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Hi!

I am Melody Corkhill. I have Non Hodgkin's lymphoma. I had Rituxin twice

and thought it did no good. Later I went to Houston to start a clinical

trial of Antineoplastins and had to have a bone marrow biopsy. It had been

positive before, but needed to be rechecked because of the two tries of

Rituxin. The biopsy was negative! Even though I thought it had not done

anything, it obviously was more effective than I knew!

Wish you the best. Melody Corkhill

ncmanx@...

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  • 5 years later...
Guest guest

I take Rituxan, too. I had my first two treatments and will be getting my third

one later this month. They give me Solumedrol, too, as I had a reaction the

first time. Hope it works for you.

I did have a really bad flare in between treatments, but I am hoping it works

for me.

Gail

lotr56@... wrote:

Well-had my first Rituxan on Friday and so far so good! Had a mild

allergic reaction-just stuffy/runny nose, sneezing, watery eyes, but was

able to finish with no interruptions. They preload you with 200 mg of

Solumedrol so was on the megasteroid rush for about 24 hours and am now

coming down. Next one in 2 weeks! Ann

>

>

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  • 3 weeks later...

,

I am getting my third Rituxan treatment this Thursday. They always give me

solumedrol 30 minutes before the infusion to guard against any reactions. They

did the same thing when I was taking Remicade.

Can't tell if it is working yet or not. It's been six months since my last

treatment and I did have a major flare in between. Lot's of stress going on in

my family right now, so no surprise there.

You might want to talk to them about preventive measures (like they do with me

on the solumedrol) since you already had a reaction to the Remicade. Not sure

what they'd use on you for that, but that's what did the trick for me.

Best of luck!

Gail (KY)

Palmer wrote:

Hello fellow Stilligans,

I hope this note finds you feeling better today than yesterday. Today I found

out that my insurance company will pay 100% of Rituxan infusions. This is the

exact same company and policy that forced me off kineret with a $500 copay. But

now they are willing to pay in the neighborhood of $25,000 per year for four

infusions. Go figure. Anyway, I am looking for any input from those who have

been on this. My first infusion is Sept. 10. A little history...the last time I

had a Remicade infusion I nearly died with an anaphalactic reaction. Trying not

to be scared of this drug, but they are clear about the risks of death during

the infusion and the first 24hrs afterward. I have also been on Enbrel, Mtx,

Arava, and Kineret. I think I will have to start mtx again, but do any of you

take Arava with Rituxan? Advice or experience would be greatly appreciated.

Thanks in advance.

Stay Healthy

Branson, MO

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

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  • 1 year later...

, I'm so scared of any extra hormones we put in the body. I

somehow think (my mind only I'm sure) that they play a part in

Stills. So many of us had the onset or flares when they change. I

had a hysterectomy, then less than one year later, contracted

Still's. That being said, the hysterectomy was a blessing...no more

pain there! I'm 53 and childless...the biggest regret in my

life...although adoption is always a wonderful option. (My husband

had a child through his first marriage and didn't want to

adopt...but I'm a great Aunt lol)

You're very young to make that decision...if it is still a

decision. I think when the Dr.s say you must have the operation,

that's when to have it. In teh meantime can't they do a DNC to

remove some of the tissue and relieve some of your pain? What a

tough decision.

I had a similar experience with Enbrel...it worked for a little

while, but then just quit and I got worse and worse. I am feeling

so optimistic about the Rituxen....finally! I hope it's not a

temporary thing. Thanks so much for asking. Hope you have a

relatively pain free day.

in SA

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, I'm so scared of any extra hormones we put in the body. I

somehow think (my mind only I'm sure) that they play a part in

Stills. So many of us had the onset or flares when they change. I

had a hysterectomy, then less than one year later, contracted

Still's. That being said, the hysterectomy was a blessing...no more

pain there! I'm 53 and childless...the biggest regret in my

life...although adoption is always a wonderful option. (My husband

had a child through his first marriage and didn't want to

adopt...but I'm a great Aunt lol)

You're very young to make that decision...if it is still a

decision. I think when the Dr.s say you must have the operation,

that's when to have it. In teh meantime can't they do a DNC to

remove some of the tissue and relieve some of your pain? What a

tough decision.

I had a similar experience with Enbrel...it worked for a little

while, but then just quit and I got worse and worse. I am feeling

so optimistic about the Rituxen....finally! I hope it's not a

temporary thing. Thanks so much for asking. Hope you have a

relatively pain free day.

in SA

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, I'm so scared of any extra hormones we put in the body. I

somehow think (my mind only I'm sure) that they play a part in

Stills. So many of us had the onset or flares when they change. I

had a hysterectomy, then less than one year later, contracted

Still's. That being said, the hysterectomy was a blessing...no more

pain there! I'm 53 and childless...the biggest regret in my

life...although adoption is always a wonderful option. (My husband

had a child through his first marriage and didn't want to

adopt...but I'm a great Aunt lol)

You're very young to make that decision...if it is still a

decision. I think when the Dr.s say you must have the operation,

that's when to have it. In teh meantime can't they do a DNC to

remove some of the tissue and relieve some of your pain? What a

tough decision.

I had a similar experience with Enbrel...it worked for a little

while, but then just quit and I got worse and worse. I am feeling

so optimistic about the Rituxen....finally! I hope it's not a

temporary thing. Thanks so much for asking. Hope you have a

relatively pain free day.

in SA

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  • 2 years later...
Guest guest

Rituxan generally works best on white counts, lymphocytes,

and nodes (spleen is a node). It is less spectacular in its

effect on the marrow.

In a message dated 4/4/2011 4:05:32 P.M. Eastern Daylight

Time, bethcat@... writes:

Dr. Hamblin was good enough to answer that perhaps those

with lower white counts going in may have less of an

initial reaction, since that's what I had asked. I was

wondering if that's the case, in patients who have lower

counts, but more nodal involvement might get 'delayed'

reactions as the Rituxan takes effect on the CLL that is in

the nodes, or marrow, spleen etc ? With apologies for my

amateurish question. It would make sense, but may have

absolutely no basis in science.

beth fillman

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Hello,

I haven't posted in awhile, but to reiterate my situation

briefly, I was diagnosed with CLL/SLL in September. I also

have alopecia universalis and extreme itching. I am 52

years old.

Recently, I broke out in a rash on my face (similar to

little pimples that just took over) and was told it was a

staph infection. To dry this all up I was given an

antibiotic and prednisone. That worked well - but since

that time, after having gotten off the prednisone, it seems

my itching is going crazy.

Went back to the internist, and was given Singular and

Allegra (2 x a day). That dried me out so much, went back

to the derm - and he took me off Singular, but added Atarax,

and kept the Allegra twice a day and added Zantac once a

day.

I am all kind of emolients - Eucerin original, Cerave,

Vanicream - but only the Eucerin Plus seems to penetrate my

skin, although the dermatologist told me to stop that - as

it is an irritant. However, Eucerin original was ok. All

the creams seem heavy and seem to increase itching, even

though they are supposed to lubricate the skin.

I have a CLL specialist that has seen me once, and he

mentioned that as a future possibility because of my skin

problems, itching, etc - maybe we could start Rituxan,

although it was an extreme measure and he would be

collaborating with others.

I mentioned this to my dermatologist, and he said he thought

that was a great idea (and I forget how he phrased it

exactly), however; if the CLL took over, my options would be

limited at a later date. He does feels that the CLL is an

underlying cause of my skin issues.

I am seeing a Hopkins allergist in May (Dr. Bruce Bochner)

and have read that he was doing research on high IgE levels

with a drug called Omalizumab. My IgE level was 2406 in the

fall. I have also heard he " thinks out of the box " so I am

hopeful he may have some more answers or a new solution.

So, I guess my question to Dr. Furman and Dr. Hamblin and

any others who may want to weigh in on this, is what do you

think about this Rituxan idea and do you have patients that

have extreme itching with CLL?

Thanks much.

Debbie

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