Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Hi Kurt, Thanks for sharing the note from your hem/onc advisor - I was especially glad to hear the second paragraph comments about what drugs can be beneficial after trying others, and when one is eligible for certain treatments. Please let your physician friend know how much we appreciate the time it took to provide this detailed response and how much we benefit from getting this kind of specific feedback.. Best regards, Goodwin More on Chlorambucil......... and all,I correspond regularly with several different doctors, 2 of which are on theconsortium. Our correspondence is an agreement of confidentiality. So Ican't mention names. They are touchy feeley kind of guys. Anyway I askedthem the same questions about Chlorambucil that I posted a couple days agohere on CLL Research. Below is my first received response."Kurt: your questions about chlorambucil are all good. You really receivedcombined Rituxan and chlorambucil therapy after the leukapheresis. Thechlorambucil was given for 2 months for an estimated total dose of 240 mg.This dose is not usually associated with severe marrow failure or DNAdamage. But as I recall you did require some time to recover after stayingin W & W so long.. If the low dose chlorambucil had been continuedindefinitely, that is the type of administration associated with any seconddrug induced cancers. You had such a good response that I would have toconsider trying the same protocol a second time when you need to be treatednext. And I am still not aware of any published studies combiningchlorambucil with Rituxan other than the study you sent posted on , which I think is a good idea for some patients. Also theavailability of oral (pills) chlorambucil and the reasonable cost isbeneficial for most patients in combination therapy.And the bottom line is that as single agents, there is no difference insurvival when chlorambucil and fludarabine were compared. What about theorder of drugs given? Refractory Patients treated upfront first withfludarabine have a low response rate to chlorambucil but not the other wayaround. Patients refractory to chlorambul still can respond to fludarabine.But what about therapies coming down the pike? I am still not aware of anydefinite studies that show patients being ineligible for such therapiesunless they are being evaluated as untreated patients. But when that is thecase, those reagents will soon be available to previously treated patients.And retreatment with single agent Rituxan also has merit in your case. Ifthe response were suboptimal, then chlorambucil could be added and if thatfailed then the chlorambucil would be discontinued and the fludarabine couldbe added with or without cytoxan. Your idea of initial treatments andfollowup is reasonable for similar patients As you can see it is never asimple situation." , this is the kind of thinking that I think will soon become more thenorm concerning the re-emergence of Chlorambucil in combination with othertreatments and drugs especially with patients considering a first treatmentprotocol. In fact, as new facts come in, this treatment may also beconsidered helpful and less harmful with second treatment protocol as well.The value of Lukapheresis prior to these first or second treatment protocolsmay also become much more valuable that previously considered. I will postnew information as it comes as I truly do believe that new and different useof mild treatment agents is in most cases more beneficial than the acceptedgold standard of treatment today.A wish of good health to all,Kind Regards, Kurtdx 1999, tx 10/2002 Leukapheresis, heavy dose Rituxan, Low dosechlorambucil, Prednisone. Followup with transfusions, Aranesp and neulasta.Now in Remission, normal counts with Platelets at 108 and rising. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Kurt - brilliant - seems we can conclude that Chlorambucil can be taken without harm as a sort of "first line" approach, perhaps with Rituxan - certainly Fludarabine is more aggressive to the system, and I'm not surprised that Fludara failures do not respond well to second line Chlorambucil. Perhaps the other way around, first Chlorambucil, then Fludara. With Rituxan, possibly, although your doc says he is not aware of much published on this. We keep hearing though that Rituxan enhances the performance of many other drugs it is given with. Balan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 : You made a good sort of 'general organization' of some of the main thoughts, but you and everyone out there will find that few doctors will go along with this new approach of using Chlorambucil at all, or even Leukapheresis. Their experience of Chlorambucil in recent years is as an old drug put on the shelf and not used as Fludurabine produces much the same result with the benefit that the results usually last a little longer and it effects a larger % of patients who take it. Thus it has become the current gold standard. Fast being challenged by RFC now in the mix. The fact that is important to us the patient, is that Fludurabine and RFC are both very damaging to the immune system i.e.. the marrow! Sure sometimes it is fine and doesn't cause that much damage and many times even when it does cause damage the good and beneficial results obviously make up for the damage. However, The fact remains that there is now another option. The fact that Leukapheresis/Rituxan/Chlorambucil is much less damaging, especially in low dose therapy's, in which there is now little if any damage shown, all the while showing that this less damaging combination can possibly work just as well. That is a very important reality to the patient who is trying to be cured or treated while having as little damage as possible to their bodies.. This new option of considering Chlorambucil again after all these years as a new treatment "in combination and mixture with the process of Leukapheresis (if needed for high WBC and Rituxan/Chlorambucil and or Prednisone if needed, are all mild and good and effective agents for the treatment of CLL "Without the threat of major damage to the immune system and marrow. That is what makes it attractive and once again worthy of consideration. It must be remembered that Chlorambucil is now being considered not as a first therapy treatment, but as a second agent in a mixture with the process of Leukapheresis and then Rituxan, with Chlorambucil taken after the Rituxan has been fully administered or as the new study from shows, taken simultaneously with Rituxan. It is at this point that in combination with Rituxan, a mild therapy treatment, that Chlorambucil now adds the dimension of another mild therapy treatment that will hopefully bring effective management to the control of CLL without significant damage to the immune system. If doctors are willing and eager to test Campath and Cytoxin or Cyclosphosphomide (sp) or other clearly harmful and very damaging drugs in an initial or follow-up therapy to the CLL patient, then why are they clearly not as open to first time or follow-up therapy with Leukapheresis/ Rituxan then Chlorambucil in a mild or low dose form that does not damage the body? Especially now that it definitely does offer an alternative to management of CLL, again, without significant damage to the immune system? Simple, they just don't know about it yet. Something new is always at first scoffed at and then later expounded upon as a wonderful discovery. This situation is the same. They simply haven't considered it yet. Even now when I tell people about it, most people scoff and say Leukapheresis? "Chlorambucil ?? why would you want to drive a model T ? Well, the model T. has been combined with the most successful medicine out there in the last couple of years, "Rituxan" and the combination or synergy created obviously gives an option of treatment, that is not significantly damaging as compared to all the other treatments out there, including the current gold standard of Fludurabine or RFC. Last but not least as the old saying goes, I was a severely sick patient, who took Leukapheresis/ Rituxan/ Chlorambucil/ Prednisone and I am now a year later in Remission with normal counts across the board, Platelets at 108 and rising. Spleen back to normal size, all large nodes gone. Feeling great and my body is sustaining it's own blood counts. Of course I am only one person. But hey, do we need to be hit over the head with a hammer before we take serious consideration of this new possibility? Especially when our doctors are promoting that we take clearly harmful drugs as a first treatment option. Especially when the more harmful drugs can be taken later if this mild treatment fails to work. Nothing is 100%. Especially not the more harmful drugs of Fludurabine and RFC that everyone is promoting. Just some more thoughts, driven home redundantly. Regards, Kurt I think I am being redundant now. The main point is, what is the danger or harm in trying the mild approach first? Not much if any harm is realized from trying it first. It still leaves the other avenues and treatments open for later Re: More on Chlorambucil......... Kurt - brilliant - seems we can conclude that Chlorambucil can be taken without harm as a sort of "first line" approach, perhaps with Rituxan - certainly Fludarabine is more aggressive to the system, and I'm not surprised that Fludara failures do not respond well to second line Chlorambucil. Perhaps the other way around, first Chlorambucil, then Fludara. With Rituxan, possibly, although your doc says he is not aware of much published on this. We keep hearing though that Rituxan enhances the performance of many other drugs it is given with. Balan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Kurt - no, you are not being redundant - as I mentioned in my initial post on Chlorambucil, European doctors still think very highly of this approach, as several of my European friends will testify. The issue of whether taking it with or without Prednisone came up, to be sure. Leukapheresis, clearly, depends on whether or not you have sky high WBC. posted her opinion that Chlorambucil can be damaging, but perhaps that is a question of dosage. I do not think much of Europe is doing FCR. Depends on your point of view. Balan Quote Link to comment Share on other sites More sharing options...
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