Re: Rituximab Alone

[Guest guest]

This was my first in 2004 and I did well. My second

treatment 6 years later was two drugs and I did not finish

due to pneumonia. I am now on my third within a trial with

Cal 101 and Fludarabine. Best of luck.

[Guest guest]

Peggy - I had rituxan weekly x4 on three different occasions

because my CLL involves my kidneys and, like you, other

than that one complication I would have been watch and wait.

I had no problems and was able to work the next day. The key

is to make sure they start slowly and that you let the

infusion nurse know immediately if you feel even the

slightest bit off - tingling in the throat, flushing,

anything. At UCLA the protocol is that the first dose is

given over two days. I don't know what the protocol is at

Stanford. Best of luck in finding the right answer. Is the

swelling because of your tonsils? A couple of people on

another list had theirs out not too long ago and are doing

well now.

Pat

[Guest guest]

No that is not the normal reaction. I have had only

rituximab twice for marginal zone lymphoma. First time 4

treatments one week apart and then 3 years later 8

treatments. Both times the first dose a little reaction and

none after that. Pre treat with tylenol, benadryl, steroid.

the first reaction was the shivers which after slowing the

IV it stopped. I also so Dr. Coutre at Stanford. I am a

retired nurse. Hope this helps. The first dose is given

over 4-6 hours anticipating a reaction, the next 23 doses no

reaction, so can be given much faster.

Peggy wrote:

......today I had a patient that was hospitalized because he

really had a rough time going through his Rituximab cycles....

pneumonia, entubation, very low platelets. Is this typical?

[Guest guest]

Peggy,

Single agent rituximab has a dismal response rate in CLL,

but the higher the dose, the higher the response rate. Also

the greater the expense. Ask the doc to order at least

500/meter squared after the first infusion. Consider a 6

week course if you are still responding after 4 weeks and

there is evidence of residual disease by palpable nodes or

in the blood. I suspect that responses tend to be shorter

duration. Mine have been.

The upside is that R has very low toxicity. And the R will

continue to work for months after the last infusion. The

most common issue is an infusion reaction, though there are

some rare reports of very serious infections.

All said, there is little down side and a significant upside

in your case. And if you respond, then the rate of response

is irrelevant.

We are all in this together.

Enjoying being a new grandfather, and clearly responding (if

only partially) to rituximab and cyclosporine for a 4th time.

[Guest guest]

Peggy,

Like Pat, I decided to opt for R monotherapy as HDRTX (High

Dose Rituximab TX) when RF (Rituxan & Fludara) sent me into

stage 4 renal failure after Cycle 2. The suspect was

reaction to F.

The HDRTX protocol called for infusions of R @100mg/m2 on

Mon, 250mg/m2 on Wed and 250 mg/m2 on Fri for week 1 and

then 375mg/m2 for the remaining 3 weeks, three times per

week.

The first day I got severe chills but no fever. I " sailed "

through the rest of the week and walked two miles to and

from lodging to hospital. That weekend I began a severe

reaction which sent my creatinine up and blood pressure down

putting me in a wheel chair for a day. I had to abandon R-

infusions and it took two months to mostly recover though

retaining further kidney dysfunction.

Since this experience, I have met several people who have

had severe reaction to R. This is not the more typical

anaphylactoid mimic of anaphylaxis that most people suffer

in the beginning of the infusion of R, but a more serious,

potentially life threatening response. This kind of response

is possible from Serum Sickness, Macrophage activation

syndrome and or a dysfunction in the Complement cascade that

R causes in attacking the B-cells. The irony is that I also

got a good response to reducing the tumor burden from only

three infusions.

Moral of my tale: We are all different so beware of early

onset of reaction symptoms from your drugs, particularly if

you have compromised organ function of the kidney, liver or

heart.

Dancing with the Bear on my terms for now,

WWW

[Guest guest]

The interesting difference between my Rituxan experience and

Wayne's is that in my case my kidneys were failing because

of the CLL and the Rituxan (not high dose) saved me from

needing a kidney transplant, and brought the CLL under

control, while for Wayne the Rituxan caused the kidney

issues. I, like you, got totally different opinions from the

local hematologist and from the specialists at UCLA and feel

very fortunate to have moved on to them, as the local

doctors completely missed the kidney issue, which, while

unusual, was my major issue. I've come to the conclusion

that there is no such thing as a typical case of CLL, and

therefore, no such thing as " the right treatment " for

everyone.

Pat

[Guest guest]

Not so Pat,

Prior to any treatment my kidneys were definitely being

compromised by the CLL as born out by my charting of the

Comprehensive Metabolic Panel (electrolyte panel) on 's

" Your Charts " since diagnosis. I have posted details on the

ACOR ListServ forum in the past.

Rituximab is extensively used and favored by Nephrologists

for a variety of kidney conditions with good results and was

part of my strategy worked out with doctor approval for

HDRTX. In my case more common kidney issues to include

nephrotic syndrome had been ruled out.

My rare reaction to use of Rituxan was an AMPLIFICATION of

whatever was the CLL cause of the kidney problem. The only

real way to discover the original cause would be through a

biopsy, considered too invasive and not leading to any

better treatment course of action. In other words, a biopsy

showing deposition of kappa light chain protein in the

kidney (as an example) would not have warned anyone that

Rituxan should not be used if Serum Sickness were to become

the reaction.

This was the main reason I posted my experience, to expand

on the differences we face with this Bear of a disease.

Again I say, 'Pay attention to all early signs of drug

reactions' My experience will most likely and hopefully not

be most other's experience.

It also underscores the futility of trying to find someone

similar to you by which you could follow with a successful

TX strategy. You said it all Pat, at the end of your post.

WWW