Re: Retreatment - Fred

[Guest guest]

Fred - yes, I was careless when I said that we had not heard from anyone with

multi-TX - I apologize -

How long between the Fludara alone and the next Fludara?

What was the effect of the second Fludara? We keep hearing that Fludara once

is tough enough on the immune system. But now I hear several people have had

it again.

Do you recall what the " others " were?

Thanks, we're getting a really interesting picture here.

[Guest guest]

,

My CLL dates back to probably Jan. 1997 when a slightly higher than normal WBC was noticed during an annual physical. When it was even higher in Jan.1998 I was sent to a hem/onc who made the diagnosis with flow cytometry. I was aware of no symptoms.

By Feb.2000 I was experiencing fatigue, minor infections; a CT scan showed abdominal nodes up to 3cm. WBC was only 70K. I took Fludara monthly for three months. Though the nodes and the WBC quickly went down, I was still feeling crummy and decided in August to visit Dr. Kipps. By the time I saw Kipps I was feeling much improved; Kipps said my reaction was typical for a short (normal is 5 months, I believe) treatment with Fludara.

Near the end of 2001 I could feel the PR slipping away as the WBC went up (40K) and platelets (24K) down. In April 2002 I started a combunation of Rituxan, Fludara, Novantrone and Decadron. I had the typical brief first infusion reaction to Rituxan and after that no immediate problems. I did react to the antiemetic Kytril (absolute constipation) and to the steroid Decadron (Insomnia, hives) which by the second round had me walking on my knees. Had to suspend infusion twice to go on prednisone (the only thing that worked) to wipe out the hives.

I declined both Kytril and Decadron for the third round and suffered no problems at all. They wanted me to do at least four rounds (to achieve a longer remission) but I was so weakened I said No Thanks! Of course, I had Neulasta after each week of infusion and it did a great job to keep me out of neutropenia.

I'm now 20 months out from the second therapy (good!); the WBC (18K) creeping up; more, and more severe colds than normal; and more periods of something akin to very mild fatigue. It was fun while it lasted and I'll try to squeeze out a few more months before the next TX. That's about the whole story.

Fred Hummel, 77, Arcata, CA;CLL/SLL dx 1.98; Fludara 2000;Rituxan, Fludara, Novantrone, & Decadron, April-August 2002.

[Guest guest]

Fred - a very interesting situation, thanks for sharing.

We hear rarely about people getting only three rounds of Fludarabine, it's

usually four to six. The patient and the doc decide whether more rounds are good

(more treatment) or bad (hurting the patient's immune system).

I had four.

Another side of the argument is how often the rounds are repeated. When

Fludara first came out the gospel was a weekly treatment every four weeks, six

times. This seemed too much, too often. My guys decided to stretch the interval

to

5-6 weeks, that way you can get the benefit of more treatments with less

negative effects.

We're all different. Do you think your first remissions might have been

longer without the other drugs and with one or two more cycles of Fludarabine?

Useless hindsight......

Since you were diagnosed back in 1997, you have a good track record, two

2-year remissions.

I wonder what you think is in the cards next. Have you discussed it?

That's the whole idea of this " re-treatment " subject we're on now.

Thanks again and good health!

[Guest guest]

Hi folks,

I'm new to the list, just joined last night, so I don't know if this has been discussed but I'll tell you my story anyway. I had Chlorambucil which did nothing, four rounds of Fludara a month apart and 2 rounds of CHOP. Nothing worked. Infact my lymphocyte count went from 50% to 60% in my bone marrow. I got into the clinical trial at Stanford for Campath and after 6 weeks of treatment in had complete response. NO RESIDUAL LEUKEMIA CELLS. The stuff works. Before I started the trial the Dr's gave me 3 to 6 months. That was January of 2000. I don't mean to sound like an advertisement for Campath but it saved my life and I have my life back. I'm doing everything I used to do with very few restrictions. Campath is out of clinical trial now and available for use to the general public. Stanford is now working on using Campath first to see what the long term effect is.

Sue Buntejb50192@... wrote:

Fred - a very interesting situation, thanks for sharing.We hear rarely about people getting only three rounds of Fludarabine, it's usually four to six. The patient and the doc decide whether more rounds are good (more treatment) or bad (hurting the patient's immune system).I had four. Another side of the argument is how often the rounds are repeated. When Fludara first came out the gospel was a weekly treatment every four weeks, six times. This seemed too much, too often. My guys decided to stretch the interval to 5-6 weeks, that way you can get the benefit of more treatments with less negative effects.We're all different. Do you think your first remissions might have been longer without the other drugs and with one or two more cycles of Fludarabine? Useless hindsight......Since you were diagnosed back in

1997, you have a good track record, two 2-year remissions. I wonder what you think is in the cards next. Have you discussed it?That's the whole idea of this "re-treatment" subject we're on now.Thanks again and good health!