3 replies to this topic

[Samcerly]

Hi,  I am new here, added a post yesterday to a discussion, but was hoping to get some feedback on a few ?'s I have.  Little background, I was diagnosed 3/23.  I am 39, female.  Everything happened very quickly, I had bloodwork done tues, got a call from the family doc saying I needed to see an Onc right away.  My husband was on the phone the next am by 8 and had an appt for me by 3 in NY.  Initially due to the blast % in my blood the doc was concerned I was in the accelerated phase, but fortunately the % was lower in the bone marrow, so he feel's more confident I am in the chronic phase.  We should have the FISH results and the other genetic test they do with the bone marrow biopsy on fri, which I guess will tell him for sure.  Currently I am on 100mg Sprycel, allopurinol, revegel ? (to stop me from absorbing phosphorus),  and iron (they said i am 2 different kinds of anemic, one of which is iron deficient, I don't eat any red meat).

My questions are:  when I had that initial bloodwork done my cholesterol came back low, particularly my good cholesterol. It is only 18, when it should be at least 50.  Before this I had cholesterol done a few years prior with no problems.  Has anyone else had this experience?  Is it related to the leukemia? Any thoughts on it?  Also, I have read on here people saying they feel like their heart is pounding hard, is that related to medicine or the leukemia?  I ask because one of the things that led me to even get a script for bloodwork was a "forceful" heartbeat, my doctor thought it was my thyroid.  That was back in december at my yearly physical.  I never went for the bloodwork till 3/22, I wasn't concerned back in dec, but decided to go in March since I was SO tired and had a weird "stomach" thing going on that I thought I should have checked out, so i thought i'd do bloodwork first then make a follow up appt.  Now I know the weird feeling i was having was my spleen pushing my stomach off to one side.  Which brings me to my next question, how long did it take for your spleen to return to a more normal size and stop feeling "uncomfortable?"

Thank you so much for your input, It is very helpful as I am still trying to wrap my head around all this and figure it all out.

[Trey]

Welcome again.

The Renagle drug for phosphorus may not be a good idea.  The doc may have noted that your phosphorus was high at diagnosis, but the TKI drugs lower phosphorus on their own.  You may be getting a double dose of phosphorus lowering, which would not be good.  See side effects of Sprycel which say:

"Metabolic side effects including hypophosphatemia [low phosphorus] (up to 23%) and  hypocalcemia (up to 20%) have been reported.."

http://www.drugs.com...de-effects.html

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

The Allopurinol should not be needed after the WBC gets closer to normal (maybe about 3 - 4 weeks).

The spleen should start to shrink fairly quickly after starting the TKI drug (likely yours has already reduced by half or more).  But you may feel like the spleen is enlarged for quite a while due to residual effects of the organs having being pushed around.  Sort of a ghosting effect.

[Susan61]

Hi:  I must have missed your other posts, but you came to the right place for support and answers to a lot of your questions.  That is good that you acted on everything so quickly.  The faster you get treated, the faster you will get some good results and feel better.  I have had a problem with a low phosphorus for many years before I was diagnosed with my CML.  As for some of your other questions, I think Trey has helped you out with them.

Keep in Touch with us, and let us know how your doing.  We post all our questions no matter what is bothering us, even just to vent to release our anxiety at times.

    You said you went into NY.  That is where I did my clinical trial for my Gleevec that I have been on for 10 years now.  Gleevec was first choice back then, but now you have so many other TKI's available to you.  I went to New York Presbyterian Hospital for my trial.  The doctor I had then, has now retired.  There are some great CML doctors in New York.

    Do not try to absorb too much at once.  Everything will fall into place for you.

Take Care

Susan 61

[Tedsey]

My spleen went down in a few days.  It was normal in about a week.  It was very fast.  And mine was huge at diagnosis.  After being on the TKI for a short while, my phosphorus was almost 0.  I had to take it orally.  I have also heard that the drugs can deplete phosphorus.  However, it appears is comes back up over time for most.  It did for me.

The heart-pounding may be the anemia.  I think it would be too soon for it to be the TKI (but only my humble opinion).  Hemoglobin or HGB (which is generally used to determine how severe anemia is) carries oxygen through your body.  HGB is on your RBC.  It is protein that is basically a receptor for oxygen.  Its primary job is to move O2 up to your heart where your heart uses it and then pumps it out as CO2.  When you have a decrease in RBC, you have less HGB.  So, your body is starved on oxygen, more or less.  This causes your body to work harder, thus the heart pounding.  Some people experience shortness of breath or just trouble breathing.  It is a common symptom, and not to be taken lightly.  But don't let this scare you.  The body can make adjustments and still survive on little O2.  There are things your onc can do to raise your HGB if it is dangerously low.

Best of luck.  I know what a terrible time this must be for you. Just after dx is the worst time.  Then, most of us roll with the punches (but some of us have been very lucky and have less punches).  I am here if you need to vent or talk.  I also have 2 little children (2 & 4).  I have lots of experience with severe anemia.

Tedsey