Wow, that's great information. I will look that website up. I visited the m.d. anderson website and printed out a bunch of info for our onc. (I don't think he is a hemotologist onc.) The first time my husband went through all this he had FISH test that said there was no evidence of a translocation (9,22) after about a year on gleevec, he sustained that for 2 years until his previous onc took him off gleevec (dang it). Hopefully he can get back to that again soon, but I feel like if I don't know how to understand these results, I won't know if he is responding to gleevec as he should be. You are lucky to have a Dr. you can trust to keep up with all the new info. I will look up Anjana and Roys website and get up to speed. Anjana's name sounds very familiar to me, did she use to be part of this group? I used to visit this group 5 years ago when he was first dx'd. Thanks again for all your help, hope you continue to do well, Teresa
--- In [email protected], "Brenda Morelli" <[EMAIL PROTECTED]> wrote: > Teresa, > PCR is the most sensitive testing that can be done to detect the > leukemia. the U stands for 'undetected'. They have tested a > 1,000,000.00 cells from my bmb/bma and found no signs whatsoever of > the leukemia. This is considered 'complete molecular remission' and > is the deepest level you can reach in today's science. There are > also three phases of the disease most everyone is dx in chronic, > which is determined by your blood count and blast count. If your > hubby is having difficulty with his counts dropping sometimes there > is other medications that can get him through until his counts level > off, that is a common reaction but most stabilize after a while. If > you are looking for some 'great' information about CML, the > terminology and info explaining the disease you can go to Yahoo and > visit the AsianCML website, the owners of that web Anajana and Roy > (hubby and wife) are the best educators I have found and caring > wonderful people to boot. They have compiled great material that new > diagnosed patients can read that gives you all the starting > information you need. Just remember, knowledge is power and with > power you can win the fight. I don't recall if you said whether or > not your doc is hemotologist/oncologist but the docs the carry both > specialties tend to have a better knowledge of CML. My doc stays > current on all the new trials and treatment so I feel confident in > his care. Keep us posted on how you guys are doing. > Brenda > > > > --- In [email protected], "tkabushaban" <[EMAIL PROTECTED]> wrote: > > -Thanks so much Brenda, I will definately mention this to his Dr. > at > > our next visit and I will take the information with me from the > > website so that he will hopefully get it. I think that getting > that > > good, deep response sounds like something we all want and I am sure > > he would get used to 400mg if it meant that he would get to > > (remission?) faster. By the way what does prcu stand for? > sometimes > > when I read through these posts, I have a hard time understanding > > some of the abbrv. Also, what is the best test available to > > determine where you are at with CML, is it the BMB or the FISH, how > > do they differ or compare? Sorry to ask so many questions of you, > > but you seem very knowledgeable and I think it is important that I > > get a good understanding of all of this before we meet with his Dr. > > again. Thanks again, > > Teresa > > > > -- In [email protected], "Brenda Morelli" <[EMAIL PROTECTED]> wrote: > > > Yes, the numbers are moving in the right direction and hopefully > > > he'll be back at 0 in the next 6 months. I hit pcru between my 9 > > and > > > 12 month bmb. Minimum dose has been set at '400' mg for some > time > > > now, you can read that on the Gleevec website or even go to MD > > > Anderson website where they are discussing the trials and such. I > > > would approach you onc with this information. Lots of people > have > > > side effects in the beginning and a good majority of them get > > > through/over them, for those that continue to be intolerant or > > > resistant most have moved on to some of the new trial therapies > and > > > have done wonderfully. Remission is critical for several > reasons, > > to > > > eliminate the risk of disease progression which makes it harder > to > > > treat, lowers your chances for mutations, the deeper the > remission > > > the lower the chance of relapse, however some patients are called > > > turtles and are slow moving but continue to move in a downward > > trend, > > > which is good and acceptable. In my personal opinion the faster > > and > > > deeper the response the better. I hope your hubby continues his > > > great response and is back in remission soon. > > > Take care, > > > Brenda > > > > > > --- In [email protected], "tkabushaban" <[EMAIL PROTECTED]> > wrote: > > > > - > > > > > > > > Hi Brenda, > > > > His onc said 300 was the minimun dose, he had some trouble > > > > tolerating 400mg initially so they backed it off---I don't know > > > what > > > > is the best thing. Do you think that the BMB results from > march > > > > saying that 20 out of 20 cells had the translocation means he > was > > > > 100% phillies? This is the question I really have because if > so, > > > > than the gleevec is working pretty well for him again if he is > > down > > > > to 16.8% in about 5 months. What do you think? Teresa > > > > > > > > -- In [email protected], "Brenda Morelli" <[EMAIL PROTECTED]> > > wrote: > > > > > TKA, > > > > > From reveiwing below it looks like he's responding, the only > > > thing > > > > is > > > > > most feedback from the specialists is to use a minimum dose > of > > > > 400mg, > > > > > I beleive you said he was on 300mg. > > > > > Take care and I hope he goes back in to complete remission > soon > > > > > Brenda > > > > > dx 5/04 > > > > > pcru 5/05 > > > > > > > > > > --- In [email protected], "tkabushaban" <[EMAIL PROTECTED]> > > > wrote: > > > > > > --- In [email protected], [EMAIL PROTECTED] wrote: > > > > > > > Hi: > > > > > > > > > > > > > > Where do you live? Why did your husband go off the drug > > for > > > so > > > > > > long? I had > > > > > > > a big bruise and I have low platelets, and I've been off > > for > > > a > > > > > few > > > > > > days. The > > > > > > > doc will put me back on ASAP. Of course, I don't mind > > being > > > > off > > > > > > for a short > > > > > > > time, but I know that can't last as I'd soon be > fullfledged > > > > CML. > > > > > MJ > > > > > > > > > > > > > > > > > > HI, > > > > > > It was a mistake to be off the gleevec, we know that > now, > > > our > > > > > > previous oncologist took him off and we trusted that, > > > > unfortunately > > > > > > at that time he also quit taking our insurance so we began > > > > looking > > > > > > for a new onc, of course thinking he was cured the whole > time > > > so > > > > we > > > > > > did'nt think it was a huge hurry or anything. We should > have > > > > > checked > > > > > > around and then we would have known not to ever stop the > > > > gleevec. > > > > > > anyway the new onc is nice but I am not so trusting > anymore. > > > > > that's > > > > > > why I pushed so hard for the FISH. I feel I have to > monitor > > > the > > > > > > progress now and not just be passive in this. 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