Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 - thanks for your valuable input - always good to have your comments - people cannot help but learn from your postings - Balan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 -- In SLL-CLL-edu , jb50192@a... wrote: > I don't know what B2M means - BM usually stands > for " bone marrow " , maybe a " 2 " got in there by mistake - keep in touch - Balan ==================== B2M stands for beta 2 microglobulin. It does not have anything to do with BM (bone marrow), it is a snippet of protein that is released by CLL cells. Measuring the level of this protein in the blood is therefore a measure of the number of cancer cells in the body. The relationship is less than perfect. For example, when you go into therapy with the likes of Rituxan, and CLL cells are getting killed in droves, some of the cellular debris from the killing gets into the blood and jacks up the B2M count. A quick comment on chlorambucil: this alkylating agent works by damaging the DNA of cells, and it has significant degree of mutagenicity. Anecdotal information based on individual patients is not the same as large studies conducted in a rigorous fashion. Chlorambucil is easy to administer (oral tablet), and cheap (it is no longer patent protected), but it gives precious few CRs (complete responses), people become resistant to it after a while, and it does pose the risk of secondary cancers down the road. The devil is in the details. It may be good short term tactics, but not so good long term strategy. Incidentally, use of chlorambucil upfront may make you ineligible for some of the more interesting immunotherapy options coming down the turnpike, and I would also expect that monoclonals like Rituxan work a lot less effectively on patients that have had chlorambucil as frontline therapy. I am not quarrelling with the personal experiences of individuals who posted here on the subject. Just that in my experience, one swallow does not a summer make, and chlorambucil is good at providing short term palliative care with symptoms, not as good at providing long term therapy strategy. When there were precious few other options, it was a good game. Now that we have the possibility of making CLL a managed disease much like high blood pressure or diabetes for a good percent of the patient population, it is important to play your cards right. It is no good if you win the battle today but you loose the war tomorrow.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Dear CLL Patients and caregivers: A discussion on this or any other forum between concerned parties does not make an argument of ill feeling, instead it only makes a discussion between different points of view concerning medicines, drugs, treatments, medical research facts and hopefully such discussion will clarify, not confuse the issues. Point in discussion, 's excellently written opinion posted just before this reply. In fact I agree with most of what said concerning Chlorambucil "when used by itself in heavy dosage and when used prior to other Chemo's to be used later. There can be no equal comparison between Chlorambucil and the many mixtures available for us and our doctors to choose from such as RFC and FC and FR and RC or Rituxan/Chlorambucil as well. It is clear that any of the major Chemotherapy's or Monoclonal antibiotics available for us individually or in mixture with other drugs do also cause damage to our body's in ways both similar and different to Chlorambucil. In other words if one is going to recognize the damage Chlorambucil causes in any respect, in high or low dosage, then you must also recognize the damage all the other available Chemo's and drugs cause when taken as well. Then to be astute and properly involved you must make a comprehensive study and comparison of all the different damages caused by all the different drugs available to us and then arrive at a "pick your poison" place in time, 'before treatment. This takes a great deal of time and investigation that is usually left to the current standards and the discretion of your doctor. Unless you are a person who demands to know these answers yourself, then you become involved and investigate and do it yourself. My discussion and study did not involve the promotion of taking Chlorambucil by itself, although I did concede that Chlorambucil has been taken for years fairly safely when compared to the damage caused by heavier Chemo's and other experimental drugs. it is a fact that some 20% to 30% of people who take Chlorambucil by itself in low daily dose do receive a positive response at a much lower danger of permanent damage to the immune system when compared to the damage caused by other Chemotherapy's now available. It is also true that many of the studies and protocols demand that Chlorambucil nor any other drug shall have been taken prior to first time administration of a particular new study. However, there are many studies that have been conducted and are now being conducted for refractory patients who have used prior drugs including Chlorambucil and are now given new or alternate drugs, Chemo's, Monoclonal antibodies as a method of determining efficacy and positive response. Many of these studies, such as RFC have shown that prior use of other treatment drugs before administering RFC did not prohibit total response, even to PCR negative conclusions. My sharing of my own experiences concerning my personal investigation, protocol and current health situation with this forum and any other forum was simply that, a personal sharing. Done so that others may have the benefit of my single experience. In fact I agree that it's not possible to verify the importance nor the true validity of such a personal experience without a followup controlled study. However, no such exact study has been done yet. But, I'm sure that this is how all such studies begin. With a single experience that promotes an idea worthy of study. From the time of my dx I certainly didn't like the options I was being offered for treatment, especially concerning the benefit I could 'possibly' receive as compared to the 'damage' I was likely to receive from the treatments available. So I designed my own protocol and my own treatment and it has worked and today I have normal CBC counts across the board, with platelets at 108 and rising each time they are measured. My body has also responded with a normal spleen and disappearance of all swollen nodes. I am now walking and jogging and going to the gym and my body is responding like it did 6 yrs ago before my dx. Either I have experienced divine intervention or......there is truth to the synergy of the drugs I took in my treatment. Most important on this forum I did not promote Chlorambucil as a single agent therapy at the beginning of treatment as suggested. In fact I advised the person in question who said their doctor was going to give them chlorambucil and nothing else, to see other doctors and get other opinions as Chlorambucil by itself was not considered a good treatment today compared to other available treatments. What I did suggest was that the person in question strongly consider Rituxan as a first treatment therapy and to also consider taking Chlorambucil at low dose immediately after the Rituxan was completed, to create a synergy or combination of effect between the two drugs. I included a published study involving the treatment of Rituxan/Chlorambucil with a 63% positive response for all to consider and I suggested this because this is what I took that ended up with the health I am enjoying today, which I consider to be a successful response as I described above. I advised this person to check with her doctor and other doctors and to strongly consider these milder treatments of Rituxan and Chlorambucil that offer less damage to the immune system and marrow as compared to the benefits available to the more harsh and damaging drugs of Fludurabine, Cytoxin, Chclosphosphomide, (sp) CHOP, CAMPATH or any mixtures of the same such as RFC, FC, RF etc. etc. which "all often cause" irreversible damage to the immune system and marrow. I also told the person that I myself knew my success was only temporary, that someday I myself might have no choice but to use the more powerful mixtures of Chemo. However, due to my investigation and my own considered opinions, I chose the milder approach to first treatment options among all the damaging drugs and I recommend that everyone else strongly consider the approach of treating with Mild medications such as Rituxan/Chlorambucil first before going to the next level of more damaging drugs. I hope this clear things up a bit. Happy Weekend to all, Kurt Re: chlorambucil -- In SLL-CLL-edu , jb50192@a... wrote:> I don't know what B2M means - BM usually stands > for "bone marrow", maybe a "2" got in there by mistake - keep in touch - Balan====================B2M stands for beta 2 microglobulin. It does not have anything to do with BM (bone marrow), it is a snippet of protein that is released by CLL cells. Measuring the level of this protein in the blood is therefore a measure of the number of cancer cells in the body. The relationship is less than perfect. For example, when you go into therapy with the likes of Rituxan, and CLL cells are getting killed in droves, some of the cellular debris from the killing gets into the blood and jacks up the B2M count.A quick comment on chlorambucil: this alkylating agent works by damaging the DNA of cells, and it has significant degree of mutagenicity. Anecdotal information based on individual patients is not the same as large studies conducted in a rigorous fashion. Chlorambucil is easy to administer (oral tablet), and cheap (it is no longer patent protected), but it gives precious few CRs (complete responses), people become resistant to it after a while, and it does pose the risk of secondary cancers down the road.The devil is in the details. It may be good short term tactics, but not so good long term strategy. Incidentally, use of chlorambucil upfront may make you ineligible for some of the more interesting immunotherapy options coming down the turnpike, and I would also expect that monoclonals like Rituxan work a lot less effectively on patients that have had chlorambucil as frontline therapy.I am not quarrelling with the personal experiences of individuals who posted here on the subject. Just that in my experience, one swallow does not a summer make, and chlorambucil is good at providing short term palliative care with symptoms, not as good at providing long term therapy strategy. When there were precious few other options, it was a good game. Now that we have the possibility of making CLL a managed disease much like high blood pressure or diabetes for a good percent of the patient population, it is important to play your cards right. It is no good if you win the battle today but you loose the war tomorrow.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2005 Report Share Posted March 19, 2005 Thanks for your reply to my comment about Chlorambucil being an " old drug. " Before I begin to respond, I wish to say that I am not a doctor and people should NOT take any medical advice from me. This decision should be made alone between them and medical professionals. Here is my take... From what I have read, most CLL doctors agree that the key to extending the lives of CLL patients is through long,durable, disease-free remissions. You have a better prognosis by the longer you can stretch your remissions. To date Chlorambucil has not produced such remissions, the patients always relapse. The issue of drug resistance then becomes a factor and you run out of bullets. Of course the case that you are doing " less damage " is a valid one but in my (non-professional) opion you are still not helping yourself in your overall prognosis. I think there is also some psychological carthosis that comes from taking drugs on a regular basis in a maintenance program. One feels that they are " doing something " and have the illness under control. I would submit to you that there are those who are getting such long remissions under the FRC regiment that they are slowly beginning to classify some cases as a " cure " (ie: they have been followed for 3+ years without any signs of disease). {Do a GOOGLE search on CLL Cure. } Of course this remains to be seen but again as I noted above the key to a good prognosis with CLL are long, durable remissions. Yesterday's drugs do not avail to that and that is precisely why they are constantly looking for better ones. This disease will not be defeated until someone comes across the right drug or right combination of drugs to impare it, so in my opinion what failed yesterday is probably not the best choice for today. > > Subject: personal decisions, Chlorambucil, old drugs, > > As the discussion on this subject might help, I thought to continue putting > some thoughts on paper. > Thanks Kurt for your eloquent letter, I always find comforting to have a > member like you on the list that can express things well and is so caring, > for the benefit of all. > 20 years ago I lost a friend through cancer, I saw her going through > terrible chemo treatments and suffering, always with hope of cure, we talked > about our impending death and those left behind, When she died I realised > her > illness had a great impact in me and the way I would approach the future. > I have always lived as if I was going to die soon. That made me think that > death was a reality, and how much we suffer before that through toxic drugs, > after that in the following few years several other > friends died of cancer as well, all had chemo treatments. > I made up my mind then never to have chemo if I ever had cancer and would > let the > cancer take its course to the end without chemo drugs. > The first onc. and haematologist I saw at diagnose were very pushy with > chemo, the last thing I needed with my made up mind, I was treated like a > child that has to do what she was told with no reason given, but this is > good for you etc. > A year after diagnose I consulted Prof. Catovsky in London and accepted the > fact that I would have some sort of treatment. > After my blood transfusion, I saw the old (a young man) haematologist again, > I came out of the hour meeting with my mind made up I would not have > treatment, again gone back to my original decision. I am sure even we were > both very polite during our meeting we said everything in our ability to > upset each other as we did not have one single thing in which we agreed. > What saved it was my GP, when I saw her next morning and told her about the > meeting, she said we change consultants, I will refer you to another one. > This was a completely different experience, and of course the new consultant > knew the reasons I had been referred to her. > It was a tough time to accept something I had decided NOT to do for so long, > now > I was turning and accepting chemo, but if I had to have chemo, why no do > something mild, even if it did not work, I would buy time to feel strong > again and continue my fight with my believes. > During that month I worked hard at research, I read lots of 's > articles on the research list and had a lot of help from members of this > list and the private support from members of the Acor list, some of my > alternative friends also understood my situation and supported me. > > An old drug does not make it any less because it is old or because new ones > are on the market. I spent many years of my live working in the > pharmaceutical world, one of the largest pharmaceutical companies in the > world. I knew about drug competition and promoting the products with > doctors, their trials, profits/losses. > Chlorambucil is old, and that mean more is known about the drug, good and > bad, because it is old it is also cheap, they have made their profits so > they can effort to give it cheap. Just like aspirin and other such things > are old. > Where I applaud all those people looking for a cure for CLL, I am just > contented with having a comfortable life without side effects, I have had a > long useful life, I only want quality days ahead no quantity, If my children > were young that would be another matter, that was a worry I had in the back > of my mind for years while they were growing up as my own mother died when I > was 2 and her own parents died during the flu epidemic in 1918 within a week > of each other, But I managed to survive to see them grown up and adults. > So as long as low doses Chlorambucil gives me quality of life I will endorse > that. > UK Universities and research companies are doing a lot of work on monoclonal > antibodies, maybe something good will come out of it, also the Green tea > extract work being done is very exiting, more and more the medical > profession is looking for less toxic drugs, maybe I am not the only > difficult patient, maybe there are others giving a hard time to their > doctors, so they have to work on less toxic treatment. > With best wishes > Chonette (UK) > dx 10-02 > Prednisolone and low doses Chlorambucil > > > > " > You have one fact wrong in your repsonse. Campath is not a > chemotherapuetic agent but a > > monoclonal antibody. My wife is getting FRC right now and doing GREAT. > Good luck with > > your Chlorambucil regiment, but it is yesterday's drug. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2008 Report Share Posted April 11, 2008 The first dose of Chlorambucil which I took four days ago has significantly improved my breathing. i hope it continues.I am to take another dose 15 days after the first after my onc. checks me out again. With Chlorambucil, I am taking Valtrex to ward off shingles. In addition I am taking 7 days of Ceftin each month for prophylactic purposes to ward off infection instead of Bactrim, which dangerously lowered my blood counts. Thank you all for all your concern about my breathing problems. , you mention " our website " . Where is the one to which you refer? Carolyn __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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