rituxan, my husband currently gets one

> Rituxan infusion (standard dose) every three months. He has been on this

> particular protocol for a year and a half I think, before that he used

> the more

> familiar 4 infusions (one per week) and repeated that as needed, which

> was

> usually every 10 or 11 months.

> He is doing well as per his counts go back into normal range and in fact

> RBC,HCT, HG almost never get out of normal range. His spleen shrinks to

> normal after R, his nodes are reduced by about 75%. He has almost no

> symptoms, no infections, works a normal day, has excess energy. The

> disease is

> relentless, so nodes begin back up- lymphocytes too after each round, but

> over the last 7 years this has been his routine. There has been very

> little down side. Does not work this way for everyone and we keep a

> close eye

> to see when this needs to change.

>

[Guest guest]

Thanks, it's like a chronic ailment and hope he continues to do well !! Re: Re: Rituxan

Has he ever had 8 in a row to see if the remission lasts longer? That

is what my Oncologist is suggesting. I went 2 and 1/2 years before I

needed treatment so we are trying the 8 in a row. Maureen

> ,

> To answer your question about Rituxan, my husband currently gets one

> Rituxan infusion (standard dose) every three months. He has been on this

> particular protocol for a year and a half I think, before that he used

> the more

> familiar 4 infusions (one per week) and repeated that as needed, which

> was

> usually every 10 or 11 months.

> He is doing well as per his counts go back into normal range and in fact

> RBC,HCT, HG almost never get out of normal range. His spleen shrinks to

> normal after R, his nodes are reduced by about 75%. He has almost no

> symptoms, no infections, works a normal day, has excess energy. The

> disease is

> relentless, so nodes begin back up- lymphocytes too after each round, but

> over the last 7 years this has been his routine. There has been very

> little down side. Does not work this way for everyone and we keep a

> close eye

> to see when this needs to change.

>

[Guest guest]

Maureen, Yes he used to get 8 infusions and very early on that did give him a much better clearing, but in the last years the 8 infusion protocol did not do more than the 4. Strange how it changes over time. Yes , we do treat it like a chronic illness, so far so good! We have no doubt that at some point this too will change and we will have to look elsewhere.

[Guest guest]

I've had polymyositis since 1997 and ILD since 3/07 and have taken a variety of

meds throughout. I was taking imuran when diagnosed with ILD in 2007; my plumo

dr switched me to cellcept to achieve a better response. I developed allergic

reactions after about a year so was taken off everything for 4 months before

starting on 150mg of imuran again. My blood counts and muscle responses indicate

the imuran is not now working to fight the PM. So ... my doctor wants me to

switch to rituxan. I'm not so sure about taking it since I've read about the

many terrible side effects.

Who has or is currently taking rituxan? What have you experienced? Did you get

an infusion of 100mg prednisone prior to the rituxan infusion? If so, what are

the side effects of that? I've taken prednisone periodically during the past

three years, so have experience with long-term dosages of up to 60mg.

I apologize for the long message but need to make some decisions based on

real-life experience. Thanks!

gigi PM 1997, ILD 2007, Raynaud's 2008

[Guest guest]

I am currently on Rituxan and it has helped me greatly. Without it I hurt big

time. Before the infusion I get a Claritin pill, 2 tabs of extra strength

Tylenol. 20 mins later the nurse inserts my IV and injects a super shot of

steroids. They hang the Rituxan and away I go. The first time you get Rituxan

you get 2 infusions that are 15 days apart. After that you only get 1 infusion

about every 4-6 months. I go every 5 months. The very first infusion takes

about 6 hrs. After that it takes about 4 hrs every infusion. The side effects

are not that much different than any other infusion. What I like is I get it

once every 5 months. and not weekly or monthly.

Hope this helps.

in MN