4 replies to this topic

[snickers]

Hi Everyone,

I was talkng with a gal this weekend who has CML and I was astonished when she told me how her Drs. were treating her CML.  The treatment was to do nothing but wait and see!!??!!  I asked her what her counts were when she was dx and she said it was 17,000 for her white count.  She said she has had it for six years and it has never gotten over 23,000.  Her Dr. told her not to look it up on the interent or find any info about it and that he would let her know if she needed to worry.  She never had a BMB and she had no clue what the philadelphia chromozone was.  She gets blood tests every three months but knew nothing of a PCR or Fish test.  She says all her other counts are normal except this rise in her white blood count.   I was amazed and confused.  I am happy for her yet can't help but be a little concerned.  Does anyone else know of a person like this?

dd

[Marnie]

HI, Snickers. . .I'm guessing she has CLL, not CML.  I know someone with CLL, and that is the accepted treatment now, "watchful waiting."

Marnie

[Trey]

Agree with Marnie -- that is how CLL is often treated.  If someone knows so little about their disease, then they probably don't even know the difference between CLL and CML.  CLL can be very benign in many cases, and may never require treatment.

Having said that, never having a BMB is very, very, very bad practice when dealing with any leukemia, even CLL.

http://www.cancer.or...cytic-diagnosis

[Susan61]

HI:  What Trey and Marnie said is true, and the fact that this poor girl is only taking the advice of this one doctor is not good.  No BMB or FISH test, to even check things out to be sure she has CML or CLL or whatever is going on in her body.  If she is a good friend that you can talk to, tell her to go get a second opinion as to her diagnosis let alone how to treat it. This cannot be CML in my opinion also.

Susan A.

[Karenin.Hache]

Hi snickers,

Her doctor may or may not be right in his approach to treatment, but it never hurts to get a second oppinion if she's concerned.