14 replies to this topic

[Susan61]

Hi:  I just had my blood work faxed over to me from my Oncologists office.  They do not call me if they do not see anything out of the ordinary, but I do see something.  For the first time they have Morphological Review performed on the bottom.  Then it says Slight Target Cells and Slight Elliptocytes, and I believe this is all related to red blood cells.  Everyone knows that I am not good with the numbers and terms, but I know somebody here especially Trey will explain. I think the Morphology tells the size and form of the cells, but its all Greek to Me.

    I am thinking they are just running a blood test with no idea I have CML, therefore, making notes due to the abnormals.  Am I going in the right direction here.

   WBC  3.8

   RBC   3.15  low

   HGB  10.6   low

   HCT  31.0   low

Platelets 96  low   They have been running around 127 to 121 for quite awhile

  Everything else was in range with the exception of Glucose and Kidney functions which are always off.

   Bun/Creatnine  17  In Range, but a Creatnine of 1.30 High    EGFR   42 which was 47   3 months ago.

   My other question is that they keep running a LDH on me this past year.  Never had it before.  Lactic Dehydrogenase Enzyme, and no idea what that tells them  Normal Range is 120-250    I run at 271 or a bit lower sometimes.

  This test did not include my PCR.  I do that in July.

   I am Diabetic and was told I have CKD. I have not been compliant with the proper diet, and that is foolish on my part.  So I know a lot of my numbers are reflecting this.  I also had a Fasting Glucose of 141   Normal is 65-99.  I need to get my head on straight and get back on track.

   I also noticed looking back on a lot of my old blood tests for comparison that they change the scale of where you should be, and thats why I do not hold right to the exact number when I read my results.  I have to ask What Is Right?

  Now I see my Primary doctor in a few weeks, and she will flip out I am sure with the Cholesterol and Trygliceride results.

  Any input is greatly appreciated to help  me understand some of this.

[PhilB]

Without resorting to Wikipedia I can't hellp with the explanations, but I did love:

 I think the Morphology tells the size and form of the cells, but its all Greek to Me.

I needed cheering up and that did the trick very nicely.  Many thanks.

[Susan61]

Gee Thanks Phil:  I thought you would be one of the people to have some answers. I do think I am partly right.  If they do not know I have CML, and see all this wacked out blood work they probably have me dead and buried already.

It was probably a note for the doctor to check things out.  The fact my Oncologist did not call either makes me think she did not see any emergency.  I know she would have called me if it was urgent.  I guess we will both learn something when Trey analyzes it all.  Glad I cheered you up anyhow.  Are you okay?

[Tedsey]

Dear Susan,

On top of everything else, it looks like you are a bit anemic (target cells, ellyptocytes--some of the shapes of RBC have more than one name like the WBC--this can throw a person off).  You were right when you thought they were RBC.  I just know this anemia animal from experience.  If you ever want to talk diet (not diets), please email me.  It has been my hobby and kinda like my religion for many decades.  I am the main cook for my family and we eat pretty much low fat and low calorie (but we love pizza every now and then---but I make a mean soy cheese, whole wheat one).  I can share recipes.  My father is also a diabetic, but refuses to take care of himself.  He is 71 or 72.  Nevertheless, he keeps on tickin' despite past thyroid cancer, weight issues, sleep apnea, narcolepsy, and being on the verge of prostate cancer.  It appears it takes a whole lot to bring some humans down.  I won't be surprised if he outlives me. 

I am so sad you have all these things to deal with on top of CML.  Nevertheless, you still remain there for all of us and are always a ray of sunshine on many of our dark days (especially for those newly diagnosed).

Here is to your long life, and a cure, and/or heavy alleviation of your physical maladies (and any other troubles you may endure).

Teds

P.S.  http://www.cspinet.org/nah/  This is a good and inexpensive magazine to learn how to eat well and understand nutrition (quick and easy reading too).  Just skip the silly articles by researchers that definitively claim that certain foods cause cancer.  As we know, it is not as simple as that. 

[Susan61]

Hi Tedsey:  I know I am anemic, and they have run tests on me for my Iron etc.  Like I said there were just a few things that were not on the usual print out of my blood work, and I picked up on it.

     I do not go into too many of my problems, as there are many.  My husband is also Diabetic, Sleep Apnea, Prostate Cancer Survivor, weight issues like me.  I just sat down and talked to him, and we both agreed its all emotional eating and just throwing the towel in with all the problems with finances, health, etc. 

    I always say that you have to get your head in the right place before you can make up your mind to do anything.

    I did just order that magazine you told me about.  With this hot weather right around the corner should help.  I hate the summer and the heat, and then I usually look for my salads and light meals.

   I do appreciate all your offers for help, and I will send you a personal e-mail.  Thank You for thinking I am of help to others.  I just try to let them know how long I have been living with this disease to encourage them.  I know you have had your share all this time too, and with younger children.  Your a inspiration to people also.

Again Thank You

[Trey]

Your morphology (cell sizes & shapes) is OK.  "Slightly" never hurt anyone.  You have mild anemia.  You need to keep an eye on the platelet counts.

But I am more "concerned" about your kidneys.  All the tests you mentioned (eGFR, Creatinine, LDH, etc) show poor kidney function.  Maybe you are monitoring this closely -- that would be a good idea.

[Susan61]

Hi Trey:  The platelet count is what is concerning me.  I have had this eGFR problem for a very long time.  I did not know what the LDH was, and that has been running in that range for awhile now also.  I have to call my Oncologist tomorrow, because they sent me the blood work and I have not spoken to her.

     I am actually wondering if I need to cut back to 200mg. of Gleevec like you.  I am just in such a mood with everything, because I have been doing so well.  Now I have to see my Primary in a week, and I am sure she is going to be all over me with the Cholesterol and Triglycerides. 

   My WBC and RBC have been in this range now for years.  Those counts are nothing new to me, and thats why I thought maybe the lab was just putting out a warning to the doctor, not knowing I have CML.

   Thank You for answering my questions.  I will pull some of the old blood tests to check numbers. I have never had the LDH done, until I started to see the new Oncologist 2 years ago.

[pammartin]

Hi Susan,

I admit to total ignorance when it comes to most of the testing we have, but wanted to tell you I am thinking of you and I hope you find answers to your questions.  I see you have many replies from credible sources, I am glad you are contacting your doctor tomorrow and hopefully you can reduce your Gleevec and your platelets begin to rebound.  Best of luck on your search, please keep us posted and share what you are going through.  You have helped so many people here, including me, we are here for you also.

Take care

Pam

[Susan61]

Hi Pam: I was just getting ready to call it a night, and I saw I had messages.  Thank You So Much.  I just need some prayers right now. Been going through a lot of different things, and now this problem.  Not sure what the doctor will suggest.  So many people are tellin me to cut back on my dose of Gleevec, but not my doctor.  I just keep track of all  who have, and still maintained their response.  I meant to ask Trey where he was at when he cut back to 200mg.  I think he was at PCRU.

     Its all very confusing and scary at times, and thats why I try to help others as they help me.

    Well I will see if I can get a hold of my doctor tomorrow for some answers.

   Thank You Again

Susan

[GerryL]

Hi Susan,

Just on your comment about your doctor not mentioning the possibility of cutting your dosage back - I doubt my doctor would have considered it if I hadn't mentioned it to him. You could talk to your specialist about a reduction to 300mg to start with and if that goes well for you, then go down to 200mg like Trey.

Take Care

[pamsouth]

Susan,

Have you thought about lowering dose to 300mg Gleevec, before trying 200mg.  Perhaps your CML counts would still stay PCRU and you other counts would come up to more of a normal range.  The platelets and the GFR / CKD would worry me a bit.  Maybe being anemic is making you tired and therefore causing other problems. It's a vicious cycle.  I know you said your counts have been low for awhile, but was wondering if they continue to be low over a long period of time, well maybe that is not good in another words perhaps eventually you would have to go on a dialysis, hope I am not scaring you, as I am not a doctor, but for me that would cause me a great concern.  I think there are some on the board who have low GFR and high creatnine who are not on dialysis and would know more about it then me.  I know when my son was in the hospital last year for 88 days and in ICU for 33 he was on a continuous dialysis for 30 days, the doctors would say, were not worried about his kidneys, he can live on a kidney dialysis, but if we don't get rid of the infection in his lung he could die.  Once he was off the medicine, his counts went back to normal and he has never had to have another dialysis. I do think they were experiment with him a little.  But I do think that is the way they look at things, you live with a kidney dialysis.  But if you can lower your dose and correct your kidney counts, well that is what I would want.  But that is just me, that doesn't mean it is the right thing for you.  Who knows! 

Will be anciously waiting to hear what your doctor things and what you decide.

Prayers, Pam, hugs xoxo

If you doctor doesn't want to try lowering your dose, she may suggest moving to one of the other drugs, that seems to be the trend theses, days.  I don't know how comfortable you are with your doctor in challenging her a bit that you really are adamit about going to a lower dose of Gleevec as least before you consider changing drugs.

When you hear from your doctor please let me know what she said and how you handled it.  I recently switched doctors and basically in the end told his onc nurse this is what I am willing to do, if the doctor is not on board with me that is fine, I just need to know to make other arrangements.  The nurse called me back and said as long as I come in ever 3 months and the number stay in a stable range, the doctor will go along with your wishes.  When I went to my prev onc I was PCRU until the lab changed over to IS, then my labs were all over the place, I don't think it had anything to do with my counts only the way the lab had changed the way it was doing things.  There were other people posting with the same problem.  My new onc said he had another new patients complaining about the exact same thing, his labs were previously sent somewhere down south. 

I think the doctor still wanted to change me over to another TKI but we have only done one lab, at consultation we had discussed 3 labs 3 months apart and he would not go by the guidelines as long as I stayed stable.  Believe me I was going to hold him to his word!!!!!

[PhilB]

Thanks Susan, I was just having a bad day.  My medical knowledge pretty much starts and ends with CML I'm afraid.

I would like to support what others have said thay you MUST look after yourself.  You are our poster child for long term survival and so you are not allowed to do anything silly like letting your diabetes get out of control.  Your posts to newbies are a wonderful affirmation of hope and a vital part of this support network.  Take care of yourself.

Phil

[Susan61]

Hi:  I put a call into my doctor this morning, but have not heard back.  The nurse told me that she did see my blood work, and signed off on it with no concern apparently.  I pulled out all my reports, as I save everything.  I went back as far as 2008, and my eGFR has bounced between 43 and 58 for the past 3 years.  I have also had Platelets down to 111, and then they came up to 168.  My biggest thing is I have to take care of my Diabetes better, and see how the kidney functions go.  I think everything threw the next thing off.  I will let everyone know what she says when she calls.

Thank You for all the responses.  I cannot say much more until I speak with her.

[pammartin]

Hi Susan,

Thanks for the update, we will be waiting to hear from you when you hear from your doctor.  Hope you are having a peaceful day.

Pam