Lymph node pain........

[Guest guest]

Lori, about the Lymph node pain, after your history, I would suggest pulsing

with Prednisone or Dexamethasone. That means taking it one day a week for a

couple of months. That method is much safer than taking it every day and could

take the pain away or even take the nodes way down. Something you should talk

over with your doc. Also, Rituxan has been known to help with getting lymph

nodes and lymph node pain down and handled. All depending on how it's done

etc.

cheers, Kurt

--------- Bonnie & All on Chloramkbucil & various

Chemo's..........

Good morning,

I took a quick look this morning and found one of the most important papers

from Dr. Hamblin concerning research and factual medical study facts concerning

Chlorambucil. You will notice that Chlorambucil is a Chemo, it does have the

ability to cause secondary cancers, especially in the treatment of other cancers

other than CLL and most important when you compare it to all other standard

chemotherapy now beingt used, ie. Fludurabine, Cytoxin, Cytoxphosphomide, CHOP,

Campath, and combinations thereof such as RFC, F or FC or CR or others etc. etc.

ALL of these other Chemo's and combinations of Chemos carry with them all a much

more deviant possibility of creating secondary cancers as well as a very real

threat and substantiated evidence of immujne suspression and permanent immune

system damage from their use. Chlorambucil does not carry these same

permanently dangerous possibilities from the low dosage promoted with it's use.

Plus it leaves the door open " IF " it does not work to still be able and

qualified to go use any of these other heavy aforementioned chemo's at a later

date. So, again as I always ask, Why not use the mild treatment of

Chlorambucil first before trying all the other dangerous and proven damaging

drugs that are ot the standard of use?

Especially, regardless of your proper pre-testing by using the quest methods

to determine your type and kind of CLL, Chlorambuicil is still going to have a

certain functional facgtor that goes along with the possibility of Chlorambucil

working regardless of which you have the mutated or unmutated versions of CLL.

Again, taking it to see if you might happen to be one of those it works for is

primarily a generally safe and efen effective treatment and protocol when it is

used in combination with Rituxan ie. simultaneously as given on the pulse two

weeks on, two weeksw off method at low dose.

Here is Dr. Hamblins message to me concerning the possibilities of

Chlorambucil - Lukeran causing later cancers down the road.

Dear Kurt

Chlorambucil is an alkylating agent like mustine, melphalan and

cyclophosphamide. There is no doubt that it can cause other cancers,

particularly MDS and acute leukemia (AML). But practical experience does not

bear that out. AML developing on top of CLL is very rare indeed. I have seen it

three times in 30 years. Two of these had never had any treatment for their CLL,

so chlorambucil could not be inmplicated. The other case in retrospect was not

true CLL but splenic lymphoma with villous lymphocytes mimicking CLL. She had

had a lot of chlorambucil. On the other hand I have seen a lot of MDS and AML

after cyclophosphamide, and the Mustine containing regimen for Hodgkins Disease

was notorious for causing acute leukemia and later on breast and lung cancer. I

don't know why chlorambucil should be an exception, and I have to say that I

have seen MDS following chlorambucil when it is used to treat ovarian cancer.

The comparative safety of chlorambucil in CLL is not just my idea. Both Danny

Catovsky and Guillaume Dighiero who respectively run the Brittish and French

clinical trials also say that they have seldom if ever seen acute leukemia after

chlorambucil.

Terry

There are also many other articles from Dr. Hamblin giving clear explanation

as to his personal findings from years of treating CLL that indeed he did have

many patients that were treated with Chlorambucil that went on to live full

lives without further treatment of any kind later in life. He also showed that

None of the other standard Chemo's now given routinely for the treatment of CLL

have aproduced a longer remission than Chlorambucil and in many cases not even a

more quality of life partial remission, however there have been other good

quality of life remissions that have lasted longer before relapse, but have not

produced longer complete remission.

What we are dealing with here is the wonder drug Rituxan, that has shown it's

amazing ability to control CLL, now being used in combination with Chlorambucil.

Again, doing no permanent damage. In 2002 as many will remember and as is well

documented, I was one of the most sick CLl patients on record as being near

death just prior to taking my first treatment of Rituxan combined with

Chlorambucil. I was advised by all specialists in CLL among which were Kipps of

UCSD, of Sutter Memorial, Coutre of Stanford, the docs of MD. ,

Dr. Andre of Scripps Research in LaJolla, and many other doctors I had seen of

which and many, many oldtimers were aware of here on the combined

boards....I was advised by all these doctors to take any and every variation of

hard Chemo being used at the time, Fludurabine, RFC, FC, RC, combinations of

HDMP, Hyper-CVAD, Campath, CHOP etc. on and on.

Instead I took LRCP. Leukapheresis to remove the very high WBC that I carried

at over 500,000, removed in a couple of weeks of treatments to about 40 to

60,000 WBC, then took the same heavy dose Rituxan of the time developed by Dr.

Byrd at Walter Reid Hospital, now of Ohio State measured at 375mg/m2, 3 times a

week for 4 weeks to total 12 infusions given in one month. Now today I am

taking 500mg//m2 for the same 3X a week period totaling again 12 infusions. I

myself still consider this amount to be a small amount of Rituxan and a very

safe mode of treatment when given properly. This treatment, although I was

quite ill again with rapidly developing large tumors in the Liver and the Spleen

and large spleen involvement developing rapidly with fatigue and edema and

pressure developing inside the body due to the size of the tumors etc. did not

have any WBC or Lymph involvement. Something in the first treatment I took had

removed the ability of the CLL to rapidly produce the out of control WBC, my WBC

has remained normal since 2002. Small consolation but it is something with

significant meaning and as far as the lymphs go we are attempting to bring them

back out of the marrow and the lyumph system by using GM-CSF which is Neupogen

at no more than 300mcg at each infusion, to total 12 sub-Q injections of 300mcg.

It is possible to take more but ony at the risk of Stroke. So it is limited to

300mgs at each injection.

I am also taking Prednisone with the new Pulsing method of taking a large dose

of 40 to 50mg of Dexamethasone once a week on a Sat or Mon and then taking no

further DEX or Pred for the rest of the week. This according to new research

has a way of working at it's best advantage to fight against the CLL while

doing the least damage to the immune system.

So as you can see, most if not all of what I am doing is based upon good

sound medical research and specialized CLL experience, rather than following all

the still NEW Chemo regimens and protocols floating around out there with

doctors who are in a hurry to be using the latest and best treatment regardless

of the side-effecgts and regardless of the long term effects involved in those

new treatments. Or at least to my way of thinking.

Well, I have to go now, much to do, another infusion today. Wish me well,

Good luck to all in your particular protocol and treatment.

Happy Day, Monday, Nov. 14, 2005 Kurt Grayson