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Nothing definitive but more good than bad


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#1 CallMeLucky

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Posted 01 October 2012 - 02:10 PM

I saw the Urologist today to discuss results of the pelvic MRI.  (for anyone not familiar with my recent situation I had abnormal PSA tests signifying potential prostate cancer)  Everything was completely normal on the MRI.  This is really good because it means they found no tumors or anything like that.  They also didn't find any benign issues like enlarged prostate, hernia, or any inflammation at all.  So for now I'm kind of in a holding pattern but I guess it is for the best at this point.  The doctor is stopping short of doing a biopsy.  He said that based on the issues I have, pelvic pain, rapidly increasing PSA in short time, normal physical exam, normal MRI, that at age 39 the odds of Prostate Cancer are around 1%.  He said he feels this is an inflammatory issue, although he cannot tell me why.  His suggestion is to try and get as much anti-inflammatory meds into me as I can tolerate over the next 2 months and then repeat the PSA again.  We are trying a nasal inhalation NSAID to see if I can avoid the stomach issues I have when taking NSAIDs orally.  So while I do not have a definitive "you do not have prostate cancer" he feels pretty certain that I don't, and if I did it is not spreading so there is time to watch and wait.

After meeting with him I had a talk with my onc who agreed with the assessment.  She said there was no point coming down there if the MRI was normal because they would watch and wait too.  It seems no one is eager to give a CML patient an invasive biopsy with high risk of infection.  I guess that is good.

On the CML front, my PCR came back negative signifying the first two back to back negative PCR's I have ever had.  I have had negative PCR's for about a year or so now, but each time the next one would go slightly detectable and then undetectable again.  So this time it stayed below the detection line.

For better or worse I have made the decision to change TKI drugs.  I'm tired of tolerating the muscle pains from Gleevec and there is a part of me that wonders if the screwed up muscles in my pelvic floor are somhow related.  I figure I shouldn't have much to lose.  Sprycel seems pretty safe in the sense that if I do have a problem with it (myelosuppression, pleural effusion, etc) I could always stop the drug and even go back to Gleevec if I have to.  But on the chance I switch and I feel better then it would be worth it.

So the journey continues, it's not easy, but it could be much worse.  I have found a friend in Xanax and I will see how it goes over the next 2 months.  We are going on vacation in Nov which may be just what I need to take a break and the best part is I got the ok to take a TKI break while on vacation before I start taking Sprycel.  So maybe I will actually have a few days where I can feel somewhat normal.

That's it for now.

Will update as things happen.

THANKS


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%
 

 


#2 scuba

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Posted 01 October 2012 - 02:17 PM

Gary - all good news. As you are PCRU - I would be somewhat hesitant on full dose Sprycel.  Just something to think about. I'll know later this week if I finally reached PCRU - and if I have, I did it on 20mg. Sprycel, something for you to consider.


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"


#3 Rissa

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Posted 01 October 2012 - 02:36 PM

That sounds great Lucky.  Must feel like a weight has been lifted off your shoulders, and your shoulders have been holding up a lot of weight lately.  I hope the switch to Sprycel is a good move for you. 



#4 djm

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Posted 01 October 2012 - 02:53 PM

Sounds like good news Lucky.  Good thoughts heading your way.



#5 TeddyB

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Posted 01 October 2012 - 03:19 PM

Glad to hear, i will have a glass of good wine in your honour. Skål

Keep us updated, and do try to relax now, as it seems the odds are very much in your favor now

I know its not easy, i remember 4-5 weeks after dx my groin lymph nodes felt swollen, and i thought i at least had 2 other cancers, but it was just the skinny version of me after loosing a lot of weight, where almost everything on my body "stuck out".

Oh, and good luck with the change to Sprycel.

If i were to switch from G, i would want to go with Sprycel aswell, but mainly related to the fasting and the pill 2 times pr day with Tasigna.

No muscle pain/cramps here though, at least not yet. (Knock on wood)



#6 mabdou2005

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Posted 01 October 2012 - 03:54 PM

Hi Gary

I just switch from G to S from 3 weeks till now i can Confirms that it is a very very BIG deal  fog brain, swollen eye and face, muscle cramps, joint pain all i was suffering from it is now 100%  finish

Good luck

M abdo



#7 Tedsey

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Posted 02 October 2012 - 11:15 AM

Dear Luck,

Glad a big load is off!  This is really good news.  Good luck with the drug change.  I hope your side effects disappear.  I am very lucky on Sprycel, where I don't feel a thing.  So, it is possible!  In a sense, I got my life back, if only my PCR would start to go down (it has been stuck for the last 3 tests).  I am happy to hear you are PCRU again!  Hurrah!  Celebrate and really enjoy the upcoming vacay! 

All the best,

Teds

P.S. Xanax is my good friend too.  I am always glad it is there when I need it.



#8 Susan61

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Posted 02 October 2012 - 05:27 PM

HI:  You deserve a break from everything, and your news does sound good along with a PCRU report.

I love this time of year, and you go have a great vacation and do something fun and forget all the medical stuff for awhile. 

Susan






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