53 replies to this topic

[Trey]

Don't use results on Hydroxyurea as a guage of progress, since it is not a very useful drug for CML.  Sometimes it is still used to quickly lower the WBC while waiting to start Gleevec, but this is not used much any longer.  Most of us started straight on Gleevec.  But overall, the platelets are often the last blood issue to normalize in CML and will bounce around for a while.

[Happycat]

Welcome, Pham!  I'm sorry you got CML, but I'm glad you found this site.  It's a great resource.

Traci

[GerryL]

Hi Teds,

If your blood test shows your calcium levels are good, then you don't need to take extra calcium if you don't feel like it. They keep a check on it during a blood test as TKIs can prevent the body reabsorbing calcium. People taking fluid tablets might need to also keep an eye on their calcium levels as the body can be flushing out the calcium a bit quicker than normal.

I was originally taking extra calcium and magnesium for migraine as magnesium may be of assistance with that, I also had a bit of knee trouble. I keep taking it due to the TKIs and also to prevent loss of bone density when I get older.

[saiyogo]

Hi everyone,

It's been awhile since I've last visited the forum. I've been taking Gleevec for the last 18 days and seems to be doing great. I came to the hospital yesterday and got a result as follows:

WBC: 4.55

RBC: 4.49

PLT: 284 (huge reduction from 638 2 week later)

They're all seem to be within normal range, my only stat that remained outside of the safe zone is the one called GPT. I got

GPT: 48 (normal range: 5 - 41)

So can anyone tell me what is the problem here? I do a Google query and it seems to mean that my liver enzyme is rising a little too high. Do I have to worry about that?

Sideeffectwise I seem to be lucky with no trouble yet. Sometimes I feel a little tired but that is not something I cannot deal with he he.

Wish you all a wonderful summer!

Xuân Nam.

[Trey]

GPT is another name for ALT, and is a test that shows there could be issues with the liver or possibly muscle injuries.  ALT is often reported in relation to AST as a ratio, which can be a better indicator.  Your GPT (ALT) is just slightly high, and is not unusual for starting TKI drug therapy.

Here is a previous discussion:

http://community.lls...e/108937#108937

http://labtestsonlin...es/alt/tab/test

[natesmama]

HI,

      I AM NOT A CANCER PATIENT BUT MY 31 YEAR OLD SON WAS DIAGNOOSED WITH CML A COUPLE OF WEEKS AGO. THE DRS THINK THAT HE PROBABLY HAD IT FOR OVER TWO YEARS BEFORE HE WAS DIAGNOSED. HE LIVES BY HIMSELF IN MIAMI AND WHEN HE CAME HOME (DE) TO VISIT IN AUGUST WE WERE ALL AGHAST WHEN WE SAW HIM. HIS PULSE WAS ABOUT 140 AT REST, HIS FEET AND ANKLES WERE SWOLLEN WORSE THEN ANY PREGNANT WOMANS. HE HAD OBVIOUSLY LOST WEIGHT AND YET HIS ABDOMEN WAS DISTENDED.HIS HEARING WAS VERY IMPAIRED IN ONE EAR, AND HE WAS EXPERIENCING SOME PANIC AND ANXIETY RELATED ISSUES WHICH HE WAS TRYING TO SAY WAS THE ONLY THING WRONG.

     I AM A MAMA BEAR EVEN THOUGH MY CHILDREN ARE GROWN, AND I BEGGED HIM TO SEE THE DR WHEN HE GOT BACK TO MIAMI. HE DID, BUT THE DR ONLY FOCUSED ON THE ANXIETY SYMPTOMS AND SENT HIM HOME WITH XANAX FOR HIS ANXIETY AND AN ANTIBIOTIC FOR HIS EAR. JUST A FEW DAYS LATER, THE TOP OF NATHAN'S FOOT BEGAN TO TURN RED AND SWOLLEN WITH WHAT APPEARED TO BE AN INSECT BITE. LONG STORY A LITTLE SHORTER, HE WENT TO AN URGENT CARE, SAW A LADY DR THAT REALLY LISTENED AND WAS CONCERNED. SHE TOOK AN EKG, A CBC, GAVE HIM MORE ANTIBIOTICS AND SENT HIM HOME. THE NEXT DAY HE HOBBLED TO WORK AND EARLY AFTERNOON RECEIVED A CALL FROM THE LADY DR. SHE SAID "I NEED TO SEE YOU IN MY OFFICE AS SOON AS YOU CAN GET HERE". HE LEFT WORK AND WENT TO THE OFFICE.

    I WAS AT MY DAUGHTER'S HOME HELPING WITH MY GRANDBABIES WHEN HE CALLED ME AND SAID "MOM, I HAVE LEUKEMIA. THEY SAID I HAVE TO GO TO THE HOSPITAL, BUT I DON'T WANT TO GO UNTIL YOU GET HERE." THAT WAS AROUND 2:00, FRIDAY AFTERNOON, SEPTEMBER 2, 2011. I ONLY HAD A COUPLE OF OLD OUTFITS AND WORNOUT SANDLES WITH ME AT MY DAUGHTERS, BUT BY 8:00 P.M. I WAS ON A ONE WAY FLIGHT TO MIAMI.

     THE NEXT MORNING WE WENT TO THE EMERGENCY ROOM AT UNIVERSITY OF MIAMI HOSPITAL. THEY COULDN'T BELIEVE HOW BAD NATHAN'S VITALS WERE AND HE WAS STILL WALKING AROUND.  HIS WHITE BLOOD COUNT WAS WAY OVER 600K, HIS B/P WAS HIGH HE COULD BARELY BREATHE, HIS FEET WERE GIGANTIC AND HIS PULSE WAS 150 LAYING IN BED. NEEDLESS TO SAY, HE WAS ADMITTED. SINCE IT WAS LABOR DAY WEEKEND, THAY HAD SOME TROUBLE GETTING TESTS DONE ETC., BUT FINALLY SEVERAL DAYS LATER HE WAS TOLD HE HAS CML IN THE ACCELERATED STAGE. HE IS ON GLEEVEC AND IS NOW HOME. I AM STAYING IN MIAMI TO HELP HIM OUT.

     I KNOW THIS IS A LONG "REPLY BUT I HAVE TRIED OTHER WAYS OF CONNECTING ON HERE AND I GUESS I AM JUST NOT FORUM SAVVY. WE NEED FRIENDS AND HELP AND INFORMATION AND WE NEED TO HEAR HOS OTHERS LIVE WITH THIS.

    OBVIOUSLY I HAVEN'T TOLD THE WHOLE STORY OR THIS WOULD BE EVEN LONGER. THANKS, IN ADVANCE.                                                            NATESMAMA

                                                                                                                                                                                                                                                     PAT

[GerryL]

Hi Pat,

Welcome to the board, hopefully we can be of help and comfort to you and Nate.  You've learnt how to post a Message into a thread and if you'd like to start a new one for any questions you have just hit the New button on the top menu; then select discussion; then Chronic Myelogenous Leukemia and go from there.

If you or Nate have any questions, worries etc don't hesitate to ask, there will always be someone around to answer you. There are some excellent threads around for any newbies to CML, I'll have to leave it to one of the others to pop the links in their post for you.

Gerry

[GerryL]

Hi Pat,

I've found one of the links - Trey is our "go to guy" for a lot of our questions - sometimes we do bug him, but he is pretty patient even when we ask dumb questions.

http://community.lls...mpiled-postings

[lala]

Hi, Pat, welcome to our cml club.  That is quite a story....holy cow.  Thank God for mothers.  This is the best place to find info regarding cml.....I think you should start a new thread so many will read it.....don't be afraid to ask for help and to ask specific questions. You must be so overwhelmed at this point.  I hope the others will hop on soon to help you.  ~Lala

[scuba]

Mama - Nates going to be fine.  Fortunate he was caught in time.  And not in Blast crisis.

I am puzzled why they didn't start him off with Sprycel?  For Accelerated phase, Sprycel has great results.  Gleevec, however, will knock his WBC counts down fast and his heart will steady.

He should drink lots of water.  When the cells die off in huge quantities, Lysis syndrome can result.  He likely will have fever and not feel too good for a week or so, but then will feel much better as his body recovers.  The water helps flush out the metabolites from the dying overproduction of white cells.

For him to be walking around like he was - he must be one heck of a trooper.

He'll need lots of monitoring and bone marrow work up to see the status of the CML.  The good news is you both are onto the disease.  CML can't win now.

Read as much as you can on this Discussion Boards.  It will arm you with knowledge that will be useful as you meet with doctors.  The good news is this is one disease that can be beaten.

All the best

[Trey]

Pat,

Nate was truly in danger as his heart tried to pump blood as thick as molasses.  600K WBC is extremely high.  It is well that he met the lady doc.  She saved his life.

Now the focus is on fighting the CML.  Here is some introductory information for you and Nate:

http://community.lls.org/docs/DOC-1271

Being diagnosed in Accelerated Phase CML requires some additional diligence to watch his test results very closely.  The CML drugs are designed to keep the CML from advancing.  For Nate, the Gleevec will need to bring him back to Chronic Phase and keep him there over the long term.  We will need to discuss this in the coming months as his drug therapy proceeds over time.

For now I would suggest that you ask the Onc some questions:

1) What was the reason for diagnosis of Accelerated Phase?

2) Does Nate have high risk factors associated with the diagnosis?  If yes, what are they?

3) What was Nate's blast count at diagnosis?  Basophil count?

4) Is Gleevec the right drug, or would Sprycel be better?

Hope all will go well for you both.

[nathaliece]

Dear Pat,

Nate is so lucky to have you.  You are both fortunate that you found this sight.  I have found this board to be a wonderful, kind, informed group of individuals who individually care.  I will keep both of you in my prayers.  Please post any questions so you can get answers and not unnecessarily have to hang on to worries.

All the best,
Nat

[jones2641]

what up Saiyogo? welcome, sorry to hear of your diagnosis. lots of support here. keep us posted on your condition.

++ mojo