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#1 chivonne

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Posted 15 May 2013 - 07:29 PM

Hi everyone,

First I wanted to say how helpful I have found everyone's postings.  I have often had questions and was able to quickly find answers because of the outpouring of answers to people on this site.  Its pretty amazing.  I now have a few specific questions that I was hoping to get some feedback on.

My husband was diagnosed with CML back in 9/12.  While he was shocked at the diagnosis, he hadn't been feeling great for a couple of months so had gone to the doctor for some answers.He has been taking Tasigna since 10/12.  He had some trouble with his blood counts in the beginning (particularly low platelets) so the dose was adjusted at some points but he has been tolerating the standard dose for at least 4 months now.He has gone through 4 pcr/fish tests and I think the doctor (a CML specialist) has been inconsistent in her advice regarding the results and was hoping for some additional opinions.

At Diagnosis:

9/20/12

Bone Marrow Biopsy:- from hematologist in local CT hospital

Positive for BCR/ABL rearrangement (95% of cells) consistent with chronic myelogenous leukemia (Major breakpoint 3.088%, Minor breakpoint .002%)

FISH - a positive hybridization pattern, without loss of ASS, was present in 95% of the cells scored.

Unable to obtain smears so could not evaluate the number of blasts.

9/24 - follow up visit with CML specialist and results are based only on blood draw with a different lab from the 9/20 results.  All subsequent results are from this lab.

Positive for BCR-ABL (P210) transcripts, indicating presence of CML-type Philadelphia chromosome.  After normalization with a positive control cell line K562, the level of positivity for BCR-ABL is approximately 39.1%

FISH Analysis: Ph positive cells: 98%; ph negative cells 2%

Took Hydroxyurea for about 1 weeks prior to official report (very high wbc count at initial visit - around 450k) and then started Tasigna.

12/17/12

Positive for BCR-ABL (P210) transcripts, indicating presence of CML-type Philadelphia chromosome.  After normalization with a positive control cell line K562, the level of positivity for BCR-ABL is approximately 7.2%

DR ADVICE: Expected much more of a decrease during this period.  1 log reduction is not the expected or desired response.  Other doctors would switch medicine at this point but he should continue with Tasigna for 3 more months. 

FISH Analysis:  Ph positive cells: 2.4%; ph negative cells 97.6%.

DR ADVICE: The FISH test came several days after the PCR.  The nurse then conveyed the doctor was pleased with the results and not to worry.  We were completely confused at this point.

3/18

Positive for BCR-ABL (P210) transcripts, indicating presence of CML-type Philadelphia  chromosome.  After normalization with a positive control cell line K562, the level of positivity for BCR-ABL is approximately .85%

DR ADVICE: Pleased with BCR-ABL results even though its only another 1 log reduction.  When asked about initial concern that results were not dropping fast enough, dismissed concern.  Forgot to order FISH test but would run that based on blood drawn at visit.

4/1

FISH Analysis: ph positive cells: .6%; ph negative cells: 99.4%

DR ADVICE: Nurse calls with results indicating doctor is not pleased that this was not 0.  PCR results are not addressed and requests follow-up test in 6 weeks. At the time of this call, we are completely puzzled because at the last set of results, PCR seemed to be the focus of concern.  This time, with another only 1 log reduction, she is not concerned but with a FISH test of .6%, the concern returns.

5/1

Fish Analysis: ph negative cells: 100%

Positive for BCR-ABL (P210) transcripts, indicating presence of CML-type Philadelphia chromosome.  After normalization with a positive control cell line K562, the level of positivity for BCR-ABL is approximately .143%

DR ADVICE: Pleased with FISH test.  Not thrilled with PCR.  Again, indicates that some doctors would switch medicine at this point but since numbers are dropping, is comfortable waiting another 3 months.  Provides no guidance on overall prognosis based on rate of response and indicates will be attending a conference and will discuss this less than desirable response rate.  Does not think there is a mutation as he has responded to the medicine.

The side effects from Tasigna have declined dramatically for my husband (particularly in the last month of so).  The particularly bothersome side effect of a "fuzzy head" has basically disappeared after several months of being present.  It at all possible, he would like to remain on Tasigna but also wants to achieve the best overall outcome.

QUESTIONS:

1.  Does anyone know how quickly the optimal time to achieve a 3 log reduction on Tasigna?  The initial local doctor indicated 1 year.  The CML doctor has said that is incorrect but hasn't provided any other guideline.

2.  Based on my very limited knowledge, it seems he is moving in the right direction at a reasonable rate and should hold out for another 3 months.  Would others be pushing for a drug switch at this point?

3. Is there a correlation between how quickly the log reductions occur and (1) the overall prognosis and (2) the likelihood of the drug continuing to work long term.

Any thoughts would be very much appreciated! 

All the best,

Chivonne




#2 Trey

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Posted 15 May 2013 - 08:39 PM

Your husband is doing great.  Your Onc has made you both feel like the result has not been excellent, but indeed it has been excellent.  He achieved CCyR (zero FISH) in 8 months, and essentially the April FISH was also negative due to the 1 - 2% error rate in FISH.  So the Onc's inputs are uninformed to say the least.

Your questions:

1) 3 log reduction (MMR) goal is 18 months on any drug.  Anything better is gravy.  CCyR goal is 12 months and your husband achieved it in 7 - 8 months.  Excellent response.

2) There is absolutely NO REASON to switch drugs.  He is doing great.  Your Onc's knowledge of CML is underwhelming.  Sadly, not unusual. 

3) In general terms, yes to some degree.  But most do well regardless of speed of response due to the availability of 5 drugs. 

Overall, your husband is doing great, and his Onc is doing poorly. 



#3 chivonne

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Posted 18 May 2013 - 03:18 PM

Thanks Trey.  I truly appreciate your opinion and thoughts.  They give me a great deal of comfort. 

Thanks,

Chivonne



#4 chivonne

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Posted 09 July 2013 - 08:44 PM

I'm back again for some more advice and a doctor recommendation. My husband's latest pcr went up slightly (still a 2 log reduction). His doctor feels strongly that he should switch medicines because he is 40 and for someone that age, she wants a quick and deep response. She said she wanted mmr by 6 months but 9 months at the latest. Ultimately, she wants him to be pcru. According to her, doctors would have already switched his medicine.

He asked if he could think about it which she agreed to so he is getting retested in a couple of weeks.

2 questions:

1. Has anyone heard that a faster response is expected for younger people?  Is this the current guidance?  Any insight would be appreciated.

2. Can anyone recommend a doctor in the NY area for a second opinion. He is seeing a doctor at Sloan so other suggestions would be very much appreciated.

I think it's worth getting another view before making this decision.

Thanks so much!



#5 Trey

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Posted 09 July 2013 - 09:53 PM

Given his 2 log reduction in a relatively short time, there is nothing wrong with switching, but also nothing wrong with not switching.  If he is pleased with the side effects profile, that is one argument for not switching, but Oncs don't care about side effects.  Oncs may want an "optimal" response rate, but most people are average by definition.  With TKI drugs, average people do well. 

I have written about response plateaus, especially with Tasigna.  He may have achieved one early:

http://community.lls...e/159964#159964

I have seen no advantage regarding age and speed of response.  The primary variables are unrelated to age.  We are all different and respond at different rates.  Not all drugs work the same for everyone.  A different drug may work faster, or maybe not, but the only way to know is to try it.  There is no magic algorithm. 

I'm not sure a second opinion is important in his case, but your choice.  He is doing well, so it is more of a coin flip than a second opinion issue.  TKI drugs just require a test drive to see if they suit an individual patient better than the existing one.  But if the current one works well then switching has some amount of risk, both response rate and side effects wise. 



#6 CallMeLucky

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Posted 09 July 2013 - 10:17 PM

Part of the problem you have with "2log reduction" is that MSKCC's lab is not International Scale so you don't have a definitive idea of where he stands.  In your case you are following trends, the numbers went down then they went back up.  Dr Berman is not one to react to slight changes she knows not to jump too soon and is conservative in her approach.  She is a very qualified CML Dr and if she is saying it is best to switch then it probably is.  That being said, it can be a challenge working with her at times when things are not going smoothly and sometimes getting a clear picture of where you are can also be difficult.  If you did want to get a second opinion you could go uptown to Columbia Presbyterian and see one of the Leukemia Dr there.  About 6 mo ago a number of Doctors (5 I think) left MSKCC and started a new leukemia practice at Columbia.  All of the Doctors are excellent.  Dr Jurcic is one of the doctors and he is highly recommended.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#7 chivonne

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Posted 09 July 2013 - 10:41 PM

Thanks so much for both of your thought. I'm really struggling because I haven't seem anything about needing to reach mmr in 6 months so sort of feel like we are operating in a gray zone. At the same time, i recognize that his doctor is highly regarded but frankly the communication from her and the  office generally is far short of ideal. I never feel like my husband has full information after leaving any appointment which I find frustrating (he is not nearly as bothered which is probably why that happens!).

One more question -  does your opinion change if the switch is to ponatinib?  Sprycel is not an option for him because of a mild clotting issue he has which apparently raises some concerns.  Given how recently ponatinib was approved, it just makes me a little nervous about what the long term effects could be.

Thanks again. Truly appreciate your views.



#8 CallMeLucky

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Posted 10 July 2013 - 08:56 AM

I think you would want to know why he is not responding ideally before jumping to ponatinib.  I would also question why not try bosutinib.  I'm surprised Dr. Berman is saying MMR is needed by 6 mo, if that is her opinion then it is a newly formed one that she did not have in the past.  I've read some recent studies where they are saying that rapid response is an indicator of a good long term prognosis.  But understand that it doesn't necessarily mean if you don't have a rapid response things are going to be bad for you.  It is also not clear to me if forcing a rapid response is the same as just having a rapid response.  What I mean by that is some people just have a rapid response and that is an indicator of good long term prognosis.  If someone is not having a rapid response and you force it with more powerful drugs, it is not clear to me if that makes the prognosis any better.  In other words is just forcing a fast response what makes the prognosis good or was it the fact the person's disease initially responded well, which would be a factor that can't be controlled.  Overall you want to get to MMR as quick as you can.

If it is feasible for you, I would call Dr. Jurcic at Columbia and go see him.  Quite possible he will offer the same treatment plan, but I think that you will feel more comfortable with the decisions you make after talking it through with him.  He is known for taking his time with his patients and explaining thing well.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#9 Trey

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Posted 10 July 2013 - 10:07 AM

Sprycel is the TKI most often associated with platelet dysfunction:

http://bloodjournal.....expansion.html

Ponatinib (Iclusig) has a similar platelet dysfunction issue to Sprycel:

http://www.haematolo.../97/9/1444.full

These two TKI drugs would not usually be recommended by docs if this is a serious issue for him, so a switch to Bosutinib or Gleevec would be the remaining options.  However, note that these "issues" are often over-blown.  We have some "bleeders" who switched to Sprycel and are doing just fine.  So I would not rule out these drugs as options if they ever become more necessary.

Overall the log reduction issue is not nearly as accurately measured as  CCyR (zero FISH), which he has achieved.  You seemed to indicate that he changed labs and the log reduction measurement started after taking hydroxyurea (I believe that is what you meant in your original post); if that is true then there is not an accurate starting point from which to measure.  So he may be doing better than the log reductions from the second lab indicates.  This personal log reduction vs standardized log reduction can be hard to figure out sometimes, but the personal log reduction is a more accurate measure of individual response rate given that we all start at different points.



#10 chivonne

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Posted 11 July 2013 - 10:12 AM

Thanks again to both of you.

Yes, he did change labs and the log reduction measurement started after taking hydroxyurea for about a week.  I like the idea that he may be doing better than the labs indicate

My understanding from his doctor is that Tasigna is supposed to result in a much faster response than Gleevec and so when his very first test results at 3 months (during which there were some breaks because of very low platelets) showed only a 1 log reduction, she was not happy and already considering a switch.  At 6 months, with a 2 log reduction, she seemed happy and then was focused on the FISH test which was not at 0.  That is part of the frustration - I feel like we are getting inconsistent messages and with no background in medicine, it makes me crazy.  I also find it incredibly frustrating that it took 9 months to get insight into the doctor's ultimate goal and the timetable for that goal.  At no point prior to this appointment, did she say she was expecting MMR at 6 months (even at the 6 month appointment).  Its very possible that protocols are changing or new guidance is being released so maybe her view has changed but it would be nice if that was shared with us too!

In any case, thank you very much for the insights, sharing your expertise and also the recommendation.   We will definitely pursue the second opinion simply to put my mind at ease.  I recognize this is a forever journey and just psychologically think its important to be totally on board and confident in the plan that is being established and the goals that are being set. 



#11 Tedsey

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Posted 12 July 2013 - 01:41 PM

It is a good thing you are trying hard to understand this.  It can be complicated, but most of it is "learnable".  This board is a great place to learn.  I have found that there are some oncs that have their own timetables despite what the NCCA guidelines say  for CML.  Maybe it is because oncologists are used to the typical chemo protocols and let that cloud their thinking?  Not sure why.  I think getting a second opinion from an onc who communicates well is a fantastic idea.  For long term care, it is vital that you feel comfortable with your doctor.  Don't settle.  You don't have to. 

All the best,

Tedsey



#12 Tedsey

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Posted 12 July 2013 - 01:46 PM

Opps, did I say NCCA?  Man, what a dope!  If our only cares in life could be about the National Collegiate Athletic Association (just kidding, that's NCAA).

Anyway, I meant NCCN http://www.nccn.org/.../cml/index.html

Sorry,

Teds



#13 CallMeLucky

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Posted 12 July 2013 - 02:09 PM

The irony here is that Dr. Berman is one of the authors of the NCCN guidelines.  That's why I thought it was strange for her to say 6mo MMR, but I guess her opinion is changing.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#14 Tedsey

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Posted 12 July 2013 - 02:22 PM

Talking about irony, another doctor's opinion I would have trouble trusting is Al----.  She is also on the list.  Go figure.  In the past, I have been on "lists" because of my job position.  A lot of the time, and sadly so, it is a lot of mambo jumbo that you have to come up with as a group because it is asked or demanded of you by a higher authority.  The document you create is for others not in the know to read and understand.  Hate to think that this guideline is of a similar ilk.  Sadly, I cannot say I was always "vested" in what I helped to write or had it memorized.  I think this is esp. so if everyone in the group is not physically present to discuss what is going to be written and published.  So, like most things, we have to take it for what it is worth and hope we can sort out the best info from the best informed (and lest I forget, those who care).

It appears our discussion group has great value for the general CML public.



#15 chivonne

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Posted 16 July 2013 - 04:36 PM

Thanks so much for your thoughts and especially the link.  I had not seen these guidelines and then later saw Trey advise that the guidelines are expected to be updated soon.  I wonder whether the updated guidelines will have significantly different objectives that are more consistent with the advice we are getting.  I guess we will see soon...

In any case, we have an appointment with Dr. Jurcic later this month.  If nothing else, I hope to come away more educated.

All the best,

Chivonne






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