Re: Treanda?

[Guest guest]

Joan, Everyone is different so I don't want to scare you. I

had Rituxin 7 years ago and then last May/June I started the

6 month combination of Treanda/Bendamustine and Rituxin.

After two treatments I got pneumonia was hospitalized and

did not get the last four treatments or I don't think I

would be typing right now. In January I came to realize I

needed treatment again just 6-7 months later and will start

on a trial of CAL101 and fludarabine on Tuesday after a few

months of waiting for paper work to get done. I wish you

luck Treanda is a tough drug to take. I did have every side

effects from day 14-20. You may tolerate it differently.

When I speak to others they also admit what a tough drug

this is (treanda) but as I say some handle it OK. You

probably know it has been around for a long time in East

Germany and just started being used here in the past few

years.

Doug

[Guest guest]

My sister-in-law's mom is 88 and relapsed for NHL. She's

the energizer bunny and has had several different

treatments, and a number of remissions while she continues

tirelessly to travel the country visiting various daughters

and their families, going to plays and art exhibits, etc.

Right now she is in cycle 5 of 6: Treanda / Rituxan and is

doing well. After her third cycle, her counts were low so

they waited for several weeks to resume. She gets 1 day of

R and one day of T, so this may be quite different than the

CLL cocktail. She has had no complications, but they do

call her the Miracle Lady at the Kellog Cancer Center in

ton, Ill. Three years ago, her family was advised to

bring in hospice.

I confess that I was shocked when I heard what her treatment

was going to be, as I had read of some CLL-ers having a

tough time with Treanda. But perhaps those that don't have

a problem, don't post. Anyway, Miriam has done very well

with her treatments so far.

Lynn

[Guest guest]

Thanks Doug. I can appreciate what you say as I had side

effects from FC like you had from Treanda. Hard to figure

what will happen but I know from my own experience that

sometimes the cycles have to be further apart so you can get

through them. I will be listening and checking further. I

did mention CAL101 to my Onc and he said he could get me

into a trial. I certainly will not stay with Treanda if it

doesn’t suit me.

Thanks,

Joan

[Guest guest]

Hi Joan,

I had Treanda plus rituxan, preceded by FR also 8 years

prior. Your MD might have told you that it's a relatively

new drug in the US - but has been used in Eastern Europe

for more than 40 years for CLL and other cancers.

There are some posts about it in this listserv - you do a

search for Treanda and bendamustine, and you'll also find

some from me.

My regimen was once a month for 4 months - it cleared most

of my nodes after the first treatment - which also happened

8 years ago with FR (I have bulky nodes).

It is a slightly rougher ride than FR - which my oncologist

warned me. With FR, I had virtually no side effects - just a

little flu-ish and tired. The notable difference with

Treanda is a mild-to-moderate nausea. I was not retching,

just felt vaguely nauseated. Plus a bit more hair loss (I

had a very slight amount with FR), which has completely come

back. The nausea lasted about 2-3 days. Some people get

great relief from antiemetics, but I didn't do so hot with

that. With each infusion, they gave me steroid which put off

the nausea for a day or two. This was not at all an issue

with FR for me.

The more serious problem came after the 2nd round - fever

which sent me into the hospital, which they dx'd as

pneumonia. All of my bloods were pretty wiped out - which is

to be expected. But while my white cells recovered fairly

well, it took a few transfusions to get my hemoglobin back

up. This definitely could have been from the rituxan. They

were suspecting hemolytic anemia until day 3 in the hospital

when my bloods recovered enough to go home.

I have had a skin rash ever since the treatment which the

mds cannot explain - and it was not the reaction described

in the PI. It's like an eczema - could be stress.

I did not get any of the oral sores that they warn about -

but I was pretty meticulous about oral care, and suggest you

do too. My post-treatment regimen was the same as with RF:

antibiotics and antiretroviral.

The really good news is that my nodes have stayed down and

I've felt really great for the past 6 months. I have an

appointment on Thursday to check out my status and will

certainly share that info with you privately if you like -

just email me.

The thing that bugs me about Cephalon is there's 40 years

experience with bendamustine in east germany, but cephalon

does not share that experience - or at least they would not

last year. But I guess the fact that it's been used for 40

years says something good about it! I would just like to

know some of the long-term effects - we don't have the

benefit of that with drugs like rituxan and fludarabine.

I wish you all the best!! Feel free to write me offline.

Marietta