7 replies to this topic

[JADELE02]

Let me start by saying this board has been  a huge resource for me over the past two months. I've been doing quite a bit of looking but this is the first time I've actually posted anything.  I'm a 28 year old female diagnosed with CML in the Chronic Stage on July 13^th. This all began with a visit to my PCP for a physical which revealed my white blood cells were 35,000 and platelets were almost a million. She immediately referred me to a hematologist/oncologist.  Since then has been a complete whirlwind filled with every emotion imaginable.  Now that things have settled (a bit) I'm having some questions mixed with a little bit of doubt about my current oncologist and just need advise from others in my situation.  The first issue that has been nagging away at me is about a week after being told I have leukemia I became extremely sick (104 fever, extremely sore throat, chills, etc) Not knowing if this was related to my condition I immediately called my doctor's after hours line since it was a Saturday . Unfortunately no one called me back until the end of the following day. By this point I had already gone to Urgent Care and was treated for a bad case of strep throat. Then when I brought this up to my doctor she had no clue what I was talking about. The on call physician never passed along the message that I had even called. This really bothered me but I let it go assuming maybe they were busy and it fell through the cracks. At my last appointment we were going over any issues I have been having after being on the medicine for a month and I mentioned that I've had random times where it feels like my heartbeat is irregular and I get short of breath. She did a chest xray but I haven't heard anything since.  It's possible that this could be anxiety given everything that's going on but I have no clue because no one ever got back to me and the test was done a month ago.  My other major issue with this doc is that I've only seen her a total of 4 times (this includes the appt that I was diagnosed). So 3 visits in July and my last visit was 8/23. My next scheduled appoitment is not until the week of Thanksgiving.  I thought this was unusal given I was diagnosed only a month prior but didn't question it since I figured she's a professional and should know what she's doing. But once my cousin who is a nurse questioned this I became a little worried. Since these are just a few of many issues I've had I finally scheduled appointment with a new onc scheduled for October 15^th.  Am I jumping th gun in seeing someone else? My family doesn't want me to rush and make a decision I will regret later but it seems like I am having a lot of issues considering I've only been in treatment a little over two months.  Also, is there a list or somewhere I can seek information to find a CML specialist or expert?   I really don't want to waste my time or the new doctor's time if he's not going to be any better than the doctor I'm seeing now.  Thanks for reading this long post.

[Susan61]

Hi Jasmine:  First let me say that I am sorry to hear you have CML, but you came to the right place for some answers and also friendship.

      So much of this does not make sense, unless you left out some things.  Did this Oncologist every get you started on a TKI drug, or do a bone marrow biopsy? You said this was all found back in July, and that you have seen this doctor 4 times.  More testing should have been done to confirm the diagnosis by your primary doctor.

    As for not getting back to you, it seems like a lot of doctors offices are getting very lazy about followng up with calls etc.  Do not ever wait for a doctor to call you.  If you go for a chest x-ray or any other test, call them the next day and ask what the status is of your report.  I also cannot stress enough that you should always get copies of any test including your blood work when you have it done.  Always say you want a copy, then keep a folder with all your information so when you see another physician you have everything right at your fingertips.

   I worked for a very efficient medical office.  We had 8 doctors with various specialties, and every patient got a call back even if their test was normal.  Your paying for this service, and you have to demand the proper attention.

  I would seek out a new Oncologist, and also let your Primary know that nothing has been done for you to this date.

  Maybe I am missing something here, but I feel this is where you need to start.  If you truly have CML, you have let them waste almost 3 months.  Then you say they are not going to see you till Thanksgiving.

  If you have more information, then someone here might be able to give you even more advice than I did.

  I wish you well with getting moving on the right track with the right treatment.

Susan

[JADELE02]

Hi Susan,

I left out a bunch of information here sorry. My physical with my PCP was July 1st had blood work done after complaining that i've felt more tired than normal. They called me later that day and said my blood counts were elevated and they requested I come back to retest. I went back on July 2 had additional bloodwork which still came back abnormal. She contacted the hemotologist who was able to get me in on July 5 for more blood work and bone marrow biopsy. A week later (July 13) I received my official diagnosis of CML and was prescribed Sprycel 100mg which I have been taking every since. Hope that additional info helps.

[Trey]

Generally, the drugs do the real work.  If your FISH and/or PCR results are dropping nicely, then that is the most important thing.  But any doc that does not seem to care enough about your health should cause a review of whether they are worthy of your trust.  A lot depends on whether you have other good options close-by.

You should see a GP doc about the heartbeat issue if it concerns you.  The Hem-Onc should refer you back to your GP.

You said your next visit to the Onc is the week of Thanksgiving.  Do not have a PCR blood draw done that week except on Monday.  Tuesday would be risky, and Wednesday would certainly be a very bad idea.  Otherwise the sample will probably spoil sitting around. 

[CallMeLucky]

Your story is very similar to mine, diagnosed at physical around 35K WBC, had the fever during diagnosis phase, had the heart palps after starting treatment.  The only difference is that my doctors have always been good about getting back to me.  It sounds like you are doing well but the reality is that you are going to be dealing with this for a very long time.  Often we may go to a doctor and not think much of their personality but work with them because it is usually for a short duration, maybe a few visits or only once a year, etc.  In your case you have to build a working relationship with someone you trust and someone who is going to meet your needs.  On that basis alone I would say if you are not happy with the doctor you are dealing with now, then you should change, and I would argue that it is better to change now than wait until later.  Why establish anymore history with this person that you will have to transfer to another doctor?  During the early stage of treatment is typically when you have the most questions, fears, and need to make decisions on treatment choices.  You need someone you feel good talking to about those things.  By two years it should be routine blood tests and test results, but right now you need someone you can work with.  So I say go ahead and make a switch.  If you advise where you are located somone in your area may be able to recommend somone.

[JADELE02]

Thanks to everyone that answered. I live St Louis, MO and pretty sure I'm going to be switching to Siteman which is our major cancer center.

@CallMeLucky - Did you find out what caused your heart palps? It doesn't happen regularly with me but I know for sure it started after I began taking Sprycel. I have no idea if this is a side effect or stress/anxiety related but the first time it happened scared the heck out of me.

[CallMeLucky]

Nothing definitive was determined but I attribute it to stress reaction and I think the TKI nudged it along too.  I hate to say it was stress because it has such a negative conotation like "it's all in your head" but the reaction was very real.  It was so real that I went to a cardiologist, had full stress test work up and halter monitor.  It was determined that my heart was fine and there was absolutely nothing physically wrong.  After getting back the test results and knowing that everything was fine, the episodes settled down.  that is why I attribute to stress.  I still get them occasionally but I have learned when they come on to stop breath deep and slow and wait for it to pass.  It still freaks me out.

I'll also say that while your situation is probably similar, do not go off my results.  You are likely fine, but you could have something going on so always be sure to discuss any of these side effects with your doctor so they can determine if you need any tests like mine did.

Good luck.