70 replies to this topic

[GerryL]

Hi Pin,

Congratulations, wonderful result for you.

[Susan61]

That is fantastic .  I really needed some Good News Today.  Sometimes these drugs can be stubborn before they get you where you need to be.

[Susan61]

Hi  Tedsey:  Great News, and Lucky is right.  You should start a new post, so everyone who knows you can see where you are right now.  Most of us have been through this journey with you with all the ups and downs, and would love to hear your news.  It will inspire those also, who may be struggling and wondering where its all going.

God Bless You

Susan

[Pin]

Thanks all!

[Pin]

Teds, that is amazing news! I feel so unbelievably happy for you!

Yes, as Lucky and Susan say, please share this with everyone. There are lots of people who care about you - And this is big news! As Trey said so beautifully a while back, your story has been rewritten

[hannibellemo]

Teds,  That is truly wonderful news, I am so happy for you!

Pat

[hannibellemo]

Pin, Teds,

I wanted to quote Carolyn Blasdel, Dr. Druker's nurse at OHSU, from an article in a supplement to cure magazine about medication adherence.

"Nonadherence is a growing problem," Says Carolyn Blasdel, a family nurse practitioner at OHSU. "The old paradigm for cancer treatment was a defined, time-limited process, and chemo was given in cycles intravenously. Now, there are many oral medication and the responsibility is completely on the patient to take them or not." She cites a 2009 study published in the journal of Blood, which concluded that up to a third of the patients in the study taking TKIs could be considered nonadherent, with only 14 percent completely adherent. Another study of CML patients, published in the Journal of Clinical Oncology, found that drug adherence tends to decline the longer a treatment progresses.

This study may also take into account those of us who are not taking the recommended dosage, I'm not sure about that. So, of course, I would also be considered nonadherent under that framework.

So in Pin's doctor's defense I would take the stance that he was shirking his job if he didn't ask the question of adherence. If you are interested in the supplement here is the website:

http://www.curetoday...article_id/2062  I find cure to be the most interesting of all the free cancer magazines.

Glad things are looking up for you, Pin, and I've already posted my "atta girl" for you, Teds! 

Pat

[TeddyB]

Great news pin and tedsey

Congratulations to you both!!!!!

[Pin]

Thanks Pat and Teddy

Pat - you are of course correct - I completely agree adherence is very important and that he was doing his job properly by asking - I think the question just really punched me in the guts because I have been so very adherent that the very question of it seemed absurd to me. In his defence, he's not my regular doctor so there's no way he would know this but I think it really poked at my (perhaps irrational) underlying belief that I must be doing something wrong.

Interesting that in that paper they counted people on lower doses as 'not adherent' though.

[Tedsey]

Pat,

Thanks for the post.  It is always good to have that in mind.  I am sure there are undetectable little evil-doers waiting to reek havoc if allowed to increase in number.  And, I am not give those quiescing LSC a greater chance to wake up from eating their own excrement (if you read this, thanks for the "visual" Trey...).   I am so in the habit of my nightly pill-taking ritual, that I will feel something is missing if I let it go, (besides, my little boy won't let me--he uses it a chance to stay up later every night asking, "Mama, have you taken your vitamins yet?"---I take 7 curcumin pills (8g), omega3, iodine, et. al. and it takes a while to get them all down).  The TKI is what is buying me more time on this beautiful Earth with my beautiful family and all my beautiful BIFs.  In some ways, I am so much happier since CML, (although I hate it with a passion), and view human existence as a miracle.  But disease and the thought of an early demise is still terrifying.  As for a cure, all I meant is that the treatment seems close to a cure (and I have to add, for superstitious reasons,---- if it continues to work).  The only thing I may consider is if I can hold PCRU or a very low value for 2-3 years, I may ask to go down to 70mg (dasatinib).  I am still so tortured by the mouth sores.  My HGB is so close to normal last check (if you don't already know this, low iron is one of the myriad of things associated with getting mouth sores).  Since I have trouble reading to my kids,eating and talking, I would like to see if it may be a side effect of the dasatinib.  Lately, I am rarely without a painful sore and my life has not been that stressful (stress is another thing added to the long list of why people get mouth sores, and of course, there is the plain "cancer" reason, which doesn't really explain anything all by itself).  I just pray now for good health outside of CML, no other cancers, chronic or deadly disease, out of control buses, etc.---ever (and the same for all my BIFs).  Always the best to you!  Hope you are feeling well and the PCR values are getting lower!

Pin, sorry, it feels like I am taking over your thread.  I wish you all the best too, indefinitely. 

Teds

[pammartin]

Pin,

sent you PM, Thinking of you

[Pin]

Hi everyone,

Just thought I would share some good news - I got a 'not detected' result on my last test I feel very appreciative of where I'm at now and am glad I can again have tests at 3 months instead of every month! The doctors think it's likely that the herbal medication could have impacted on my results but I realise it's equally possible that it was just a regular (albeit stressful!) plateau.

Thanks for your reassurance Trey (and for invariably being a voice of rationality and correctness ) Also, you were right about my trajectory in the pinwheel galaxy - haha http://community.lls.org/thread/18843

I'm looking forward to having a trip away to celebrate a (year late) honeymoon.

To those of you feeling well, keep it up! And to those of you not feeling so well at the moment - hang in there, we are all here for you. xx.

Pin xx.

Time	BCR-ABL - IS%
Baseline	38.0
3 months	12.0
6 months	0.14
9 months	0.004
12 months	0.0039
15 months	0.013
16 months	0.032
17 months	0.021
18 months	0.01
19 months	0.014
20 months	0.016
21 months	0.026
22 months	0.041

23 months	<0.01
2 years	<0.01
2.25 years	<0.01
2.5 years	0.000

[LivingWellWithCML]

Congratulations Pin!

[GerryL]

Well done Pin, here's to continually being "negative" in a good way.

[jjg]

Great news!

You know the 9 and 12 month results just don't look right unless you were getting them done at a different lab. Your results from 23 months onwards suggest that the PCR resolution is between 3.5 and 4 log i.e. they are not reporting < 0.01 as exact numbers and yet previously you had 0.004. I'm guessing that the 0.004 is actually 0.004 +/- 0.01 (if that makes sense, makes more sense in log reductions).

We celebrated our honeymoon late too and it was especially good. Have a great holiday.

[Pin]

Same lab - For those first couple, the lab technicians gave me the 'exact' numbers for those first two tests under 0.01 (technically they were reported as <0.01). I stopped asking for exact numbers after that because from what I can gather my understanding  is that anything under 0.01 is probably wildly inaccurate anyway!

[Pin]

Also, thanks guys!

[Susan61]

Congratulations Pin:  We all go through mixed feelings at times, but you just have to think about the good that these TKI drugs have been for many of us.  Go celebrate that year late honeymoon, and many more after this one.

Susan

[Tedsey]

What a way to celebrate your honeymoon!  Congratulations!

Tedsey