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Life Atfer CML


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#1 PhilB

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Posted 26 September 2012 - 04:50 PM

I thought I'd share a few thoughts with my Imaginary Friends, having been away for a while.  Despite the title of the thread, I know I do still have CML.  I've had my stable MMR for long enough to have pretty much given up hope of ever getting to a fourth log reduction.  But  I am happy to say that I no longer feel defined by my disease.  This is in no means a recommendation, but, for me personally, I had to take myself away from all you lovely people (and Trey) for a while to achieve that change.

I'm now three and a half year post dx.  Taking my naturally pessimistic view on the pre-Glivec survival stats, that means that I have already been gifted 6 months of extra life by these wonderful drugs.  That really puts all the side effects (which continue to be vexing and painful) into perspective.

I cannot thank the members of this site enough for all their help on my journey.  The support, information and camaraderie I found here made an enormous difference to me and gave me the tools I needed to make that big climb from 'I have cancer!!!!!' to 'Sod the cancer, I'm going out to have some fun'. 

I'm sorry to have vanished off and left you all, but I really needed that break from the constant exposure to this disease to finish getting my head together.  For 3 years this site was always the first thing I read on waking every morning (or often in the middle of the night between dashes to the bathroom) and  I needed to put some space between me and CML.  In trying to make a break, I switched to other websites such as the cricket scores and the latest Spanish bond yields (neither recommended for cheering you up!) and tried my best to forget I had CML with, I am pleased to say, a pretty good degree of success.

I'll try and pop in from time to time in the future to keep tabs on how you are all doing  (really sorry to hear that Ron hasn't been well Billie) but I thought I'd leave you with a few thoughts on what my CML journey has taught me:

1.     Don't live your life as if you were immortal.  Our time on this earth is fairly short and we should all try and make sure we have as much fun with it as we possibly can.?

2.     Just because you have a medical degree doesn't mean you're not a dangerous moron?

3.     There really are a whole lot of nice people out there.?

Taking my first point to heart, I am now trying not to fret over the economy either(nor the cricket), and my first website visit of the day now is always the weather forecast, the tide tables or other information on the best places to go kayaking with my boys.  If anyone has wondered where I had vanished to, the answer is doing about six knots across Poole harbour using a golf umbrella as a sail, without a single CML thought in my head.

I salute you all

Phil



#2 scuba

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Posted 26 September 2012 - 05:31 PM

Phil,

Well said - especially 1,2 and 3. I have been blessed with a cool wife who gives me perspective. Life is indeed too short to stop living.

Whatever pain we feel can be reduced and whatever bad thoughts we have can be controlled. And Mary Poppins has a nice umbrella as well.

So cheers with a Glendronach 33 year old. I had some the other day and CML never came to mind. Very good stuff.


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 sharcare

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Posted 26 September 2012 - 06:39 PM

Thanks guys,  Being new to CML, I will take ur advise.  I am on Sprycel and felt good the first month but now in the second month I am back to feelng super fatigued!  I work in a school system and going back to work, this month, I think had somethign to do with that.  I work w/ 4 year olds who certainly keep my mind off of CML and give me alot of joy.  I am also planning my middle sons wedding in May, also alot of joy!  I do hope that I will have the stamina to at least get through the mother/son dance and maybe a few more!!! 

Sharon



#4 Trey

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Posted 26 September 2012 - 08:06 PM

You say you departed "to finish getting my head together", but you still ended up with a silly hat upon it.  "On fortune's cap we are not the very button."



#5 Antilogical

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Posted 26 September 2012 - 08:17 PM

... Burma Shave.


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.


#6 PhilB

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Posted 27 September 2012 - 09:51 AM

"Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

And never stops at all."



#7 hannibellemo

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Posted 27 September 2012 - 04:17 PM

Damn it, Phil, I thought you were cured and writing to share your miraculous discovery with us! But since you aren't I will say it's good to hear from you! Please give my best to Nicollette and the boys (whose names I am doomed to get wrong for all of eternity)  but don't tell them that - just say "the Pats" send their love.

Next time though, have the cure, please.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#8 Susan61

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Posted 27 September 2012 - 06:38 PM

Hi Phil:  We are all going to miss you, but with thoughts that your only away for awhile.  I hope you get on here to give us some great news or just to chat once in awhile.  So glad you found some peace in your thinking.  We all need to do that once in awhile.  You do not have to have CML or any other disease, but Life Is So Short as we are only here for a little while.  Enjoy everything you can, and do all the things you want to do

     Know that we all love you, and no matter when you come back to say Hi! We will be her with open arms for you.

     Spend some great times with your wife and family.  This past year has certainly kicked many of us in the behind, and not just from CML.  This economy has done its job on all of us too.  You have inspired us with your thoughts to help us get through it all, and take one day at a time and get the most out of each day.

God Bless You

Susan



#9 mariebow

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Posted 27 September 2012 - 06:48 PM

Well said Susan61



#10 Guest_billronm_*

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Posted 28 September 2012 - 02:53 AM

Dear Phil,

It's odd that you posted today,

I've been thinking about you all day, A couple years ago I bought Ron a Lovely cukoo clock with Eagles  on it. And today I found this rather large bird feather in my yard. It's a beautiful feather and to my knowledge we don't have any birds that large in this area. I was pruning my rosebushes at the time and I thought you might have popped in for a cup of tea. You and your lovely family are always welcome. Anyway I put the feather on top of the clock and it looks like it belongs there. And I really appreciate the feather, most other birds that visit me are not as considerate.  Tally Ho   Billie



#11 threedprof

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Posted 28 September 2012 - 06:24 AM

I have always looked forward to your updates, Phil. Thank you for helping to keep the light burning for many here.  I truly understand the need to focus your energies elsewhere. I'll look forward to hearing from you later.



#12 eithne01

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Posted 29 September 2012 - 11:58 AM

I'm afraid I'm stuck on your second thought at  the moment.  I need to move on to a  more positive place.Just for my own well being.

I'm glad things are going well for you.x



#13 Melanie

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Posted 29 September 2012 - 02:58 PM

Thanks Phil for all your wonderful insight and sharing of experiences. I'll miss your wisdom, humor and bantering with Trey. Love where your head is at...Pray you continue to have such peace and love surrounding you. Blessing to you and family! Melanie


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#14 PhilB

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Posted 19 November 2012 - 11:52 AM

Thnaks for the kind comments guys.  Thought I'd drop in and see how everyone was getting on before my sedation wore off - I see Trey hasn't got tired of abusing me yet so probably a good job that I am sedated.!

Life has been pretty good over the last few weeks.  Nice holiday kayaking on the Norfolk Broads, generally pottering about and trying to have a bit of fun. I haven't enjoyed this last weekend though.  My wife's been talking to my onc when she meets her out and about and asking if anything could be done about all my Gastric issues, and so my onc has been pestering me to get it looked at - despite the fact I'm sure it's the just the good old Gleevec side effects.  I finally gave in and agreed to have a colonoscopy and gastroscopy to keep them all quiet.  I wasn't too bothered about the procedures themselves (a walk in the park compared to a BMB) , but when you're as much of a foodie as I am, two days on a low residue diet and a day on clear fluids only is a real nightmare.  Being in a house full of delicious food you can't eat is (literally) no picnic.  And as for taking a laxative when you already have the Gleevec Two-Step, lets just say Niagara falls has nothing on me.

Well I made it through the diet without going completely crazy - (thanks largely to a very nice chicken consomme recipe) and had the 'top and tail today' with sedation.  It's the first time I've ever had sedation, being it the 'grin and bear it' camp with BMBs, but I have to say I can see the appeal.

As predicted, the colonoscopy showed nothing at all so that part of the exercise was a waste of time.

The gastroscopy, however, found lesions in the oesophageal wall.  They managed to excise one of them and send it for biopsy, but the big one will need a specialist to remove.  Having been dealing with CML for 3 and a half years, and a prostate scare last year I now have another possible cancer to worry about.  Ho hum.  Not sure I like the odds of making it to retirement!

Best wishes to all

Phil



#15 Pin

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Posted 19 November 2012 - 05:54 PM

Hi Phil,

Great to hear from you! I wonder what you are up to from time to time (and not just when Trey is ragging on you or your hat!).

Glad that things have been going well lately, but sorry to hear about your oesophagus testing. Do you happen to suffer from any reflux/heartburn etc? I get a lot from the old G, so I have to take Zantac for it. The reason I ask, is that my partner has an oesophageal disorder (achalasia), had a heller myotomy operation back in 2003 and as a result has a lot of acid reflux etc from his stomach not being closed properly anymore. Anyway, he has regular gastrosopies to check that things are ok down there and the last time he had one, they also found "lesions" that had to be biopsied. Turns out they were ok, just a bit of tissue damage from the acid. Anyway, I hope this is all it is for you too. Did they give you any more info? It's not like we don't have enough to worry about already.

Let us know how you get on?

Cheers,

Pin.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#16 Marnie

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Posted 19 November 2012 - 06:40 PM

Hey, Phil. . .good to hear from you again!  Glad to hear that you've been taking time off and enjoying life.  I need to do that.   Been a rough year.  Sorry that you've now got a new thing to worry about.  Fingers crossed that all will come out o.k. 

All the best,

Marnie

(and the hat still looks great)



#17 Guest_billronm_*

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Posted 19 November 2012 - 10:33 PM

Hi Phil,

   It's great hearing from you again, minus the esophogial issue. It seems like it's one thing after another for all of us, and naturally it's always something that gives us the big C scare. I know it's so hard not to panic but I'll tell you about my big scare which was dragged out for 9 months.

  I had a nagging cough for quite a while a couple years before my dx. I went to my pcp who immediately sent me to an endocronolo---whatever (Throat Specialist) he did an endoscopy on me and told me my esophagus was extremely damaged and I had, I can't remember the big words he used but he said they were precancerous and just ready to turn and I would have to go to a big hospital out of town and have major throat surgery. This was in April, he immediately started me on 40mg of Nexium, I can't remember how many times I had that endoscopy sometimes once a month and by December I was having it done every 2 or 3 weeks. He was working constantly with the pathologist, and keeping a real close watch on me but they were pretty sure I would have to have the surgery. In Dec he doubled my nexium to 80mg a day as one last try and did the test again 2 weeks later, and it showed a slight improvement and he kept doing the endoscopy every 3 weeks, then monthly, 6 months etc. My esohagus kept healing, now I only have to get the test once a year, and my last test showed It was completely healed. I'm so thankful that I had a Doctor who didn't want to rush me into surgery. What I have is called Barets Disease, which means I have acid reflux that damages the esophagus. I take 80mg of Protonix a day, I guess with cml you're not supposed to take nexium so I guess Protonix is the lesser of two evils. But I sure know what you're going through. Good Luck, Billie 

Boy it's really hard writing about that it was a looong 9 months.



#18 PhilB

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Posted 20 November 2012 - 06:22 AM

Thanks for the replies people.  I do indeed suffer from quite a lot of reflux and I'm guessing that's the root cause of the problem.  The challenge will be finding something to treat that without inhibiting the Glivec uptake.  Does Tasigna have the same issues of needing an acid environment for absorption?

I'm feeling much more upbeat today after the doctor who did the endoscopy and spotted the lesions called round last night to discuss it with my wife and I,  and said he thought the odds were very much that they were benign.  There are definite advantages to being treated by a close neighbour!  Strangely everyone at the hospital seemed to expect that I'd rather not be treated by someone I knew.

Best wishes to all

Phil



#19 Tedsey

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Posted 21 November 2012 - 12:31 PM

Glad to hear the doc thinks the lesions are benign.  Keeping fingers crossed.  Continued good health to you!    BTW, as per the recommendation from my onc, I started to see an ophthalmologist.  I didn't know of a good one, so I took a chance and saw my cousin.  I do not know him very well.  However, as it turns out, he was the absolute right person to see.  His wife has CLL and he knows all about the leukemias and what they can do to your eyes.  I felt like I hit the jackpot.  Synchronicity?  Luck?  Clearly it can sometimes pay off to see someone you know, if not being able to reach them easier.  

He told me his wife goes to Switzerland for stem cell treatments of some kind (not a SCT).  As far as I know, her CLL did not become aggressive.  I guess the Swiss are doing things docs are not allowed to do in the USA.  My cousin says says they can no longer find any evidence of CLL in his wife.  The treatments have been successful.  Have you or anyone heard of this?  Nevertheless, it is hard to believe they are curing leukemia in Switzerland while we sit unaware in North American and Great Britain.

All the best,

Tedsey



#20 hannibellemo

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Posted 22 November 2012 - 09:51 PM

Phil,

I was on Prilosec with Gleevec and I made it to CCyR in 9 months and I had a pretty heavy cancer load...but, Prilosec is hard on the liver, too. I often wonder if taking them both together contributed to my adverse liver reaction?

Good luck!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>





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