9 replies to this topic

[tolive815]

I was recently diagnosed with CML in January. I am 28 with 3 young children. I am scared aBnd at time afraid to express my feeling with my family because I don't want to scare them. I am currently in Phase 1. I am on Gleevec, Hydrea, and have had 2 infusions of Cytarabine, When I am one Hydrea my counts bottom out and I go into the hospital, When I am only on Gleevec my counts go to high and i have to go back to the hospital to bring them dawn. I was diagnosed on 1/16/2013, and was in he hospital in 9 days home a week then back for 5 days, home for a few weeks and back now and probably will go home today but how long will it be before I am back. We think we aren't responding to the current treatment and probably will be changing it hopefully outpatiently. They are also watching me closely thinking I might be trying to develop a for of Acute Leukemia or progressing to phase2 the acceleration phase. I just need help understanding this and somewhere to express my feeling. Also any information you may have to pass along I will greatly appreciate it.

I was previously asked more about my counts. Here is a quick run down:

1) On January 16th 2013 I went into the Er thinking I had the flu. My husband and my middle son both had the flu. Well first the flu test came in it was negative. Then the chest x-ray it was clear. i was then told that the doctor would be in in a few minutes to talk to me. When she came in she told me that I was being admitted due to my white blood cell count has very high and the oncologist and hematologist would be in shortly to talk to me. Of course I lost it but regained my composure enough to call my husband and talk to the doctors. My WBC was 298,000. I was very anemic and very low potassium. I was admitted straight to the hospital and was tols it was more then likely CML and had a bone marrow biopsy. Over the next 9 days I was hospitalized to bring my counts down. In the hospital I received my first IV Cytarabine, and started on Gleevec, and Hydrea.

2) On Superbowl Sunday I was admitted back to the hospital for an infected tooth, and my WBC was 1, My ANC was 0, My blood was very anemic again. I was told everything had bottomed out due to the Hydrea. So they stopped all of the meds and put me on just antibiotics to heal the infection, and let my body recover. I was admitted 5 days that time, sent home with a 1.5 WBC and 200 ANC. I was told by nurses that I should not have gone. But the doctor sent me home anyways. He was not my original doctor. But My counts did recover and on the 12th I was gave the go ahead to pull my tooth and I did on the 14th. Then I redid my blood work on the 19th. My WBC was 33. But everything else looked great. So we started only the Gleevec back.

3) On the 28th I went back to the doctor to do a checkup and my count was 125. So the doctor is thinking that I am possibly showing a resistance to the Gleevec but doesn't want to give up on it just yet. He admitted me on the 1st to get a 2nd dose of Cytarabine and restart the Hydrea and continue the Gleevec. As of right now if I bottom out or don't respond the way they want me too I will probably be changing medicine. I don't know to which one yet we will discuss that at my appointment next week. Also to be discussed will be the possibility of taking out my spleen, maybe getting a port, and if I am trying to develop AML too or move to Phase 2.

Please feel free to ask any questions that you may have. I am very open to options and advice too. 

Thank You

Tisha

[hannibellemo]

Tisha,

Welcome! I hope that you will find the answers you are looking for on this board. My first question is where are you being treated? Are you seeing a physician that sees a lot of people with CML? I ask because it seems like your onc is throwing  a bunch of medication at you in hopes that one of them will work. I'm not at all surprised that your counts have tanked, you are taking three medications that can all cause neutropenia (low white blood count), thrombocytopenia (low platelet count) and anemia.

I've reread your post and I definitely don't understand the need for the cytarabine and hydroxyurea is not really necessary in this day and age, any of the TKIs (our medication, like Gleevec, Sprycel, Tasigna, etc.) will bring down the white cell count. It's good that you are in the chronic phase! It doesn't sound like you have been on Gleevec long enough for it to do you any good.

I'm sure someone will reply that can give you more specifics than I but, Tisha, unless there is something else going on that you haven't written about you don't need all the chemotherapy. I don't think you will find too many people on here that have had that as a treatment for their CML. Definitely hold off on the port and the splenectomy!!!! Really, what is he thinking at this early stage!

Ask him why he thinks your CML is accelerating and why he thinks you are going into blast crisis which is what he means when he says your CML is behaving more like ALL or AML? Suggest he stop all the other medications for awhile and just let you take Gleevec or Sprycel or Tasigna. Has he done a point mutations test? Iclusig (Ponatinib) has just been approved for CML and sounds like it will be fantastic for those with difficult mutations.

If your doctor is not a CML specialist please get a second opinion. CML is a very serious disease but is easily treated for most.

Trey's blog (a link was given to you on the Newly Diagnosed site) is an excellent place to start to learn about CML. Don't put your faith blindly in your doctor, be a partner in your own treatment!

I don't mean to sound harsh, CML is a very rare leukemia and most doctors don't have a clue how to treat it, just good intentions. Good intentions are not enough.

Good luck and keep posting!

Pat

[Susan61]

Hi Tisha:  First let me say that Pat has just given you the best advice you could get right now.  Right now you probably cannot even think straight with all that is being done to you.  I can only tell you some of the things that I have experienced.  First of all when I was diagnosed back in 1998, we had no Gleevec or any other TKI treatment.  I HAD to go on Interferon along with cytarabine. They both knocked me for a loop, and my liver could not tolerate those drugs.  Then after they were stopped, I was put on Hydrea to keep those cancer cells down so they would not multiply.  I was on only Hydrea for a little over a year.  Then I did the Clinical Trial for the Gleevec.  You should not be on so many different drugs.  I always tell everyone that this is your body.  Go see another doctor who specializes in MANY cases of CML each year, who is up on all the latest treatments.  Make sure they have the proper phase you are in etc.

Trey is our main man here, who can answer anything you want.  He has CML like all of us, but he has studied everything there is to know about CML.  When they find out what works for you, you will start to have good counts in your blood work and then go from there.  Keep in mind that CML is very treatable, and you have so many choices now that I did not have back in 1998.  So much more is known now about how to stop those cancer cells and kill them off which they did not know years ago.

You came to the right place, and we are all here any time for you.  You can talk to family and get support, but talking to people who are living with this disease truly can relate to what you are feeling.

This past Dec has been 14 years for me living with CML, so please keep in touch and ask anything you want at all.

God Bless You!!    Your going to be okay.

Susan

[Trey]

The key to understanding your status is in the test results, especially the bone marrow biopsy  done at diagnosis.  You need to get a copy of that BMB report and relay what it says.  That would show whether you have CML or some other "acute" leukemia.  Your high initial WBC is not enough to diagnose an acute leukemia.  Many have had WBC at or above that level at diagnosis and have done well.  So if you would tell us what the BMB says we can help more. 

The Gleevec does not seem to be adequate so a change to another drug immediately would be advisable.  There is no reason to wait and see what happens, especially when there is concern about disease status. 

Your Onc should not have used Cytarabine as a starting drug.  And it is even worse to use Cytarabine along with Hydrea.  Of course that will crash your blood counts and send them on a roller coaster ride as they try to recover.  For that reason alone I would find a new Onc quickly since your current one does not know what he is doing.  You need someone who can assess your true disease status and treat you properly since there is a question about the state of your disease.  This is the most important thing you can do for yourself right now.

Otherwise this post provides basic information for those newly diagnosed with CML:

http://community.lls.org/thread/2600

[LivingWellWithCML]

Trey is right ... I would change doctors immediately; the course of treatment is not per protocol, and it doesn't sound like this doc knows what to look for in the bone marrow biposy.  A knowledgable onc (or a CML specialist) would use a safer method of getting your WBC counts or even just change you from Gleevec to another TKI (like Sprycel) and let the targeted therapy bring the counts down the "CML way" vs. the nasty brute-force chemo like Hydroxurea.  And equally as important is knowing what phase you're in ... if you are chronic phase (which is a very low blast cell percentage from your biopsy), then it's just a matter of getting you on the correct TKI medication and starting to monitor your response to treatment.  Many of us were diagnosed in chronic phase while having very high white blood cell counts, so it was just a matter of getting those counts under control with the right TKI and dosage.

This is a super knowledgable group out here, so please feel free to post more about your situation (specifics from your biopsy?) and you'll get terrific advice.

[CallMeLucky]

Cytarabine in chronic phase CML does not add up.  Either your case is more complicated then what you have been able to share or your doctor does not know what he is doing.  If you are in chronic phase, run as fast as you can to a CML specialist for proper treatment.  You should be on a single TKI drug; best bet would be Sprycel or Tasigna unless a mutation test revealed you have a mutation that would only respond to ponatinib.  Give it a couple of months to see if it works.

Now if you are in fact in an accelerated phase/blast phase or if you have an acute leukemia that is a different story, although I would still argue that if you have the Philadelphia Chromosome then you should be treated by someone who knows how to treat a PH+ acute leukemia.

Where are you located?  People on the board can suggest good specialists near you.

[ritan/]

wow. what a rough ride you're having.   i was diagnosed with 360,000 white cell count and was put on hydroxyurea for a while, along with gout meds. probably they shouldn't have done that. because my spleen was enlarged they likely should have done other things. but then they put me on just gleevec and everything went fine.   it sounds like your onc doesn't really know what s/he's doing. where is s/he? and what's his/her specialty?   i was initially treated by an older onc. with a palative care specialty. i've moved on to a onc who specializes in myloid diseases. i've been much more pleased with her treatment than i was with the older onc. i'd suggest finding a CML specialist quickly.

[Tedsey]

Dear Tisha,

I am so glad you found us.  I agree with Trey and everyone.  You need to find a new onc that knows what he is doing and pronto.  You may want to send out a post to see if anyone lives in your area who can advise you.  I am in Chicago.  It is very important to know for sure what exact kind of leukemia you are dealing with.  From what you write, it does not sound certain.  Nevertheless, your doctor is not following protocol for treating chronic phase CML.  It is clear that he has no experience with this disease.  Chemotherapy is never used to treat chronic phase CML.  CML does not respond to it and chemo could make it worse.  If there is clear proof you have chronic phase CML, refuse to let them give you any more Cytarabine!  As I have learned, the results from the bone marrow biopsy (karyotyping too) and a test called FISH are the most informative tests at this time. 

If you do have CML and your WBC increased on Gleevec, I agree with those who said you should switch to a different medication ASAP.  Your WBC were high at diagnosis, and it is important to switch to a "stronger" medication that will kill the leukemic cells quickly.  The drug Sprycel comes mind.  Like you, I was diagnosed (dx) with a high WBC.  Gleevec did not work well for me, (I was on it for 6 months), and it immediately caused me severe anemia, (but I initially was also on Hydroxyurea and a blood thinner too which knocked all my cells down).  Depending on the circumstances, the majority of oncologists experienced with CML do not use Hydroxyurea at all, or blood thinners.  Common practice is to prescribe a TKI only.  All I can say is it is no wonder you got an infection.  Thank goodness you are OK.  With such little cells of any kind in your body, it is a blessing things did not get worse due to this insane drug cocktail you were given.

I had a baby and a young toddler when I was first diagnosed. I had all kinds of stupid things done to me, so what is happening to you really gets to me.   It is a nightmare to go through this.  Presenting with such a high blood count, your WBC increasing on Gleevec, and having 3 little children to care for, I would mention Sprycel to your new oncologist (you MUST find one right away).  Since Sprycel is only a once a day pill, it will be easiest.  I don't know if you previously were running around carting your kids to soccer, skating, hockey, ballet, or whatever, or even if you work, but a once a day pill makes a big difference with a very busy life where others depend on you.  Since we, with CML, have to remember each day to take our pills, I would go for the path of least resistance if given the choice.

It has just been 3 years since my diagnosis.  The road for me has been very bumpy (this is somewhat unusual though).  And I had some very bad medical advice and a horribly "know-it-all" and inexperienced hem/onc.  Right now, my life is getting back to normal, and I am in good place with my PCR (the test that later determines how many leukemic cells are floating around).  I am running around with my kids again, going to the park, children's museums, the kiddy pool, etc.  For a long time, I could not do this due to extreme low blood counts and anemia, (and the advice of the evil onc that told me never to leave my house).  My wish for you is that all this will all soon pass and you will be on your way back to your regular, healthy and happy life with your family with this disease well managed.

It is so tough.  Keep posting if you need.  Feel free to vent or complain.  Ask questions.  There are so many people here who know so much.  I wouldn't have been able to survive the terror and sadness of it all without all my friends on this board.  Many smart and good people will hear you and respond.  I know what this is like, especially with young children.

Quick and deep healing to you,

Tedsey

[TeddyB]

I had a big spleen, and around 290.000 wbc at dx, i was just put on 400mg Gleevec and Allopurinol, and my spleen and counts normalized within weeks.

I would take the advice about going to see a specialist.

Teddy

[0vercast]

I see a few similarities between your situation and mine.

I was diagnosed at age 29 with a 300K WBC, and my other blood counts were also a mess(potassium, platelets, amemia, etc.). I too had some doubts about my oncologist's competence at first and I stressed of a lot over this detail. My body appeared to resist the Gleevec treatment for the first few months and he seemed rather unsure of what to do next. That didn't help my mental state one bit.

It's been just a little over a year now (dx: 2/29/2012). I feel pretty good on the Gleevec and my BCR/ABL numbers have plummeted.

Your body is going through quite the battle right now, so I would recommend trying to relax and trying to improve you health wherever you can; eat right, sleep well, exercise/lose weight, drink lots of water, etc. Don't stress out more than you need to; it'll only make this more difficult.