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#21 Daisy1985

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Posted 06 January 2012 - 08:30 AM

Tiouki,

you are right, we cannot live our life in fear or to place ourselves under a glass cupol. At this point I just hope we will be able to enjoy the good things in life and dare to make plans again.

Of course, I will let you know the results of the tests next tuesday!

Good luck everyone!



#22 CallMeLucky

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Posted 06 January 2012 - 09:27 AM

http://bloodjournal....362889.full.pdf

ABSTRACT

Success of tyrosine kinase inhibitors (TKIs) in Chronic Myeloid Leukemia (CML) has given patients hope for a long disease-free-survival. A longer-survival raises the question of late- effects including the development of another malignancy. Records of 1445 patients with CML/Myeloproliferative Neoplasm or other hematologic malignancies treated with TKIs were reviewed to investigate the frequency and characteristics of second malignancies (other than AML, ALL or MDS). The number of second cancers was compared with the number expected from the Surveillance, Epidemiology, and End Results database. After a median follow-up of 107 (range 13-362) months after CML/MPN diagnosis, 66 (4.6%) patients developed 80 second cancers, including skin (31%), prostate (15%), melanoma (13%), digestive system (10%), kidney (4%), thyroid (4%), breast (3%), CLL (3%), hepatobiliary (3%) and other cancers (14%). Excluding non-melanoma skin cancers, 55 second cancers were seen in 51 (3.5%) of all patients treated. The risk of second cancer was lower than expected risk (observed-to-expected ratio 0.6, 95% confidence interval 0.44-0.81). Second cancers occur in a small percentage of patients receiving therapy with TKIs for hematologic malignancies, mostly CML. There is no evidence at the moment to suggest that exposure to TKI increases the risk of developing second cancers.


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%
 

 


#23 Daisy1985

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Posted 08 January 2012 - 05:24 AM

I notice in the last couple of days that Tom is loosing weight, sweating a lot during the night, coughing, especially after effort, like for instance going up or down the stairs. We are very scared bcs all these symptoms are typical for CML and we fear the Gleevec is not helping.  I know there are some other TKIs out there, but don t they all work in the same way, if one is failing can we have hope for another?

Fingers crossed for tuesday for the new results, but so far I m petrified



#24 scuba

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Posted 08 January 2012 - 09:20 AM

In reference to whether "TKI increases the risk of developing second cancers".

Actually - I believe it would be the reverse. Tyrosine Kinases are powerful enzyme proteins. They signal all kinds of activity in cells largely around cell division signalling. Pump out Tyrosine Kinase and cells get the message to divide (among other signalling pathways). Rapidly dividing cells necessarily need Tyrosine Kinase to replicate.

Shut down the production of Tyrosine Kinase as Tyrosine Kinase "inhibitors" do and cells are inhibited from dividing. That's why we have issues with skin, hair and other cellular processes in our bodies that rely on rapidly dividing cells - including myelosuppression. Cancer cells are very much assisted by Tyrosine Kinase. Take Tyrosine Kinase away and we remove an important pathway for the cancer - (although cancer does find a way to get around a lost pathway).

TKI's strongly inhibit colon cancer, for example. Chances are - in addition to fighting CML - we are probably helping ourselves avoid colon cancer. I wonder how many CML patients develop secondary colon cancer once they are on a TKI (especially Sprycel)?


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"


#25 lala

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Posted 08 January 2012 - 09:25 AM

Hi, Daisy.  I just read your post.  I am sorry you are so scared, and Tom is so sick.  I can't give any medical advice.....I can only offer mom advice!  :). You are my son's age!  That is waaaaaaay too young to have to worry about all this!  Hang in there to see what Trey and the others say.  My daughter is 23 and married, and I know how she would feel if her husband were sick.  I am alive and well after six years of cml.......hoping Tom responds well to the available meds......and you have an easier day.....Lala in Chicago



#26 Trey

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Posted 08 January 2012 - 10:11 AM

These symptoms do not turn around that quickly.  And many of the symptoms could be related to high platelets (esp coughing, but also other issues).  The platelets are often the last blood cell issue to resolve itself. 



#27 Daisy1985

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Posted 08 January 2012 - 10:16 AM

That makes a lot of sense, one thing less to worry about



#28 Daisy1985

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Posted 08 January 2012 - 10:23 AM

Hi, lala

thanx for your encouraging words. It is indeed an unpleasant period, it hurts me so much to see him suffering, sad that he cannot go on with his live and that he has to spend most of the time in bed.  But I m doing my best to think positive and hope that better times will come and the treatment will eventually work, we just have some  patience right now, as hard as it is.

Glad to hear that you re doing good after 6 years, it s people like you that give us hope for the future



#29 Daisy1985

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Posted 08 January 2012 - 10:34 AM

Thanx for the explanation, Trey!.

Our family doc said some weeks ago that his high WBCs make his blood thicker and it cannot properly irrigate the lungs and  that s why the coughing. I do not know the situation of the platelets, bcs we don t really have some copies  of the bloodresults, but it would be interesting to follow.

But since there s is not so much that we can do right now, we shall wait for the next bloodresults.

I keep you posted, best wishes everyone!



#30 NotJack?

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Posted 08 January 2012 - 02:00 PM

Hi,

Trey is spot on with his insight. The only other advice I would suggest, other than Trey's Blog, is to get a printout of all of the blood work from day one now, and get cc's of future work given to you.  I googled every data category, (ie. WBC, etc.), note the symptoms of high and low levels of each, and see if they help to explain what you are running into. I found a number of indicators of coughing, from several different sources for me.  It also made sense for me to get a specialist in CML in addition to my general onc (who was supportive of this decision), and usually give deference to him regarding my care (and there were significant differences).  General oncologists are fantastic, and treat many cancers, while my CML onc is an expert on mine. 

I had similar WBC at diagnosis, was put on Tasigna (because Novartis was having a three month free deal, and my insurance would not pay for any of the TKI meds), and my count dropped quickly  down to normal--and then some.  There are other options if the Gleevec doesn't do the trick.  I was told that this is a slow progressing cancer, and that I probably had it for years before diagnosis.  Hang in there, and best of luck to both you and Tom,  Jack


Jack


#31 Tedsey

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Posted 08 January 2012 - 02:44 PM

Please forgive, but I disagree CML is an accident.  The only thing I can think of that comes close (to an accident) is the Big Bang Theory.  And if that is an "accident", like CML, since there are more than one of us afflicted with this "accident", there must be other universes out there sustaining intelligent life.  I think there is a cause, whether it be the environment or inherited.  And it is possible there is more than one cause because even in our small group of CMLers, we vary genetically.  It is kind of like, some people suffer from allergies and some don't.  Moreover, some are allergic to cats and others mold, etc.  The sources are different, but cause the same histamine reaction (at varying degrees too).

Nevertheless, it is probably useless to ponder "which came first, the chicken or the egg".  Modern medicine is not there yet.  But I believe it is close to learning how to effectively turn things on and off.  That must be good enough for now.  As we learn more about genetics, epigenetics, etc., it may be possible then to narrow down the cause of an individual's CML,  (sort of like an allergy scratch test, but probably more on a molecular/atomic level).

However, if one disputes the Big Bang, then my argument is mute.  Grand accidents then, are the will of God.  And hopefully by curing CML or finding better and more effective treatments, we are abiding by His testament. 

Teds 



#32 Tedsey

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Posted 08 January 2012 - 02:56 PM

Daisey,

I was just trying to say that you shouldn't torture yourself about what caused your husband's CML.  It is not anyone's fault.  Look at all of us, who would we blame???  Just remember, most artists do not get CML.  It is a relatively rare disease.  In life, we cannot control for everything we come into contact with.  We just don't know.  Radiation from the sun is harmful.  But all of us are exposed to it on a daily basis.  And when we travel in airplanes, we are exposed to a higher dose.  I would believe that most people who fly do not get CML.  When I was first dx, I drove myself crazy with this, as I think most everyone does.  Try to let it go the best you can.  No need to live scared.  Who needs more anxiety now?  I think the diagnosis provides enough to be scared about. 

Anything could happen at any time.  But we still drive our cars, cross the street and live our lives.  And the odds are in your husband's favor.  These drugs may promise many of us old age.  I wish that on both of you.  May you have long and happy life together.

The time of and just after diagnosis is the absolute hardest part.  Then, it is just rolling with the punches.  And many of us are very lucky.  CML and drugs may not punch too hard. 

Take care,

Tedsey



#33 tiouki

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Posted 08 January 2012 - 02:59 PM

Hello Ted,

I must admit I didn't really understand what your are saying...

I don't see the link between CML and the big bang theory. The universe and people having CML are 2 completely different things, it is not possible to make any comparison about these 2 things.

Now about the "cause" of CML : in this case it is quite simple, as for this cancer only one mutation causes it (at least one to be exact) : a chromosomic translocation between the 9th and the 22th chromosome... And it is not inherited. Genetic mutations happen all the time in all our cells. Some mutations do nothing some lead to cancers, like CML but also all other types of cancers.

And I don't think there is a need to include God in the discussion

I hope you will clarify your thoughts for me, I am not an english speaker so I apologize if I did'nt get you well

Pierre



#34 Tedsey

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Posted 08 January 2012 - 03:16 PM

I'm sorry Pierre. I was not trying to get after you. I guess this is just an emotional subject for me. I have a hard time believing the CML just happened. 

I am not anti-God either.  I was just comparing a popular theory that demonstrates "chance" to the will of God.  I guess you don't have to always separate the two.  I didn't mean to offend.

Sorry if my post was confusing.  I probably got a little ahead of myself with the Big Bang Theory.  I was getting a little dramatic, as usual.  Sorry.  My post was impulsive.  But I will always wonder why our bodies support these mutations.  Well, maybe everyone's bodies would if they HAD the mutation, I don't know.  Why do so few of us have it?  Here I was telling Daisy not to drive herself crazy about this, AND I am still pondering.  I am such a hypocrit.  But, I don't lose sleep over it anymore or live as scared.  I even use the microwave now.

I so appreciate the articles you always post.  Hope I didn't upset you.

Good health and peace,

Tedsey



#35 Tedsey

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Posted 08 January 2012 - 03:26 PM

Sorry Daisy, I am probably driving you crazy.  Anyway, I had a terrible first year.  I suffered from dangerously low blood counts.  I had such severe anemia, I could barely walk across the room (had trouble breathing).  I would watch healthy young moms take their kids to the park out my window.  I cried because it was so hard to even feed and diaper mine.  However, after a drug change and another year of other treatments, I feel better than 100%.  I don't feel any different than I did before the drugs.  I feel great.  I hope your husband gets there much sooner than I (it took me about a year).  I thought I would never get back to the way I was, but I DID.

Take care,

Tedsey  



#36 tiouki

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Posted 08 January 2012 - 03:43 PM

Hey Tedsey !

No need to apologize ! I was just curious about some of the things you wrote . There is no problem really

I understand also that it is an emotional subject for you. It's the case for me also. I agree it's hard to believe that "it just happened". But as I said elsewhere, according to my girlfriend's psychiatrist ( ) when people get some disease like CML or other cancers they always try to find a reason for it, to explain things. But most of the time there is not, it is just chance. To realize this helped me so I try to share it.

I am not aware of this popular theory about God but I guess in France we are less religious.

About what you said on the mutation I think it is quite an open question. I mean, maybe if anyone would get the mutation they might not develop CML ( = there might be other factors, immunological etc...). But why is it so rare => I think that it can solely be because a chromosomic translocation at these exact spots on 2 chromosomes is just ... very very rare. It even incredibly rare if you consider one single cell of one single individual.

But, if you consider billions of stem cells that replicate for many years in 7 billions person on earth... then it happens sometimes...

Anyway all these numbers are only speculations. But they can help to admit the fact that we are the unlucky ones that got the wrong mutation in the wrong cell at the wrong moment

You didn't upset me at alI hope I haven't offended you either


Good luck to you and to every unlucky one here

Especially you daisy as you just joined the club, I am sure Tom will get better soon. A high number if white cells can explain his symptoms, plus gleevec generates side effects, all of this is hard for one body. Hold on he will be better soon I am sure

Pierre



#37 pamsouth

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Posted 08 January 2012 - 03:59 PM

Jack

Regarding "was put on Tasigna (because Novartis was having a three month free deal, and my insurance would not pay for any of the TKI meds), ""

Just wondering since your insurance doesn't pay for TKI med's, is Novartis still picking up the tab?

When did you go to Tasigna? I was a little surprised they didn't start out on Gleevec as it is a cheaper TKI, now.

My insurance has been paying for Gleevec for 6 1/2 year, but they are getting tighter and right down to a 1 or 2 day turn around with only a 30 day mail order supply, instead of the 90 day mail order,  they use to give me.

Last December and this December I receive a letter from the UAW TRUST VEBA of auto maker that contracts Blue Cross of Mi  (we live in In) and also contracts Medco as are prescription carrier.  Medco call me ever month to schedule shipment and ask question.  However my oncologist still has to call the UAW Insurance Trust ever December ( starting a year ago) and say I still need the drug, and then the drug / payment has to be approved by the board. Then they send me a letter it has been approved but can be changed at any time due to economy, etc.

I think, at the moment,  I am grand father in, but the annual reports always say the insurance is based on the world wide economy.  That is one of the reasons i was hoping to stay on Gleevec as it will be generic in 2015 and the price per pill will drop significantly.  I said HOPING to Stay On Gleevec!!  I see other countries such as Japan/Asian are starting to make their own, so competition is a good think to maybe help keep the price down, I hope.

PamSouth

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#38 NotJack?

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Posted 08 January 2012 - 05:04 PM

Hi PamSouth,

I went on Tasigna on 8/31/11.  My WBC was 250k, and I was prescribed just the Tasigna and allopurinol. I don't know the reason they had the Tasigna deal.  (The deal was for 3 months, and they gave me another month extension).  My supposition is that they felt that the Tasigna was more effective and/or Gleevec is soon to be generic.  Whatever the motivation, they have my eternal thanks!  I got on a Minnesota legislated insurance for us untouchables who are refused insurance, or, as in my case, whose insurance would not cover TKI's in their formulary.  The law  was passed in 1997 I think, and it mandates insurance companies to provide insurance to us at no more than 125% of regular individuals.  ( They also waived the 6 month pre-existing wait time  (thank you MCHA!), so I got their insurance just as the free Tasigna ran out).  Good luck with coverage continuing.  There is always the appeals process, but I found that to be quite a chore.  (I know, too many parentheses and exclamation marks!)  Jack


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#39 pamsouth

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Posted 08 January 2012 - 05:44 PM

Tedsey,  I think that over 90 % of those that deal with devastating health care crises, all ponder the same question from time to time.  Even though we may come to terms with it.  I would imagine that for most, the future and the questions still lurk in the back of our minds our subconscious.

That is what makes the board unique,  everyone deal in different ways!!

You have a right to ask all and any of those question without offense.

PamSouth.  


PamSouth


#40 pamsouth

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Posted 08 January 2012 - 05:51 PM

Jack,

Perfect Timing for you.  Although I think it is awful especially when newly diagnosed we have to fuss over all the bills, and insurance, and getting or worrying about the financial part of it.

I can remember the first 6 months into diagnosed with a ton of bills and sitting on the phone everyday for hours with billing and insurance.  I can remember being sick and trying to straighten the mess out and breaking down and crying on the phone.  Sometimes it can be a bit cold and callous out there.  Glad you were able to work it out.

Later I hooked up with some local. pretty darn smart group of people fighting for legislation to improve the health care and make sure everyone got a fair shake. 

No one should have to worry about getting treatment or losing everything they have in order to survive.

PamSouth


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