Jump to content


Photo

New here, diagnosed three days ago, two weeks before my 18th birthday.


  • Please log in to reply
72 replies to this topic

#1 Risen

Risen

    Member

  • Members
  • PipPip
  • 26 posts
  • LocationMount Pleasant, PA

Posted 15 February 2015 - 10:59 PM

Hi everyone, made a post in "Newly Diagnosed", and user Tex suggested I make a topic here.

 

I'm still having a bit of anxiety, and trouble sleeping. But that seems to be fading.

I have a few questions, now that I can think clearly. I'd ask the Onc. but I'll probably end up forgetting all of them, lol.

 

How bad do the hand cramps get? I know it differs from person to person, but how bad did yours get? I play guitar, and it'd be pretty upsetting to not be able to play.

 

Am I going to lose alot of weight? I'm overweight, a mix of fat and muscular. Am I going to lose fat or muscle? 

 

Being that I live in Pennsylvania do I have to worry about being out in the cold while on the Hydrea? We went to the mall to get new shoes for myself today, and I was afraid to uncover my mouth while walking through the parking lot (Nearly sprinting. Lol).

 

What are things that I should be weary of?

 

I'll probably have more, but thanks in advance.

 

 


I'd like to think I'd never cave in. 
A vicious battle I may never win.
And I'd like to think I'll come out stronger.
Life's swinging hard but I'm swinging harder.

#2 chriskuo

chriskuo

    Advanced Member

  • Members
  • PipPipPip
  • 367 posts

Posted 16 February 2015 - 12:55 AM

If you just received your diagnosis, have you started medication yet?

 

Do you know which CML TKI drug you will be starting with?

 

In the beginning, you are likely to have some side effects from whichever drug you are taking.

The drugs should bring your blood counts into line fairly quickly and start reducting the number of

your leukemic cells.

 

It is normal to feel physically fatigued and mentally stressed out.  But you will be having frequent blood tests

to start, and the positive direction of those tests should help relieve your anxiety.

 

Best of luck with your treatment.



#3 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 16 February 2015 - 02:55 AM

Hi Risen,

  First of all, don't listen to old war stories they aren't true, please pass this on to your mother, I can't imagine how I'd feel if my daughter or son got a cancer dx, especially because the C word is the scariest word in the world, and you are so young. When you get more info let us know more details about your dx.

CML is very treatable, it will not kill you,you will not lose your hair,you will not gain weight(I keep losing weight after 7 years) onc doesn't want that. If you have some trouble with water weight they give you a water pill. You will play the guitar as long as you want, I play piano,keyboard,&guitar, we have one member who plays so many instruments I can't pronounce or spell them. I had leg cramps 250 mg of magnesium a day and I haven't had a cramp in 4 years. I am much much older than you!

Please, try to calm down, and have your mom post on the board, there are so many other members who can help you both with all your questions and help calm your fears.

                                                                               Billie



#4 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 16 February 2015 - 09:07 AM

Welcome, everyone usually has some form of side effects but they vary with each person. You will find people who had difficulty with side effects and others who had little or none. Please remember what ever you read, this is your journey and you are unique, as we all are.

As Billie noted soon there will be many knowledgeable people answering your questions and offering helpful advise.

You live in PA also? Wonderful weather we are having, I have been hibernating for days. I cannot find one reason why I would have to go outside when it is several degrees below zero.

Take care of yourself and take a deep breath. You have found a good place with great people.
Pam

#5 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 16 February 2015 - 09:51 AM

Over 95% of CML patients do very well on the TKI drugs and will likely live a normal lifespan. 

 

Regarding your specific questions, Gleevec is the worst for hand cramps.  The guitar would be an issue while on Gleevec, so you could discuss starting on another TKI drug with the Oncologist.

 

Here is a good summary of information for the newly diagnosed CML patient:

http://community.lls...ewly +diagnosed



#6 Risen

Risen

    Member

  • Members
  • PipPip
  • 26 posts
  • LocationMount Pleasant, PA

Posted 16 February 2015 - 11:41 AM

Went to the bathroom lastnight and passed gas twice, looked and nothing but blood came out. Headed to hospital.

Trying not to freak out, but I'm freaking out.


I'd like to think I'd never cave in. 
A vicious battle I may never win.
And I'd like to think I'll come out stronger.
Life's swinging hard but I'm swinging harder.

#7 mlk210

mlk210

    Advanced Member

  • Members
  • PipPipPip
  • 158 posts
  • LocationIllinois

Posted 16 February 2015 - 12:22 PM

Risen,

 

I'm sorry for your diagnosis, but you will get through this. I'm 38 and watching my parent's go through this with me is hard. I see the torment in their eyes and how bad they wish they could take it from me. As a mother myself, I can relate. Your mom will have some of the same stages as you do going through the process. Parents are protectors of their children and that never changes regardless of age. As you see success, you both will become more relieved. 

 

I'm only 6 months into treatment and I've already seen promising results. For me the first three months were the hardest both physically and emotionally. Read up on Trey's blog, and get accurate information rather than the internet. Post any questions here and you'll get answers. 

 

I'm not sure about the blood while going to the bathroom, but hopefully someone more knowledgable then me can help you out. 

 

Take care and tell your mom to as well!


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#8 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 16 February 2015 - 12:57 PM

Going to the hospital is the right approach.  Tell them you are taking the Hydroxyurea.  Bleeding can be a side effect of the drug, and can include blood in the stool.

 

http://chemocare.com...px#.VOIvDf5J0Wk

 

They should tell you to stop taking the Hydrea.


Edited by Trey, 16 February 2015 - 12:57 PM.


#9 Risen

Risen

    Member

  • Members
  • PipPip
  • 26 posts
  • LocationMount Pleasant, PA

Posted 16 February 2015 - 02:05 PM

Here now, just got told my initial WBC count was 300,000. They just took blood to see what it is now.
I'd like to think I'd never cave in. 
A vicious battle I may never win.
And I'd like to think I'll come out stronger.
Life's swinging hard but I'm swinging harder.

#10 Risen

Risen

    Member

  • Members
  • PipPip
  • 26 posts
  • LocationMount Pleasant, PA

Posted 16 February 2015 - 05:59 PM

Going to the hospital is the right approach.  Tell them you are taking the Hydroxyurea.  Bleeding can be a side effect of the drug, and can include blood in the stool.

 

http://chemocare.com...px#.VOIvDf5J0Wk

 

They should tell you to stop taking the Hydrea.

 

Doctor's said it was unrelated apparently, which I was very relieved to hear.

They gave me Xanax to calm my nerves and I'm pretty out of it lol.

 

They also said my WBC dropped from 300,000 to like 260,000, but they upped my dosage to 1000mg in the morning and 1000mg at night, which worries me. But as of right now, I dunno if it's the Xanax or what, but I feel pretty good.


I'd like to think I'd never cave in. 
A vicious battle I may never win.
And I'd like to think I'll come out stronger.
Life's swinging hard but I'm swinging harder.

#11 Antilogical

Antilogical

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • LocationPittsburgh, PA

Posted 16 February 2015 - 06:16 PM

Being out in the cold weather while on hydroxyurea should not be a problem.  I was diagnosed in February, 2012, and still went out and shoveled snow while on that drug as I started taking the Gleevec.  I'm still here!  And I still hate snow....


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.


#12 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 16 February 2015 - 07:21 PM

Probably just blew out a hemorrhoid with all the explosive gas.

 

Make sure they monitor your blood counts closely (weekly) to ensure you don't drive them down too low.  That can happen very quickly once the cells start dying off. 

 

Also drink lots of fluids during initial therapy to flush out dead cells and keep the kidneys clear.  You are killing off billions per hour.



#13 Risen

Risen

    Member

  • Members
  • PipPip
  • 26 posts
  • LocationMount Pleasant, PA

Posted 16 February 2015 - 08:41 PM

I appreciate all of the information from all of you guys, it's really helped to calm my nerves. 

I feel pretty normal right now, but that'll probably change when I take my next round of Hydrea. I appreciate this forum so much already, and you guys have helped my mother out which is has helped me out alot. She has High Blood Pressure, and this whole experience hasn't helped, but it is getting better.


I'd like to think I'd never cave in. 
A vicious battle I may never win.
And I'd like to think I'll come out stronger.
Life's swinging hard but I'm swinging harder.

#14 JPD

JPD

    Advanced Member

  • Members
  • PipPipPip
  • 258 posts

Posted 16 February 2015 - 11:55 PM

Tell your mom the only thing she has to worry about is that this forum is filled with malcontents and some twisted individuals.  CML sucks donkey dicks, but the pills ARE miracle drugs.  It doesnt always come easy (sharts, hair loss, eye bleeds) but the meds work.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#15 Risen

Risen

    Member

  • Members
  • PipPip
  • 26 posts
  • LocationMount Pleasant, PA

Posted 17 February 2015 - 12:40 AM

Thanks, JPD. Lol.

 

I misheard the Dr. about my Hydrea dosage, they said to take 2000mg in the morning and 2000mg at night. Is that normal? Any drug dosage that high is pretty daunting.


I'd like to think I'd never cave in. 
A vicious battle I may never win.
And I'd like to think I'll come out stronger.
Life's swinging hard but I'm swinging harder.

#16 mlk210

mlk210

    Advanced Member

  • Members
  • PipPipPip
  • 158 posts
  • LocationIllinois

Posted 17 February 2015 - 09:26 AM

I was taking 1000mg twice a day when I started Hydrea. My WBC count was 106k at diagnosis. I remember my onc telling me, we may have to go up higher if need be. I'm sure you are absolutely fine. Has your doc talked about which TKI they want to start you on?


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#17 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 17 February 2015 - 09:49 AM

Hydroxyurea (HU) dosage for CML initial use to bring down a high WBC (usage debatable -- more about that later) is done by body weight, about 25 - 30 mg per kilogram.  The weight used is ideal weight, not actual if overweight.  So if you are about 5'10" ideal weight for 18 yr old is under 156 lbs (71 Kg) then 30 x 71 = 2130 max per day.  So I would very seriously question the 4000mg per day, which is about double the max recommended dosage.  See, math is useful after all, and you slept through it this past year in high school. 

 

http://www.drugs.com...ydroxyurea.html

http://www.healthsta...-healthy-weight

 

Beyond that, Hydroxyurea (HU) for initial use to bring down WBC rapidly is a debatable issue.  Before the TKI drugs (Gleevec, etc) existed, this was standard practice.  Now that TKI drugs exist, and are considered less toxic than HU, I do not see the purpose in using an actual chemotherapy drug like HU to bring down WBC initially.  The HU does not target leukemic cells, but rather kills all types of blood cells randomly, both good ones and leukemic ones.  TKI drugs target only the leukemic cells.  So it is the difference between using a shotgun (HU) and a rifle (TKI drug).  I personally believe this killing of the good blood cells by HU is counter-productive in treatment of CML.  It can lead to blood counts which are too low after the TKI drug starts working, and it is more toxic than TKI drugs. 

 

You indicated your initial WBC was 300K, which is somewhat higher than average at CML diagnosis (CML average at diagnsois is under 200K).  So your Onc is trying to bring down the WBC rapidly using HU.  But the TKI drugs do the same thing, and as I see it, they do it more safely (less toxic).  Again, HU is actual chemotherapy, and TKI drugs are not.  For me, I would prefer to only use TKI drugs from the beginning.  They do a fine job bringing down the WBC in a more controlled and safer manner.

 

So there are two issues: 1) the dosage seems way too high, 2) the use of HU at all is questionable.

 

I realize this is a lot for someone who should be only be considering what shoes to wear in the morning while skateboarding.  But here you are with the rest of us, and we will help all we can. 

 

So ask your Mom and Onc about this issue. 



#18 IGotCML

IGotCML

    Advanced Member

  • Members
  • PipPipPip
  • 57 posts
  • LocationDallas / Fort Worth, TX

Posted 17 February 2015 - 12:09 PM

I was on Hydrea for a month after my initial diagnosis because of insurance issues and the cost of my first month's supply of Tasigna. My onc wanted me to start on a TKI immediately, but it was initially cost prohibitive. I was taking 1500mg per day.



#19 snowboots

snowboots

    Advanced Member

  • Members
  • PipPipPip
  • 48 posts

Posted 17 February 2015 - 06:56 PM

Risen, you are so brave and smart to have found these forums so early in your diagnosis. They

have already been a tremendous help to me. Had my bone marrow biopsy yesterday. Waiting 2 weeks

for official diagnosis. The waiting sucks but the forum has given me confidence so I just want to get

the diagnosis, get started on treatment, and get on with my life. It will be easier because I am much

better informed now thanks to these guys.  I'm a Pennsylvanian too, but a January

baby so I love the snow and cold weather!



#20 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 17 February 2015 - 11:05 PM

Hi Risen,

You keep referring to they (who are they?) Do you go to a cancer center,or oncologist, or hemotologist. Have they mentioned a bmb yet? We are all older than you and we compare notes on how to deal with side-effects. Everyone is different, we have had some young members around your age college students and they are doing very well. There are a lot of very knowledgeable people on this board

They have studied just about everything there is about cml, you'll hear terms like pcr,bcr-abl,%percentages etc. But that is for later. I know you and your mom are so scared and confused right now, but the most important thing is your treatment.Trey had such in-depth knowledge abut cml that I would listen to him before my onc if a problem arose. So please you and your mom trust him if you noticed all the advice he gives you he gives you the link where he got that information. Any advice we give you is not internet crap, we tell you what we know through experience. Knowledge is power, don't be afraid to speak up, you and your mom have to remember he is working for you, I know it all seems like greek to you but the sites Trey has recommended are in plain English, geez if I can understand them anyone can. If that sounds like to much hydrea have your mom call and ask them why you are on such a high dose. I was dx aug 2007 my wbc was 90,000 I was very lucky but I have another health problem so I was getting bw every 6 months .My first onc had me on Hydrea 3 days thats all I was on allipurinol for 3 weeks and my wbc went down to 2000. I ended up in the hospital with pneumonia and I had to get 2 transfusions. I got a new onc while I was in the hospital. I am still with him now and a lot of people on this forum get second opinions just for their own peace of mind.       Sincerely Billie






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users