28 replies to this topic

[0vercast]

They're right about the doctor scaring you for no good reason — they like to do that sometimes.  A BMT should not even remotely be a part of the discussion at this point.  If you're headed in the right direction, and you are, a BMT is not a reasonable course of action.  My understanding is that if you're not showing any signs of acceleration and your numbers are dropping, you are in little-to-no danger, certainly not enough to warrant a dangerous BMT.

[0vercast]

The docs I've spoken to feel that CCyR is an appropriate 12-18 month goal per current guidelines.  Getting you down to 10% by the 3 month point seems quite optimistic, not to mention unreasonable.

[alexamay09]

Thanks Overcast. It is so counter-productive to cause a patient fear and stress. This thread has given me great comfort and a determination to resist BMT.

kind regards

Alex

[triciad]

Hi Alex-

Good advice from a lot of knowledgeable people on this post.  Eight years ago I was in the same situation as you:

Diagnosis Mar 05 - 95% FISH

June 05 - 63% FISH

Sept 05 - 46% FISH

Nov 05 - 41% FISH

Feb 06 - 35% FISH Switched from Gleevec to Sprycel

I eventually reached 0% FISH and cyto over the next few years.  I am now on Tasigna and my PCR is .074%.  I've had ups and downs through the last eight years but a transplant was not much in the discussion at all unless I brought it up.  Someone told me long ago that even turtles win the race (Thanks, Anjana!  )  You will too!

Tricia

[CallMeLucky]

The three month target is based on newer studies that showed people who got to a major cytogenetic response by 3 months did "better".  "Better" may be a bit subjective, as far as I know overall survival and progression free survival were the same.  But I am not that knowledgeable about it.

I am not a doctor and I certainly will not dispute what they say, but I find it a bit convenient that these new thresholds coincide with the newer agents coming to market and the pending Gleevec patent expiration coming up.  If you were a majored drug manufacturer and you wanted to convince people that they needed to take your newer more expensive drug rather than your older drug that is now available in generic form, you would need a good reason.  If you were able to show through studies that getting the MCyR faster (which your new drug does) potentially demonstrates a better outcome, I think that is something you would be pushing to anyone who would listen.

I don't want to go conspiracy theory here but there are real economic incentives that drive treatment paths.  Now how doctors interpret that information and use it to drive treatments can vary.  Since their economic incentives are different, for the people who fall into the outlier area certain liberties and generalities may be applied that are not accurate.

You are an individual, not a statistic, so 87% vs 97% is not something you should be losing sleep over since it likely is not relevant to your individual situation.

[alexamay09]

Wow, thanks Tricia.  All of this gives me hope for the future.  Thank you so much. I start Sprycel tomorrow and have just gotten over the worst of the SE's from Nilotinib so I hope I don't have too many effects from the Sprycel!!

kind Regards

Alex

[PhilB]

Having been ignoring my CML for a while I'd missed those 3 month-10% studies so just had fun catching up on them.  They are definitely interesting, but no way would I trust your average doctor to make individual treatment decisions based on them as the published info is way too simplistic for that.

There does seem to be a definite and statistically significant difference between the overall results of the data sets '<10% at 3 months' and '>10% at 3 months'.  The problem is, that despite all the talk of picking the most statistically significant cut off point between the two populations, it is still a pretty random lumping together of widely disparate groups.  Statistically naive doctors looking at that and saying 'if you are above 10% your chance of survival is x amount lower' simply doesn't work.  The over 10% group includes people who have had no response whatsoever or even an increase in PCR.  No way do they have the same odds as someone who has dropped from say 100% to 11%.  Trey is fond of talking about measuring with a micrometer and cutting with a meat axe.  From a statistical viewpoint these guys are measuring with a meat axe.   An analogy would be to look at liver disease vs alcohol consumption.  Let's say we split the population based on whether they had ever had a drink in their life and we found that the 'drinkers' had a 20% higher chance of getting liver disease than the 'non-drinkers'.  That does not mean that taking a single drink some time in your life gives you a big increase in risk, but that's the way people interpret this kind of statistic.  Unless you know how the results are skewed within the drinkers group it really doesn't tell you anything.

Without much bigger data sets and much more detailed analysis we simply don't have a clue where Alex's drop from 80% to 40% puts her in the 'over 10%' group.  On the liver analogy we don't know if she's a glass of eggnog every Xmas or a bottle of bourbon every lunchtime. We don't have enough data on the population and we certainly don't have enough data on Alex.  If you take a Bayesian approach and try to calculate what are the odds of this one specific individual, Alex, doing well given the fact that she has had this one result, then at the moment the answer is almost certainly not much different to what they were before the result ie still very good indeed - and a whole lot better than the BMT odds.

Yes changing drugs is reasonable, yes monitoring closely makes sense, no it isn't the time to be fretting about a BMT.

(Sorry for the rant Alex!)

[alexamay09]

Not at all PhilB.  I welcome your input and it makes a lot of sense.  Thanks!

alex

[Susan61]

Hi Alex:  I wish you the best on your first day with Sprycel.  As you know I have only been on Gleevec all these years, but you can see you have a lot of people who have switched to Sprycel and done very well.  Also, if you  have any side effects just ask someone who might have gone through that particular same thing as you.

    Its great that we have this board to talk to so many others who can relate to what we feel, and get some reliable answers.

Take Care

Susan