27 replies to this topic

[lindacarriere]

My husband was diagnosed last Tuesday with CML.  We do not know what phase it is in, but the Oncologist told us it was Chronic or Accelerated.  He gave him Hydroxyurea for one week and told us to come back to get his results next week.  He says he wanted to get his while blood cell count down.  It was at 269.  Has anyone else seen this done before?  In everything I have read, I have never seen anyone mention this course of action before.

Thanks for any help!

[PhilB]

Hi Linda,

Welcome to the club that no-one wants to join.   The treatment route your hudband's doctor is following is fairly common so don't worry about that.  The Hydrea doesn't treat the underlying CML, but it's still a good drug for getting the high white blood count down quickly.  There are two common ways in which it gets used:

1. If WBCs are very high it is sometimes prescribed at the same time as the TKI drugs to get the counts down faster; or
2. It can be used in the period between picking the CML up on blood tests and confirming it with the results of a bone marrow biopsy.

I'm guessing your husband is probably in the second position - which is exactly the route that I went.  Once the results are in the doctor will start the proper targeted treatment, but in the meantime it makes a lot of sense to start bringing down the counts and Hydrea is still a great drug for doing this.

Keep us posted on how he gets on and this is gthe place to come for any other queries you may have.  It's a scary diagnosis, but the great majority of people now do really well on the drugs and that's what you have to focus on.

Phil

[Floa7]

Hi  Linda

I started hydroxyurea 2000 mg on Jan 27 2012 for two weeks to get my WBC down before I was put on Gleevec. The oncologist said there was two many white cells to go onto G that soon. that G would kill to many white cells and I could have kidney failure from too many dead white cells, that would clog up my kidneys. I continued both pills till white cells were back down to normal. I am only on Gleevec 400 mg now.

My sister had blood work 2 years ago with platelets at 84 k Hers never got to the WBC and she is stilll on hydroxyurea. My son also got diagnosed with CML and was on Gleevec 8 days before i ended up in the hospital in Jan.

This is the best place for reading about other CML patients.

Flo

[LivingWellWithCML]

Hi Linda,

When I was diagnosed, I was immediately put on a 2-week regimen of Hydroxyurea and Allopurinol (which keeps the kidneys from clogging up during the mass CML destruction phase).  I had no material side effects during this period ... I continued running 3 - 4 miles daily while on hydro & allopurinol ... heck, it was the only way I could clear my mind in light of the diagnosis.

I don't hear this much on the board, but the oncologist who diagnosed my case said that if you start with a high WBC (> 100,000), then starting with Hydro is a good practice, because then you can transition to a TKI with a more normal WBC from the get-go.  When you start the TKI treatment path with a normal WBC, then you can gauge initial hematological response faster since the "noise in the system" has been quickly knocked down first.  For my case, I was diagnosed with 155,000 WBC, took hydro for a couple of weeks, then I had a WBC of 6,500 when I took my first Gleevec dose - I literally took my last Hydro dose on a Monday evening, threw the bottle in the recycle bin, and started Gleevec on the next morning with breakfast.  Within a few days of starting Gleevec, my WBC dropped further to 3,200 (also pretty common), and it has continued to hover between 3,200 - 4,200 ever since.

Linda - Phil's exactly right ... the vast majority of patients start on one of the TKI therapies in short order, stabilize, and life will largely return to normal (albeit, a new normal) as the amount of CML burden in the body decreases to very low (and in some cases, undetectable) levels.  It's truly remarkable stuff.

Definitely post any questions about his bone marrow biopsy results when you get them, because the group on this board can analyze the results better than many oncologists (believe it or not!).

[Trey]

Some Oncs continue this outdated practice of using Hydroxyurea at first for CML even though it is not necessary.  The Gleevec (or Sprycel or Tasigna) can do the same job, and quite effectively.  I hope that Oncs will get the message some day to stop using Hydroxyurea for newly diagnosed CML patients. 

[0vercast]

I think many of us were given Hydrea during initial treatment.  It appears some were given just the Hydrea, and some were given Hydrea along with a TKI, like I was.  It took 4000mg of Hydrea and 600mg of Gleevec daily for a couple weeks to get my WBC counts down from the 350,000 it had reached in the few days between diagnosis and hospital admission/start of treatment.  It spiked 100k in just those 4 days.  The standard doses of 2000mg and 400mg of Hydrea and Gleevec weren't getting the job done very quickly.  On the standard dose, the numbers weren't dropping some days, if they were it was very slowly (5-10k daily). Once my WBC reached 4000, which is on the low end of the normal range, I discontinued the Hydrea and Allopurinol and decreased the Gleevec to 400mg daily, and my WBC is now at 6300 after a full month on just the Gleevec.

[cleocans]

I went in to my first appt. with my onc.  We discussed my symptoms and my CBC results.  WBC was 187,000.  He said I would be starting Gleevec after the results of the BMB.  The next day I had my BMB and a prescription for Sprycel.  He wanted to get my WBC count down and didn't want to wait for the results since he was pretty certain I had CML.  I never took any Hydroxyurea.

[LivingWellWithCML]

Trey, that makes sense that it would be considered "outdated".  However, if a patient is diagnosed with high WBC but needs a week or two to get the BMB done and analyzed, Ph+ confirmed for insurance approval, etc., then isn't the best practice to start that patient on Hydro, so they don't keep climbing in the meantime?  Because of the cost, I didn't think that oncs had the liberty to start a patient immediately on a TKI without the results of a biopsy in hand.

[lindacarriere]

Thank you all so much for answering.  I feel much more confident.  I think Dan could be right about needing the PH+ diagnosis.  The Oncologist gave me the name of the three drugs (Gleevek, Sprycel and Tasigna) to look into.  He told us my husband would be on one of these.  So it makes sense he would be giving him at least something to get the WCB counts down in the mean time. 

I'm sure I'll be back after we get results on Wednesday with more quesstions!   I have also contacted my insurance provider as they have a program called "Best Doctors" which will guide me through getting a second opinion if we feel it is necessary. 

[PhilB]

You're right Trey, I did miss the third option - an old fashioned onc with strange ideas that you need to reduce counts before starting TKIs.  I couldn't agree more that that isn't doesn't make any sense, but as a stopgap pending BMB results / insurance approval it's definitely still a sensible option.

Flo, whichever drug you use to zap the white cells, you still have the same junk for your kidneys to clear out - hence the allopurinol that people are prescribed to protect them early on.

I very naughtily had a bit of fun with my onc when my counts came down to normal:

Okay you can stop taking the allopurinol now.

- No I can't

Yes You can

- No I can't

You don't need it any more, the Glivec is doing it's job well

- Oh, so the Glivec will have cured my gout will it?

Ah.

[Floa7]

Well I am off the allopurinal, hydroxy and just take the big G 400 now. My sister was on the allopurinal quote "for the rest of her life"

When I told her I was off of it. She questioned her oncologist last week and she is off  of the allopurinal now....

Flo

[Tedsey]

Hydroxyurea and Allupuranol is not unheard of before a definitive diagnosis.  It may be "out-dated" since TKIs have come on to the scene.  However, until there is a definite diagnosis of CML, it will knock the white blood counts down while pathology figures out what kind of leukemia presents.  It took 5 days in the hospital to diagnose me.  It was over the Thanksgiving holiday, so most people were gone.  I was given Hydroxyurea and Allupuranol because they were unsure what kind of leukemia I had.  My PLT were not traditionally as high as most CMLers upon dx, but my WBC were 180,000.  I don't understand why they kept me on H and A after my CML diagnosis was confirmed (they actually had me on the TKI and H & A until I asked if I had to keep taking Hydroxyurea & A, plus Gleevecc, (don't let this happen to you).  It is OK to go off H and A and start the TKI as soon as CML is confirmed.

As for being in chronic or accelerated stage, although your husband's WBC are high, I feel the oncologist is jumping the gun.  You will know when the results are back from pathology.  Until then, it is anyone's guess.

I understand how rough this time is for both of  you.  Please take care.

Tedsey

[Susan61]

Hi Linda:  As Phil said Welcome to the club nobody wants to join.  My situation was a bit different as there were no TKI drugs when I was diagnosed in 1998, but I was put on the Allopurinol in the beginning. Then when the treatment I was on did not work for me, I was on the Hydrea until I was able to start a TKI.  I started Gleevec back in 2000, and it has done very well for me, plus it was the only TKI available back then.  I am still on Gleevec to this day.  Let your husband know that CML treatment has come a long way since 2000.  You have a few choices now so they can find what will work for him.

     Please get back to us after your husbands appointment on Wed, and just ask any questions you may have at anytime.  Glad you joined us, because its hard on the family and friends also, to try to figure out where its all going.

You will learn a lot, and then it will be beneficial to your husband and you.  Whatever TKI drug your husband goes on, he will find someone on here who also takes the same drug.  Share anytime you want to.

Susan 61

[pamsouth]

Hi Linda,

I went for an annual check up which meant it was time for my labs, hadn't had any labs for three years.

The doc called the next morning and my platelets were over a million.

Doc had me call the cancer center to make an appointment for another lab. I asked why the cancer center, she said they  interpret them quickly over there.

So two week later had more labs and my Platelets had went from 1 million to over two million in just 2 weeks.  The WBC had went from 16 thousand to over 21,000.  So then I had to wait another two week to do a Bone Marrow Biopsy to get a diagnoses. After Biopsy I had to wait another 2 week to get the results.  Once I got the results that it was definitely CML.  The doctor said the 1st of the next month there would be a trial study starting of 800mg vs 400 mg of Gleevec.  So If I wanted to do the study I would not be able to go Gleevec until then.  So I went on the Hydroxyurea.  My platelets were over 2 million and climbing and the on the normal dose of Hydroxyurea they were still climbing, eventually I ended up on 3 times the normal dose.  When I finally went to the two hour spill on whether or not I wanted to do the study I decided not to.  I decided to just go on the Gleevec.  By that time my Platelets and White Cells were coming down nicely.  Although I didn't like the side effects of the Hydroxyurea and was more then excited to go on the Gleevec.  However I would not ever let them take by WBC counts down so low again, they got down to 1.7 and I got sick and went into the hospital for 3 days for iv of antibiotics.  my blood pressure stayed long for sometime around 60/30.  The onc said it was alright to have a colon scope I should never have done. it.  My husband had a colon scope done and they but him to sleep.  I remember when I was getting prepped I hear my nurse talking to another nurse, about my blood pressure being so low.  The nurse said tell the doctor and let him make the call.  Well the doctor went ahead with the scope, I was wide awake and it hurt.  I kept saying turn up that IV trip he said Ok but there was no difference.  The doc did cut off a small poly in a kink.  I was very upset that the onc told me to go ahead with the scope knowing my counts and blood pressure was low.  I was equally upset with the gastro doc who did it.  And more upset with myself for taking their advice.

That was back in 2005 that I was diagnosed and had the colon scope.  In may of 2007 I had my gall bladder taken out and the surgeon said it look like a perfect gall bladder.  however one of the pre test I took said the wasn't working right, something about the bile goes down this long tube another to another opening, but the two opening were not synchronized something like that.  Point being I often have attributed it to the Hydro and the Gleevec, but who know.  But Kidneys are now working 73 % is that from being 64 years old or is that from CML or the drugs.  I would guess it was the drugs, as I am sure I had CML many years before diagnosed.  Some doctor was carefully reading my labs.  Always get your labs they are yours. Plus I flew to MD Anderson and the Onc Specialist said CML has been working on you for years.  I have read some different interesting stories, about how we are born with certain pre dispositions. then a certain environmental factors.

If I were younger I think I would be a pathologists.

PamSouth

[Trey]

If any of us had been diagnosed one or two weeks later than we were, would it have been catastrophic?  No.  So why hurry to use a harsh chemotherapy drug that kills off many types of blood cells when a TKI can do it in a targeted manner, and therefore safer.  Who knows how many patients who end up with chronic low blood counts could have been spared that fate if the Hydroxyurea had not been used.  I personally believe that all chemo should be avoided if at all possible.  I just did not want to say this so clearly in this thread from a newly diagnosed family member, but now you know why I disdain Hydroxyurea as a CML treatment.  Certainly for anyone under 250K WBC Hydroxyurea is not necessary, and probably not even for anyone higher.  If the Onc considers the high WBC to be an actual emergency, then leukopheresis should be used instead. 

http://en.wikipedia....i/Leukapheresis

[PhilB]

It would be interesting to have data to see if there was any link between Hydrea use and later problems.  I have never heard of any evidence to support this, but I agree it might be conceivable.  As to delaying treatment, my WBC was well below 250k and I was rapidly losing my eyesight so I was very glad they took steps to bring my counts down as soon as possible,

[LivingWellWithCML]

I agree as well - it's definitely plausible, because clearly Hydro is a brute-force chemotherapy ... even though it's just a simple-looking pill.   @Trey, you bring up a very interesting point and I also wonder if it would've been safe for me to hang on for the extra 2-1/2 weeks while I awaited the insurance approval for the TKI.  If I recall, I think my WBC was climbing by at least 5,000 per day, because my routine bloodwork (T minus 2.5 days) was ~ 145,000, the ER test (T minus 0) ~ 155,000, and my CBC WBC before my biopsy (T plus 3.5 days) was ~ 170,000 ... of course, each of those CBCs were from a different facility/machine, so who knows.  That said, I was really thankful to be able to just walk out of the ER after a couple hours of blood testing instead of being checked into the hospital to go through leukopheresis, but clearly it would've been preferable to have just walked out with a bottle of Gleevec instead.

[Tedsey]

Were you given Hydrea?  It is a wonder, (and as blind as I am), my eyes were not effected with 180,000 WBC.  With my limited knowledge of research, except in the education field, maybe we could conduct a little "action research" -like inquiry of those who where on Hydrea and below 250K at dx.  Of course, the hypothesis would be that those dx with CML, who presented WBC <250,000 and given Hydroxyurea, or H and TKI, like moi, would have long-term issues with cell recovery post Hydrea while on active treatment for CML with TKIs exclusively.  Just kidding, but it would be interesting.

For example, my counts hit rock bottom as soon as I was put on Hydroxyurea and then even lower with H and Gleevec.  I was given a few breaks, but my counts never really recovered, even with zero drugs.  There was fear the CML would become uncontrollable if I was not on a TKI, so I went back on Gleevec with cell stim shots (some of you may remember my history).  It has not been until recently that my cells have made a rebound at just below low normal (I am post dx 2.5 yrs).  Except my PLT, an issue from the beginning, never really recovered.  But they were around 600,000 when I was dx.  Now I bounce from 20 to 70,000 any given day.

So, are there long-term effects of few weeks to a month on Hydroxyurea and cell recovery in CML?

[LivingWellWithCML]

That is the million dollar question.  I have to think it is different with every patient, because I really don't think that I have any lasting effects from 2 weeks of Hydro.  My platelets are normal, and my RBC and Hemoglobin made a nice comeback over the first few months of Gleevec.  That said, perhaps I would've recovered quicker without the intro Hydro .... I will never know though ...

[Pin]

I had 2 weeks of hydro when I was first diagnosed while I was waiting on approval for Gleevec. I think I was on a small dose though, 500mg (1 capsule) twice a day - it dropped my counts from 156k to 126k in a day and then basically stabilised there until I started Gleevec. My haemotologist wasn't concerned that it stabilised I think she was just making sure I didn't go up any higher while I was waiting. I hope there are no long term effects, I have a lot of other issues that I'd like to blame on something! My blood counts didn't drop too low during the start of treatment and are now into the normal range (10 months in) for white cells, platelets and red cells and have stayed there so far.