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"My Introduction" and "6 Month PCR Results"


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#21 thatguy

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Posted 26 April 2016 - 05:04 PM

Welcome to the new life. I was diagnosed similarly, 13 mos ago at age 28 also. My trends were significantly higher at each pcr, than you guys on here with -5,869% i.s @day 3... You're both doing excellent. Stay vigilant, adhere to dosing, exercise (for endorphin release, if nothing else) and try not to get pushed into thinking you can't communicate about your disease/concerns with your gf. I don't think it's kosher to have to bottle anxiety with someone that should exhibit empathy. But, that's me. Generally from experience and my research, that pcr slope starts steep and levels off, you carried a lot of momentum far, and quick. Be optimistic, because your tests SAY you should be.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#22 kat73

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Posted 26 April 2016 - 05:30 PM

John - You're doing what you feel you need to do right now, reacting the way you need to, and coping in your own way; your way is just different from GF's.  You do the research and crunch numbers; she trusts and has faith and figures the best way to cope is to move on and (to her way of thinking) live life.  Just different coping mechanisms right now.  And needs change.  We've all fallen into the trap of trying to do or be what we think we SHOULD, but in the end that doesn't work out.  Much better to just keep feeling honestly, and oh yeah, keep talking to each other.

 

Liamsdad - I nominate you for First Prize for Origin Story (or, How I Found Out I Had CML).  Being treated for flesh-eating bacteria caught while jetskiing puts you definitely at the top of all our stories!


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#23 r06ue1

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Posted 27 April 2016 - 06:03 AM

Thanks! I am on Sprycel 100mg. I remember reading your 6 months results of .166 when you posted them and thinking we had a similar trend between initial PCR and 3 month PCR. I was hoping my 6 month PCR would be as good as yours but no such luck :\

Don't worry about that, just take the medicine and get to MMR, after that you can worry about getting to CMR and PCRU.  lol


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#24 JohnFromChicago

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Posted 27 April 2016 - 10:12 AM

Hi, John.  I'm a bit older than you, 55, but was also diagnosed in October 2015 as a result of contracting flesh eating bacteria while jet skiing in Melbourne, FL in July and my infectious disease doctor was concerned when my white count did not go down after treatment. Logically, I know that it is so early in on this but I am also anxious about my 6 months PCR test results - I had the blood drawn last Thursday so any day now I should hear something.  I was IS 105% at start of treatment, and 5.6% at 3 months so while we are both doing great, I hope when you compare you can see that your numbers are awesome!  I'm on Gleevec 400mg and have had many annoying side effects from water retention issues, gastro, nausea, muscle cramps, bleeding eyes, rashes, night sweats, intolerance to cold, etc, etc, but overall I still am able to get to the gym or run 5 miles every other day.  My doctor asked if I wanted to try another med but since I was responding so well to Gleevec I decided to stick with it until necessary to switch.  

 

Anyway, I've been lurking around here for 6 months as well and I can't thank this group enough for keeping me sane.  The solid information and humor from everyone here has meant so much to me - just knowing that there are others out there who get it! 

 

Wow contracting flesh eating bacteria leading to a CML diagnosis has to be the some of the rarest combination of events. Like Kat said "First Prize for Origin Story". Good luck with your 6 month PCR results, I'm sure they will be great. I know the waiting is the worst part. Mine took 5 days this time it was a very very long 5 days. Sorry to hear you are having so many side affects I have had a few strange suspected side effects twitching, chest tightness, headaches, ect. Luckily none have lasted more than a week or so. Now anytime I have a strange suspected side effect I try to just assure myself it will go away soon. I like to run too it helps with my anxiety. I wish I had time to run 5 miles a day still, I ran track in highschool. Now I just try to get in 2 miles twice a week. I also lurked for about 6 months before posting anything. I feel like I was just sitting in the corner watching a group of people converse and finnaly got the confidence up to say something haha.


Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg

 

0 Month PCR = 87% 

3 Month PCR = 1.2% 

6 Month PCR = 0.64% 

9 Month PCR = 0.26% 

12 Month PCR = 0.21% 

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.051%

24 Month PCR = 0.047%

27 Month PCR = ?.???%

 


#25 JohnFromChicago

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Posted 27 April 2016 - 10:47 AM

Welcome to the new life. I was diagnosed similarly, 13 mos ago at age 28 also. My trends were significantly higher at each pcr, than you guys on here with -5,869% i.s @day 3... You're both doing excellent. Stay vigilant, adhere to dosing, exercise (for endorphin release, if nothing else) and try not to get pushed into thinking you can't communicate about your disease/concerns with your gf. I don't think it's kosher to have to bottle anxiety with someone that should exhibit empathy. But, that's me. Generally from experience and my research, that pcr slope starts steep and levels off, you carried a lot of momentum far, and quick. Be optimistic, because your tests SAY you should be.

 

It is nice to hear from someone my age also dealing with this. It sucks that we both got stuck with this at such a young age. I like to exercise too I lift weights 3 days a week and do cardio 2 days a week. I carry my gym bag with me to work every day since I walk to work and then to the gym after work. I actually feel like I have made more progress in the gym since I was diagnosed I have put on 10 pounds (hopefully muscle) and I am lifting heavier. I feel like this is a direct result of me eating a lot healthier since I was diagnosed. During the week now I pretty much only eat oatmeal, bananas, lean ground turkey,  egg whites, quinoa, spinach, greek yogurt, rice, chicken and almonds. We eat out on the weekends but now I find myself ordering more healthy meals even on the weekend. I had to inform some of coworkers at my diagnosis just because I could not make my doctor appointments and lab tests outside of business hours. My coworkers think I should be at home resting and they think I am doing myself harm by going to the gym and working out. I know this is not the case at all but it is hard to explain to them I still have cancer and still have to go to the doctor visits occasionally as well as for lab tests (EKGs, Chest X-Rays, Blood Tests)  which I am grateful have always come back normal and for my liver enzymes and such in range. They just don't understand that I can still do everything I was doing before I was diagnosed. Now that I have some scheduled vacation days coming up (actually Las Vegas this weekend with my GF) I find myself trying to schedule my lab tests and appointments during lunch so I can sneak out and back in from them without anyone realizing I had an appointment, as absurd as that sounds. Luckily my office is about a 5 minute cab ride from the hospital I go to for my appointments and labs and I can be back in less than 45 minutes.


Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg

 

0 Month PCR = 87% 

3 Month PCR = 1.2% 

6 Month PCR = 0.64% 

9 Month PCR = 0.26% 

12 Month PCR = 0.21% 

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.051%

24 Month PCR = 0.047%

27 Month PCR = ?.???%

 


#26 thatguy

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Posted 27 April 2016 - 07:44 PM

It is nice to hear from someone my age also dealing with this. It sucks that we both got stuck with this at such a young age. I like to exercise too I lift weights 3 days a week and do cardio 2 days a week. I carry my gym bag with me to work every day since I walk to work and then to the gym after work. I actually feel like I have made more progress in the gym since I was diagnosed I have put on 10 pounds (hopefully muscle) and I am lifting heavier. I feel like this is a direct result of me eating a lot healthier since I was diagnosed. During the week now I pretty much only eat oatmeal, bananas, lean ground turkey, egg whites, quinoa, spinach, greek yogurt, rice, chicken and almonds. We eat out on the weekends but now I find myself ordering more healthy meals even on the weekend. I had to inform some of coworkers at my diagnosis just because I could not make my doctor appointments and lab tests outside of business hours. My coworkers think I should be at home resting and they think I am doing myself harm by going to the gym and working out. I know this is not the case at all but it is hard to explain to them I still have cancer and still have to go to the doctor visits occasionally as well as for lab tests (EKGs, Chest X-Rays, Blood Tests) which I am grateful have always come back normal and for my liver enzymes and such in range. They just don't understand that I can still do everything I was doing before I was diagnosed. Now that I have some scheduled vacation days coming up (actually Las Vegas this weekend with my GF) I find myself trying to schedule my lab tests and appointments during lunch so I can sneak out and back in from them without anyone realizing I had an appointment, as absurd as that sounds. Luckily my office is about a 5 minute cab ride from the hospital I go to for my appointments and labs and I can be back in less than 45 minutes.


Good to hear. I had similar results with my cardio after diag. I was lifting mostly prior to diag, and avoiding cardio as much as possible because I got winded so badly. After tki introduction, (I feel) things are much better, specifically lung capacity and muscle fatigue-(maybe due to my previous screwed up blood chemistries that I was unaware of)...it really sucks mentally man, but in all honesty you're inevitably going to acquire a deeper appreciation of this life and what other people have to deal with, in worse situations. "How cancer bettered my life" - I'm going to write a book. Lol. It's melancholy optimism, but as much as I wish I didn't have to think about this disease and the unknowns, I feel like it's given me a significant boost in personal growth, probably unachievable while in good health. I was diagnosed without having any life insurance policy, and I have a 2.5 year old girl, and a gleevec conceived baby on the way (that's been screened routinely for defects and genetic abnormalities) and knock-on-wood, this diagnosis won't take me out of the picture til they're grown and I've passed on what few life lessons I can. Kind of determined to anticipate the worst pcr results and take it in stride. Statistics arent law, but a prediction (yours are great though, be confident and relax a bit) and I'll look and feel like hell before I'm out of here.

There's a lady I work with who's son is 12 and was just diagnosed with t-cell lymphoblastic lymphoma. Tremendously crappy stuff doesn't discriminate, yet we cml'ers are still the largely fortunate ones.

Where are you guys staying? Any cool plans?
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#27 thatguy

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Posted 27 April 2016 - 07:44 PM

It is nice to hear from someone my age also dealing with this. It sucks that we both got stuck with this at such a young age. I like to exercise too I lift weights 3 days a week and do cardio 2 days a week. I carry my gym bag with me to work every day since I walk to work and then to the gym after work. I actually feel like I have made more progress in the gym since I was diagnosed I have put on 10 pounds (hopefully muscle) and I am lifting heavier. I feel like this is a direct result of me eating a lot healthier since I was diagnosed. During the week now I pretty much only eat oatmeal, bananas, lean ground turkey, egg whites, quinoa, spinach, greek yogurt, rice, chicken and almonds. We eat out on the weekends but now I find myself ordering more healthy meals even on the weekend. I had to inform some of coworkers at my diagnosis just because I could not make my doctor appointments and lab tests outside of business hours. My coworkers think I should be at home resting and they think I am doing myself harm by going to the gym and working out. I know this is not the case at all but it is hard to explain to them I still have cancer and still have to go to the doctor visits occasionally as well as for lab tests (EKGs, Chest X-Rays, Blood Tests) which I am grateful have always come back normal and for my liver enzymes and such in range. They just don't understand that I can still do everything I was doing before I was diagnosed. Now that I have some scheduled vacation days coming up (actually Las Vegas this weekend with my GF) I find myself trying to schedule my lab tests and appointments during lunch so I can sneak out and back in from them without anyone realizing I had an appointment, as absurd as that sounds. Luckily my office is about a 5 minute cab ride from the hospital I go to for my appointments and labs and I can be back in less than 45 minutes.


Good to hear. I had similar results with my cardio after diag. I was lifting mostly prior to diag, and avoiding cardio as much as possible because I got winded so badly. After tki introduction, (I feel) things are much better, specifically lung capacity and muscle fatigue-(maybe due to my previous screwed up blood chemistries that I was unaware of)...it really sucks mentally man, but in all honesty you're inevitably going to acquire a deeper appreciation of this life and what other people have to deal with, in worse situations. "How cancer bettered my life" - I'm going to write a book. Lol. It's melancholy optimism, but as much as I wish I didn't have to think about this disease and the unknowns, I feel like it's given me a significant boost in personal growth, probably unachievable while in good health. I was diagnosed without having any life insurance policy, and I have a 2.5 year old girl, and a gleevec conceived baby on the way (that's been screened routinely for defects and genetic abnormalities) and knock-on-wood, this diagnosis won't take me out of the picture til they're grown and I've passed on what few life lessons I can. Kind of determined to anticipate the worst pcr results and take it in stride. Statistics arent law, but a prediction (yours are great though, be confident and relax a bit) and I'll look and feel like hell before I'm out of here.

There's a lady I work with who's son is 12 and was just diagnosed with t-cell lymphoblastic lymphoma. Tremendously crappy stuff doesn't discriminate, yet we cml'ers are still the largely fortunate ones.

Where are you guys staying? Any cool plans?
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#28 JohnFromChicago

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Posted 28 April 2016 - 12:02 AM

Good to hear. I had similar results with my cardio after diag. I was lifting mostly prior to diag, and avoiding cardio as much as possible because I got winded so badly. After tki introduction, (I feel) things are much better, specifically lung capacity and muscle fatigue-(maybe due to my previous screwed up blood chemistries that I was unaware of)...it really sucks mentally man, but in all honesty you're inevitably going to acquire a deeper appreciation of this life and what other people have to deal with, in worse situations. "How cancer bettered my life" - I'm going to write a book. Lol. It's melancholy optimism, but as much as I wish I didn't have to think about this disease and the unknowns, I feel like it's given me a significant boost in personal growth, probably unachievable while in good health. I was diagnosed without having any life insurance policy, and I have a 2.5 year old girl, and a gleevec conceived baby on the way (that's been screened routinely for defects and genetic abnormalities) and knock-on-wood, this diagnosis won't take me out of the picture til they're grown and I've passed on what few life lessons I can. Kind of determined to anticipate the worst pcr results and take it in stride. Statistics arent law, but a prediction (yours are great though, be confident and relax a bit) and I'll look and feel like hell before I'm out of here.

There's a lady I work with who's son is 12 and was just diagnosed with t-cell lymphoblastic lymphoma. Tremendously crappy stuff doesn't discriminate, yet we cml'ers are still the largely fortunate ones.

Where are you guys staying? Any cool plans?

 

I actually started enjoying cardio a lot more too after diagnosis maybe just because I am in better overall shape I don't dread it as much haha. When I am running and feeling good I feel like I kind of escape reality for a little which I enjoy. Not really the same feeling when I lift but I enjoy lifting as well just in a different way, it makes me feel like I am still strong and the cancer isn't burning me down in any way. What's funny about your "How cancer bettered my life" book title is that I sometimes try to convince myself that I am better off in some way I am not really sure in what way but just overall it will make my life better. Then reality kicks in sometimes and I think to myself I would have rather lost a limb (as awful as that sounds). Hopefully though if everything works out like I am hoping it will it will affect me negatively very little and if nothing else will help me slow down and enjoy a normal long life a little more. I really hope everything works out great with your baby on the way, I'm sure it will. I had two oncologists tell me I could conceive a child while on Tasigna or Sprycel without any issue and that the warnings were a sort of just in case legal thing. I don't really have any plans to have children in the immediate future but I also was scared to see that door close at diagnosis and I am glad it did not. I hope to have a child sometime in the next 5 years and also hope to see him/her grow to be an adult I am sure both you and myself will as the medical advancements in the coming years will probably increase our already good chances of normal life spans. That is really really unfortunate about your coworkers son I hope he is able to pull through. Whenever I hear a story like this I try to remind myself how silly I am for stressing so hard about having CML. We are staying at the Flamingo in Vegas we have stayed here before and it's really such a good deal and good location. We tend to go on a lot of vacations especially in the Spring/Winter/Fall when the weather is crappy here in Chicago. Luckily I get a quite a few vacation days now, 27, now that I have been with my company 5+ years. I am more a fan of adventurous vacations snowboarding, skydiving, cliff jumping, ATVs, rock climbing, hiking, scuba, surfing etc haha. My girlfriend is more about the relax by a pool eat and have a few drinks vacations. This trip that is mostly what we will be doing haha. I still drink occasionally as I have come to the conclusion that this is OK as long as my blood levels and liver levels are in check which they always are. Moderation being key, my rule is I never drink enough to give myself any kind of a hangover whatsoever. Other than dining and pools I hope to catch one magic show and I also would like to do a desert expedition to shoot guns and rent dune buggies.


Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg

 

0 Month PCR = 87% 

3 Month PCR = 1.2% 

6 Month PCR = 0.64% 

9 Month PCR = 0.26% 

12 Month PCR = 0.21% 

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.051%

24 Month PCR = 0.047%

27 Month PCR = ?.???%

 


#29 thatguy

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Posted 28 April 2016 - 01:34 PM

Chicago people like guns? Haha...Awesome, sounds like an ideal time if I don't say so myself! I had to get rid of the dirt toys after I found the desert "soil" here isn't too fun or forgiving when flesh makes contact. Lol. Well I hope it goes well, plenty of gun-adventure places around, but I don't know if any combine quads or rails with guns...although they should. Haha. That is an enjoyable aspect of life here- people aren't uptight about what goes on in the desert with guns and bikes and jeeps and stuff...and yeah, you have to allow yourself enjoyment, be that whatever it is. I gave up my vices years before the cml, but that was purely just a personal choice at that time. If you're looking for some low key (pretty much dive), good local places to eat, check out Rollin Smoke bbq on Highland, and Sofia's pizza on Southeastern and Russell. Get the cheese steak sub, it's legit.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#30 JohnFromChicago

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Posted 28 April 2016 - 02:28 PM

Chicago people like guns? Haha...Awesome, sounds like an ideal time if I don't say so myself! I had to get rid of the dirt toys after I found the desert "soil" here isn't too fun or forgiving when flesh makes contact. Lol. Well I hope it goes well, plenty of gun-adventure places around, but I don't know if any combine quads or rails with guns...although they should. Haha. That is an enjoyable aspect of life here- people aren't uptight about what goes on in the desert with guns and bikes and jeeps and stuff...and yeah, you have to allow yourself enjoyment, be that whatever it is. I gave up my vices years before the cml, but that was purely just a personal choice at that time. If you're looking for some low key (pretty much dive), good local places to eat, check out Rollin Smoke bbq on Highland, and Sofia's pizza on Southeastern and Russell. Get the cheese steak sub, it's legit.

 

I have actually been hunting twice pheasant and deer, but the hobby didn't really grow on me. Haha. I actually used to fish a lot when I was younger but haven't had much time for it since College (in Central IL). Shooting guns or bows is always fun though. I used to have a few motorcycles myself although never a dirt bike (always wanted to rent one though and hit up some trails). I was rear ended by a cab which put me in the ICU for 3 nights when I was 21 and I decided If I kept riding (at least in the city) I would eventually get in another accident and it could be fatal. Chicago traffic is pretty intense and cabs don't obey the rules of the road. I put about over 20,000 miles on my Yamaha R6 before the accident and decided that would be my last bike until I lived somewhere with less traffic. Going down on desert soil on a dirt bike does not sound fun though either. Thanks for the suggestions someone else actually told us to check out Rollin Smoke BBQ I am a big fan of ribs. 


Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg

 

0 Month PCR = 87% 

3 Month PCR = 1.2% 

6 Month PCR = 0.64% 

9 Month PCR = 0.26% 

12 Month PCR = 0.21% 

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.051%

24 Month PCR = 0.047%

27 Month PCR = ?.???%

 


#31 PhilB

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Posted 29 April 2016 - 05:45 AM

Hi John, firstly congratulations on that very rare feat of being able to do sums with logs without getting in a complete tangle.  I don't visit here very often now, so it's nice to now that there's someone who can keep an eye on Trey's maths while I'm away.  That does raise one question though: how can anyone that good at maths be dopey enough to agonise about a trend line drawn from two points, both of which are known to be subject to a huge error margin?  The only statistically significant bit of information you can derive from those numbers is that you are doing great. 

Like Kat, I had a good laugh remembering when I was at that stage myself and trying to extrapolate out my numbers (at one point I was getting some quite good correlation values by plotting the log of the log...).  As time went on I realised that my whether my numbers went up or down seemed to correlate as well with the number of rabbits I'd seen on the way to hospital as they did with anything else.  The measurements are so inaccurate that you have no chance of spotting trends without lots of data, and what's being measured doesn't move in any linear (or exponential) way either - in my own case I dropped 3 logs pretty quickly, plateaued for 5 years, suddenly dropped another log then plateaued again.   Others have displayed almost every curve you could imagine, but almost always down to a nice, safe level where they eventually stop worrying about it - as you will too.



#32 JohnFromChicago

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Posted 29 April 2016 - 10:20 AM

Hi John, firstly congratulations on that very rare feat of being able to do sums with logs without getting in a complete tangle.  I don't visit here very often now, so it's nice to now that there's someone who can keep an eye on Trey's maths while I'm away.  That does raise one question though: how can anyone that good at maths be dopey enough to agonise about a trend line drawn from two points, both of which are known to be subject to a huge error margin?  The only statistically significant bit of information you can derive from those numbers is that you are doing great. 

Like Kat, I had a good laugh remembering when I was at that stage myself and trying to extrapolate out my numbers (at one point I was getting some quite good correlation values by plotting the log of the log...).  As time went on I realised that my whether my numbers went up or down seemed to correlate as well with the number of rabbits I'd seen on the way to hospital as they did with anything else.  The measurements are so inaccurate that you have no chance of spotting trends without lots of data, and what's being measured doesn't move in any linear (or exponential) way either - in my own case I dropped 3 logs pretty quickly, plateaued for 5 years, suddenly dropped another log then plateaued again.   Others have displayed almost every curve you could imagine, but almost always down to a nice, safe level where they eventually stop worrying about it - as you will too.

 

 

Hi Phil,

 

I appreciate that someone has noticed my math skills. I will do my best to keep tabs on everyone's mathematical calculations when you're not around haha. Most of my coworkers attended Ivy League schools so they keep me on my toes. I'm not quite as gifted as them in math, I went to an average university in central IL, but they keep me around for my problem solving skills. I know that drawing a trendline between two points, especially ones with such margin for error, was silly and probably useless, but I find comfort in statistics and numbers. Before my diagnosis I really wasn't this crazy I swear haha. If something upset me before, which it takes a lot to upset me, I would just fix it or prevent it from happening again and forget about it. Not quite so easily done with CML. Now I have started to concern myself that my 6 month PCR (due to the inaccuracy of the test) of .639 could have been even higher or even above 1.2 (my 3 month PCR value). I know this is unlikely but I can't stop myself from worrying about it. 


Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg

 

0 Month PCR = 87% 

3 Month PCR = 1.2% 

6 Month PCR = 0.64% 

9 Month PCR = 0.26% 

12 Month PCR = 0.21% 

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.051%

24 Month PCR = 0.047%

27 Month PCR = ?.???%

 


#33 JohnFromChicago

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Posted 29 April 2016 - 10:32 AM

Does anyone think it would be a good idea to have a FISH test done? I had only one FISH test done at diagnosis and have not had one done since...Trey? Anyone?


Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg

 

0 Month PCR = 87% 

3 Month PCR = 1.2% 

6 Month PCR = 0.64% 

9 Month PCR = 0.26% 

12 Month PCR = 0.21% 

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.051%

24 Month PCR = 0.047%

27 Month PCR = ?.???%

 


#34 Antilogical

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Posted 29 April 2016 - 10:59 AM

Speaking of FISH, maybe if you changed your profile picture to one of you chasing a rabbit instead of swimming with turtles, your lab results will improve faster.  It could happen....


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#35 JohnFromChicago

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Posted 29 April 2016 - 11:15 AM

Speaking of FISH, maybe if you changed your profile picture to one of you chasing a rabbit instead of swimming with turtles, your lab results will improve faster.  It could happen....

 

Haha never even thought about the turtle being in my picture, maybe that was bad luck. Although they are a bit faster in the water then they are on land haha.  My cousin just got a pet rabbit for her son maybe I need to visit "Thumper" and take a picture with him haha


Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg

 

0 Month PCR = 87% 

3 Month PCR = 1.2% 

6 Month PCR = 0.64% 

9 Month PCR = 0.26% 

12 Month PCR = 0.21% 

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.051%

24 Month PCR = 0.047%

27 Month PCR = ?.???%

 


#36 PhilB

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Posted 29 April 2016 - 11:24 AM

On the other hand if you use all three data points and plot a trendline out to 1 year you get to a 5 log reduction.  Stop cherry picking your data.

FISH is rarely used below CCyR / 2 log PCR as the expected results would be of the same order as the false positive rate on the FISH (unless they've gotten better recently) so not much point.  Even less point doing it for someone who had very nice PCR results already.  Like you. 

As someone who is used to crunching numbers to try to get answers, I know how hard it can be to just walk away and accept that your toolkit has nothing to help you at the moment when it's something as important as this.  The bottom line is that any onc will tell you the same thing - wait 3 months and have another PCR.  You can spend those 3 months fretting and trying to manufacture more information that your data actually contains, or you can go out and have some fun.  The latter will be much better for your health.  (The third option of course is to have a jolly good rant about it.  This can also be highly therapeutic!)



#37 scuba

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Posted 29 April 2016 - 11:51 AM

PhilB wrote: "(The third option of course is to have a jolly good rant about it.  This can also be highly therapeutic!)"

 

Or ... argue with Trey and score points - that can be highly therapeutic!

 

Welcome back PhilB ... albeit for a short time. I am coming here less and less lately as well. I find I just don't think about CML much. Even taking my 20mg Sprycel (tiny pill; 1/5th normal dose) to keep me at <0.01% PCR doesn't much register. I do think about the newly diagnosed and how they have to go through the six levels after first learning of their CML diagnosis:

 

1. Denial

2. Anger

3. Bargaining

4. Trey interruptus

5. Depression

6. Acceptance

 

Almost everyone goes through this - some faster than others. It depends on how quickly they get through 4. or return to 4 ... over and over again. It's nice having 4 to fall back on as you so often did.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#38 Trey

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Posted 29 April 2016 - 12:48 PM

John,

Since your PCR is already under 1% you are equivalent to CCyR.  So FISH would almost certainly be zero at those levels and not worth your time.



#39 JohnFromChicago

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Posted 29 April 2016 - 01:01 PM

PhilB wrote: "(The third option of course is to have a jolly good rant about it.  This can also be highly therapeutic!)"

 

Or ... argue with Trey and score points - that can be highly therapeutic!

 

Welcome back PhilB ... albeit for a short time. I am coming here less and less lately as well. I find I just don't think about CML much. Even taking my 20mg Sprycel (tiny pill; 1/5th normal dose) to keep me at <0.01% PCR doesn't much register. I do think about the newly diagnosed and how they have to go through the six levels after first learning of their CML diagnosis:

 

1. Denial

2. Anger

3. Bargaining

4. Trey interruptus

5. Depression

6. Acceptance

 

Almost everyone goes through this - some faster than others. It depends on how quickly they get through 4. or return to 4 ... over and over again. It's nice having 4 to fall back on as you so often did.

 

I think if you replace "Depression" with "Extreme Anxiety" I pretty much just flip between any of these six levels on any given day. Maybe your right and I need to rant more haha. One day a few weeks ago I made a trip to Iowa with two friends to purchase a boat I didn't think at all about my CML that day till about 4pm on the way home when I realized I had forgotten to take my medication that morning. I suppose that means I was at the acceptance stage at least for that day anyways.

 

If they aren't able to find a cure soon for CML they should come up with some method of putting us into a year long coma after diagnosis to save us all the trouble. Then when we wake up just hand us a big hospital bill and tell us we are going to be just fine and send us on our way haha. Seems less cruel than these stressful tri-monthly status reports.


Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg

 

0 Month PCR = 87% 

3 Month PCR = 1.2% 

6 Month PCR = 0.64% 

9 Month PCR = 0.26% 

12 Month PCR = 0.21% 

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.051%

24 Month PCR = 0.047%

27 Month PCR = ?.???%

 


#40 JohnFromChicago

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Posted 29 April 2016 - 01:08 PM

John,

Since your PCR is already under 1% you are equivalent to CCyR.  So FISH would almost certainly be zero at those levels and not worth your time.

 

Thanks Trey! I guess now it's just a waiting game till my next PCR in 3 months. Man if they had at home PCR tests available they would be able to make a ton of money off me haha, I would do one every 3 weeks. It would probably be useless data though I guess and would just drive me even more crazy.


Diagnosed Age: 28

Diagnosed Date: Oct-20-2015

0-27 Months Rx: Sprycel 100mg

Current Rx: Sprycel 50mg

 

0 Month PCR = 87% 

3 Month PCR = 1.2% 

6 Month PCR = 0.64% 

9 Month PCR = 0.26% 

12 Month PCR = 0.21% 

15 Month PCR = 0.15%
18 Month PCR = 0.11%

21 Month PCR = 0.051%

24 Month PCR = 0.047%

27 Month PCR = ?.???%

 





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