116 replies to this topic

[scuba]

Well....I did it.  10 hours later, I managed to meet with Dr. Cortes and 5 'fellows' who sat in.  He did tell me that if I had come to him first - or within the first month of diagnosis, he would have put me on Tasigna right away - not Gleevec.  He said Gleevec was fine - and still is fine, but Tasigna is showing dramatic, quick results.  He knew about Tasigna results long before ASCO.  What took patients a year to get to, he is seeing in less than 3 months.  He told me that since I was started on Gleevec with minimal (or no) side affects, he wants to let it go for one more month which will take me to the 3 month mark.  And then do a BMB, and full molecular work-up to see where I am.  If I am responding more slowly than he would like to see, he will switch me.  If I am responding quickly (30% of Gleevec patients according to him respond quickly) he would leave me on Gleevec.

He said there are a lot of trials going on to further enhance treatment for those who don't respond.  He said the key is quick response - zero detectable Ph+ chromosome - which experience informs him leads to a very good long term outcome (no recurrence).  He also said there are lots of cases where low levels persist and lead to very good outcomes, but that those that get to zero within a year have the best outcome.  This is why he was positive on Tasigna - get the Leukemia cell burden down quickly.    He said Sprycell gives a similar result.   He said he would consider me for "cure" trials that are beginning only after the Leukemia cell burden is brought under molecular control.  After that, he said we can look into so-called 'cure' trials.

One final thing - he did say he would switch a patient who is long term on Tasigna (more than a year) and at PCR-U to Gleevec for maintenance because of cost.  Once Gleevec goes off patent protection it will be a battle with insurance companies to use anything else.  That was a side note.

I will meet with my primary Onc and let him know Dr. Cortes' thoughts.  In one month I will have a big decision to make.

Dr. Cortes has good patient rapport.  He listens, explains and is flexible.

[Colleensnana]

I am newly diagnosed as well. On June 8th, I went to our local ER because I was having pain under my rib cage and had been for 2 weeks. I finally could not tolerate the discomfort any longer. Being a nurse I knew that I should have went sooner to be checked as it could have been any number of things. I fully expected the MD to tell me that my ulcer was acting up again or that I had had some cardiac problem. The last thing in the world I expected was to be told that my WBC's were 188,000. I immediately had a Bone Marrow Biopsy and transferred to another hospital 30 miles away for further work up and treatment. The emotional ride began. I was initially given the diagnosis of AML and then thankfully I was given the diagnosis of CML and was in the Chronic Phase. The Philadelpha Chromosone was 98% positive. I am on Gleevec daily. My last WBC count was 5.4. I was so excited. It took a month for it to come down but thanks to the Gleevec it has come down.

[Susan61]

Hi Colleen:  So glad you got the right diagnosis and started on your treatment.  Your doing good according to your numbers.  Hope you continue to do well, and hope you keep posting to share with us.

[Susan61]

Hi:  I agree with Pat on this thread.  There are so many different subjects going on under M.D. Anderson story, and nothing to do with anyone taking their first dose of medication.

[scuba]

I don't know how to change the thread ...

I am the one who went to M.D. Anderson however and it is related to my "first dose" - so in that sense it is a chronology.

I am two months into this odyssey ... and it feels like years already.  I am eager to find a 'groove' that works for me.  My second Onc., Dr. Cortes in this case, would have had me start on Tasigna right away.  That's a bummer.  He said since I am two months in - best to go another month and evaluate the progress.  If my progress is similar to Tasigna (and 30% of new Gleevec customers - sounds better than patients - do get a similar 'Tasigna' response) then he may just keep me on it.  He feels strongly that getting FAST response is key to long term success.  All of the studies show that those who show undetectable Ph+ Chromosome within the first 9 months to a year have no progression. 

Reality is that drugs are coming fast in the pipeline that even if progression recurs - there's a drug for it.  It does seem that Gleevec is easy on the system.  I don't have any side affects apart from the fact that I 'sense' a toxic substance in my body (brain fog).  The lack of side affects leads the Onc's to leave well enough alone I guess.

Tasigna scares the hell out of me.  Get food to close to it and you drop dead of heart failure.  Wonderful.

[Tim52]

Michael

In case you haven't seen this information, you might want to look at the Archived Leukemia Teleconference transcripts that are availble thru LLS.

These are listed under the National Education Programs under Disease Information.  http://www.leukemia-...?item_id=556138

There is one in here that Dr Cortes presented Sept 15, 2009.   http://www.leukemia-...1Transcript.pdf

And there are a couple from Dr Brian Druker, the main man behind the development of Gleevec.

Some of these have Audio or webcast versions available.

Tim

[CallMeLucky]

Michael - I agree with what you are saying and also had back an forth feelings about Tasigna as a first line treatment.  It is interesting Dr. Cortes is going with it as first line.  Dr. Berman at Memorial Sloan told me when we met that she had recently had a call with a number of CML specialists to discuss what they were going to recommend as first line treatment for newly diagnosed CML.  She said that while the Tasigna results were very encouraging, the consensus was that Gleevec would still be the recommended first line treatment for most people based on having a decade worth of history with the drug.  Of course each case needs to be handled individually and different doctors will have different opinions.  In my case I could tell she was being more conservative and while half of me didn't like that, the other half of me did.  My wife was also much more in favor of the Gleevec.  Her reasoning was that there was history with it, most people did well and I had a good chance of managing the disease on it.  She felt the unknowns with Tasigna were exactly that "unknown".  Yes the study showed it got people into "remission" faster, but what happens over time, no one knows yet.  Now my personal feeling is Tasigna will be fine over the long run the same as Gleevec, but the points are valid.  At my age and my current health level, no one saw the need to take that bigger step.  I can switch to Tasigna in the future if I need to and that is actually going to be a conversation at my next visit to understand at what point would she say okay things aren't happening fast enough with the Gleevec so we will switch.  LIke you, so far Gleevec side effects have been reasonable, although I have only been on for about a week and each day brings a slight variation.  The interesting thing is that it doesn't seem to be cummulative.  The side effect I had yesterday is different than the one I have today and has been the case each day.  Its an interesting new life.

Best wishes

[hannibellemo]

Michael,

I'm sure you want others on this site to benefit from these discussions so whenever you want to start a new discussion topic you go to the main page of 'Living with CML'. On the right there is area called "Actions" and under that  "Start a Discussion"

You just post your discussion title and go from there.

Pat

[Colleensnana]

How often do we have to have Bone Marrow Biopsies? Of course my first one was the day of the Diagnosis but when can I expect the next one to be done?

[CallMeLucky]

If you are newly diagnosed, I believe it is at three months, at least I think that is what my doctor told me the other day.  Someone please correct me if I am wrong.

[SunNsand]

I was diagnosed 17 mths. ago. I had a BMB at diagnosis, 6 mths. and one year which I think is the protocol.

SunNsand

[CallMeLucky]

I stand corrected, I went back and checked my notes, my doctor did say at 6 months.

[starlago]

Michael,

I'm curious why Dr. Cortes said he would have started you on Tasigna immediately.  I am a patient of Dr. O'Brien at MDA (clinical trial) and, presented at diagnosis with no prior medication, was put into a "dasatinib (SPRYCEL) as first line defensel" trial.  At my first visit, asked many questions as to differences between sprycel and tasigna, but was recommended for dasatinib trial.

[Trey]

At the time Michael started treatment, Tasigna was not authorized by the FDA as a first line CML drug, so to start with Tasigna would have required a clinical trial (if available).  Now it is approved as a first line treatment.  Sprycel is still not authorized as a first line CML treatment (except by clinical trial).

I would conjecture that Sprycel is considered by most of the best CML Oncs to be the strongest overall CML drug.  That does not mean they would start everyone on it, since there is much more data available on Gleevec, and most Oncs like to stick with the safe and effective approach, rather than the strongest drug approach.  Tasigna is now the strongest FDA approved first line CML drug.  But most people will continue to start on Gleevec for quite a while.

[starlago]

Thank you for the perspective.  Apples and oranges.

[Michael]

I started on gleevec but had a bad allergic rx (erythema multiform). Cortes then put me on Sprycel 70mg. Had pleural effusion and he reduced to 50 mg. I believe he was worried about rashes associated with Tasigna.

Good luck, michael

Sent from my iPhone

[Trey]

Wonder how we have 2 people with the same Login name "Michael"?  Thought that was not possible, which is why we have a "Tedsey" named Tracey.  Just curious.

My second observation is that it seems to be the younger folks here who are "new posting thread challenged".  This one has more twists and turns than Lombard Street.  (Read new title).  Get with the Hi-Tech era, and try to keep up with us older folks.....

http://www.google.com/images?hl=en&q=Lombard+Street&um=1&ie=UTF-8&source=univ&ei=70VDTPHHIoH68Aa_uaXLDw&sa=X&oi=image_result_group&ct=title&resnum=4&ved=0CEIQsAQwAw