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#1 Shaunrl

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Posted 02 May 2012 - 10:51 AM

Hello,

My name is Shaun and I am 24 years old. About a month ago I was diagnosed with CML. I first found out when I got a call from the blood bank to go get checked out by a doctor. A couple of days later I was diagnosed by a doctor who referred me to a hematologist. I recently was told that I would have to go through a round of chemo in addition to my current treatment.  This is all happening so quickly and I am not sure how I should feel about everything? I constantly feel tired, vomit constantly, and just not feeling like doing anything.



#2 CallMeLucky

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Posted 02 May 2012 - 11:10 AM

Hi Shaun,

A CML diagnosis is difficult, especially at a young age.  Right now I am sure you are scared and confused.  There are a number of things you will need to read up on to get up to speed on what is going on with you.  IN general for most people CML is not a terminal illness.  With the treatment options available, most people will live a long life (normal life span).  The downside is that as of today that treatment involves taking drugs for the rest of your life, but the drugs are not that bad and not the typical "chemo" you may be thinking of.  You said you will have to do "a round of chemo in addition to your current treatment".  Can you clarify a bit more on this.  Generally CML patients don't get chemo therapy unless they are in an advanced stage of disease.  Most people are diagnosed in chronic phase and go on one of the targeted TKI drugs like Gleevec, which is not chemo.

DO you know what tests have been done so far?  What phase are you in and what have you been prescribed so far.  If you share about your situation you can get a lot of feedback from this forum to help you navigate through this challenge in your life.


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%
 

 


#3 Shaunrl

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Posted 02 May 2012 - 11:32 AM

I am sorry, I just realized that in the process of typing quickly I left out a detail. The doctor said that if I do not respond to treatment I would have to go through a round of chemo. The last time the checked my CBC(a week ago) my counts had not changed since I was diagnosed, which caused some concern with the hematologist.   Unfortunately he left me with more questions than answers. Will I be put on another treatment plan and not chemo? I have had a bone marrow biopsy, and four or five CBCs in the last month.



#4 Shaunrl

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Posted 02 May 2012 - 11:33 AM

and I am currently on Gleevec and I have vomiting and nausea symptoms almost daily



#5 Trey

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Posted 02 May 2012 - 01:00 PM

If it were me, I would never allow any chemo to be given without first going through a rigorous process to determine that a marrow transplant was the only option remaining.  A month is not long enough to make that conclusion.

You should find out a few things:

1) What CML Phase are you in?

2) Did you have any high risk factors at diagnosis (such as high blast count or other issues)?

3) What other reasons does the Onc have to think that you need chemo (overall a dumb thing for an Onc to say to you without a detailed explanation)?

You should try to eat a large meal and take the Gleevec in the middle of the meal.  Also, some of us split the dosage and take half-dose twice per day, so that could help you reduce the nausea. 

If Gleevec does not work, the real next step is to switch to another drug (Tasigna or Sprycel).  I would re-emphasize that I would never allow anyone to put chemo into me unless there was agreement that a transplant was the only remaining option. 



#6 Rissa

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Posted 02 May 2012 - 01:56 PM

Welcome to the group Shaun.  Have you been taking gleevec with food?  I always take mine with some type of carbs like crackers, pasta, or bread.  If I don't I get really nauseous.  Are you throwing up your medicine?  Maybe it's not getting a chance to dissolve and that's why your numbers are staying the same?  Try the large meal like Trey said.  If that doesn't help ask your doc to prescribe an anti-nausea drug.



#7 knoppl

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Posted 02 May 2012 - 02:23 PM

Hi Shaun, welcome to our wonderful group. Splitting the dose made a tremendous difference to me. Not sure why, but it did. It does take some time to adjust to the medication. I am glad you found this group, it helped  me work through  this very scary diagnosis



#8 CallMeLucky

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Posted 02 May 2012 - 04:19 PM

It would help to know what your counts are if you could provide that information.  There should be a way to go before getting to the point of needing conventional chemo and chemo alone is not a treatment plan without a goal.  There is no effective chemo treatment for CML so the only reason to take chemo would be to prepare for a bone marrow transplant.  Before entertaining that thought since it should be your last resort, you would want to explore all approved CML treatments.  Starting with Gleevec is typical.  It has only been a month so it may be too soon to see any real results, but again it depends on where your counts started and where they are now.  You said they didn't change, so while they didn't go down, they also didn't go up.  Again, need to see the counts to advise better.  If Gleevec does not work, there are other drugs to try that will likely work.  I suggest looking into how much experience your doctor has treating CML it is fairly rare but since the treatment calls for prescribing an oral drug and most patients do really well, most oncologists think they are qualified to treat it and most of them are not when things are atypical.  So find out if your doctor is experienced with CML and if not you should consider finding a specialist to consult with if things don't go smoothly.


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%
 

 


#9 hannibellemo

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Posted 02 May 2012 - 04:25 PM

Hi, Shaun,

Welcome to the group no one wants to join! Trey is our resident CML guru so you can feel safe in following his suggestions. I hope you become more educated as time goes on, everything is really new to you right now, but CML is really a different animal from the other leukemias. I'm not going to say I'm glad I have it but we do have many more options on our treatments.

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>


#10 Susan61

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Posted 02 May 2012 - 05:57 PM

HI Shaunri:  As you can see everyone has questions about how you are explaining your course of treatment.  Do what Trey said.  Get more information, and then let us know what else you find out.

     Let me welcome you to the group.  We are all going through what  you are, and just know your not alone in this.

CML is one of the better Leukemia's as they say.  That might sound odd, but it can be very treatable.  If you are in the Chronic Stage then you should do very well on the Gleevec.  Take one step at a time.  Always eat a full meal before you take the Gleevec to avoid that nausea.  Some people like to take it in the evening with dinner, because that is usually your bigger meal of the day.  Glad you joined us.



#11 NotJack?

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Posted 02 May 2012 - 05:58 PM

Hey shaun,

Always get copies of your blood work at the time that you are stuck if you can, (I stick around the 20  to 40 minutes to get mine), make a template of your blood results and share them here to get help interpreting what is going on.  I chose to get a CML expert to get a second opinion.  He monitors my treatment along with my general oncologist.  I always defer to the hired gun, but appreciate the opinion of the general onc and nurse practitioner.  You can get great referrals here for a specialist in your area.  The learning curve is steep initially, but we have all been where you are, and will help all we can.  Read this when you can http://treyscml.blogspot.com/   We help each other out with this journey, and we all learn something new with each new member.  Take care, Jack


Jack


#12 Guest_billronm_*

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Posted 02 May 2012 - 10:08 PM

Dear Shaun,

   Welcome, and I am so glad you found our site. I know you are so scared and so sick right now. It's so awful to get a diagnosis (dx) like this, and to be told very little about it. The same thing happened to me 5 years ago. I was put on Gleevac and it made me so sick. I think the fear of our dx is enough to make us sick, and to go on a drug like Gleevac(G)  at a time like this, really hits you hard. A lot of people on this site have been on G for years, and they are doing fine. If you can't tolerate G then then there are 2 other drugs we call (tkis) one is Sprycel (S) and another one is called Tasigma (T). Our bodies do need time to adjusts to these tkis.

If your dx is cml, there is no way you will need chemo. You have to get a bit more information about your dx. You should really try to find an oncologist who is more familiar with cml. Don't be afraid of getting other opinions. You are not trapped with just one doctor or oncologist (onc). Find out as much as you can, and ask Trey what he thinks, he has been studying cml ever since his dx. I would trust his opinion more than my oncs, and I have a very good onc.

   Trey is a big ol Texan,who has has cml for a while,so he just sits on his porch every day, in his 10 gallon Cowboy hat,and his cowboy boots propped up on the railing, and he has an infinite knowledge of cml and other types of leukemia,or cancers. There is no question,or lab report he can't decipher for you. His life seems to consist of learning anything and everything about cancer we need to know. So he can help you so much!

I know PhilB we have to get a 12 gallon hat for Trey. Shaun that is a joke between Trey and PhilB who always tells him he needs a bigger hat.

                                                                                           Sincerely Billie

Please stay with us,let us know how you are doing!



#13 Shaunrl

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Posted 02 May 2012 - 11:49 PM

Thank you for all of the advice. I have been looking for a hematologist for another opinion on my CML.Chicago is only a short four hour train ride from here so I would like to make an appointment with one of the hematologists up there.Trey, I will split the dosage and eat a big meal prior to taking it. I will keep you posted on how I am doing.

Thank you ,

Shaundra



#14 0vercast

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Posted 03 May 2012 - 11:08 PM

When I started on treatment, I found that eating lots of light foods during the day and drinking water helped with the nausea.  I wasn't hungry at all and I lost my sense of taste for a month, but I ate anyway.  Try drinking 2 liters of room temp water every day and eating foods like salads, yogurt, cereal, sandwiches, brown rice, etc.  Stay away from rich foods or food that are greasy.  Taking walks and staying busy helped, too.  I also took Hydrea (chemo) along with my Gleevec for about 2.5 weeks to get my white blood cell numbers down into a normal range.  The Hydrea wasn't that big of a deal.  The Gleevec gave me wave of fatigue at first abut an hour after taking it, so I got into a routine of taking it an hour before sleep.  It would basically act as a sleep medicine.  It doesn't really have that effect anymore.  I can take it whenever, but I still take it in that time after dinner and before bed.

I pretty sure now that the stress, shock, and lack of sleep from a surprise CML diagnosis caused as many physical side effects as the medicines did.  Once you relax, I think you'll feel a lot better.  Reading about leukemia everyday on the internet didn't help me one bit.  It made me stress out way more than I would have otherwise.  There's a lot of info out there that is outdated and distressing.  Tons of contrasting opinions, too.  If you're going to read about leukemia, stay on this message board or check out Trey's CML Blog I linked below.  As soon as I chilled out, stopped thinking about leukemia all day, and started sleeping better w/o the Ambien, everything changed.  I basically have zero side effects now and feel normal.  BTW, I'm only a few years older that you, and I was dx 2 months ago.

http://treyscml.blogspot.com/

Joe



#15 Pin

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Posted 05 May 2012 - 05:53 AM

Hi Shaundra, welcome to the gang I hope you are feeling better with splitting the dosage. Let us know how you go?

I am on Gleevec too and it makes me feel nauseous after taking it for about an hour at least half the days of the week. I have heard that dose splitting can help with this, so it is something I am interested to try (especially if it alleviates any of my other side effects, nausea is bothersome, but for me it is tolerable). One thing I would suggest though is to check with your doctor before making any changes to your medication regime just to make sure it is ok.

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





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