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New Sub Forum for CML

CML Resistant CML CML patients CML caregivers

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Poll: New Sub Forum for CML (48 member(s) have cast votes)

Would it be helpful to start a NEW sub forum for CML patients whose medication is not working or going through a resistant CML?

  1. Yes (10 votes [20.83%])

    Percentage of vote: 20.83%

  2. No (36 votes [75.00%])

    Percentage of vote: 75.00%

  3. Maybe (0 votes [0.00%])

    Percentage of vote: 0.00%

  4. I don't know (2 votes [4.17%])

    Percentage of vote: 4.17%

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#41 IRC Admin

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Posted 15 September 2015 - 01:01 PM

To all the respondents of the CML discussion board regarding the possibility of a sub forum for the resistant and refractory folks:


Thank you for taking the time to share your thoughts about a possible sub-forum on the CML discussion board.  As your moderator, I read all the posts and thank you especially for your very thoughtful responses here, on both sides.  This is the largest group on the discussion board and it seems the strength is in the willingness of so many to share your experiences, considerable expertise and yes, your humor.  Your questions and comments have expanded my understanding of CML and the many issues confronting CML survivors and their caregivers.


At this point, we will maintain just one CML forum and I think the suggestion to start new topics (sub-topics) as needed is the key.  If the topic title isn't relevant, it can simply be skipped. Also, we are looking into the possibility to enhance the search function, so that one can search by the post title and the keywords in reply. We will keep you updated as we have any news.




#42 Buzzm1


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Posted 15 September 2015 - 03:42 PM

we are looking into the possibility to enhance the search function, so that one can search by the post title and the keywords in reply. We will keep you updated as we have any news.




appreciated, I think we would all benefit greatly from an advanced search function containing the option to search thread titles only.  


Thank you Pirlo,


For the benefit of yourself and others please add your CML history into your Signature


02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive


2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17


At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  


In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  


longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.


Cumulative Gleevec dosage estimated at 830 grams


Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  


Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

#43 Tedsey


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Posted 16 September 2015 - 11:55 AM

My Mrs is one of the silent sufferers.  A forum full of people that are stopping their TKIs, reducing their TKIs, enjoying another round of golf, or just all around having a great day is not a place she wants to go.  It's unfortunate that those that post the most are generally those with the least problems, and they can, note I said CAN, minimize some of the things that some people really have a whole bunch of trouble with.   If someone we know that knows her situation were to come here for a little insight they would question her situation greatly compared to the average poster on the internet.


It is difficult to be happy as we are apparently right up on the verge of a cure, right?  That "cure" is only for some.  Some folks stop the TKI for only a week and get some numbers in an otherwise vacant PCR.  That really is a have and have not situation, like it or not.


Just some experience from a caregiver, and maybe some insight as to why some might want such a thing and why some others just don't participate.  Nobody wants to be the Debbie Downer at the cafeteria table.



Dear rct,


I've been dx with this ba#!@^* for almost 6 years.  My experience has not always been rosey and still isn't.  I feel we are all in this together good and bad (if not for just sharing the same lousy acronym in our blood).  I am always happy to hear when people are doing well and rejoice in it.  On the other hand, I want to be there for those who struggle.  I feel this forum should encourage all.  It is so vital that we hear all sides.  I don't think a cure is possible otherwise, no matter how elusive it seems.


For what it is worth, I am always wishing you guys the best and for years I have learned from and valued all that you have posted.



Also tagged with one or more of these keywords: CML, Resistant CML, CML patients, CML caregivers

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