Jump to content


Photo

Blood work suggestions? Non-CBC, PCR, etc.


  • Please log in to reply
11 replies to this topic

#1 alc999

alc999

    Advanced Member

  • Members
  • PipPipPip
  • 37 posts

Posted 17 June 2015 - 02:20 PM

In two days I see my general practitioner for the first time since she gave me my initial CML diagnoses in January based on my CBC results. The main reason I'm seeing her is to have blood work done of the variety that my onc isn't doing (mainly the cholesterol that I wanted done in January, but was ignored because of my WBC).

 

So my question is this - What blood tests do folks here recommend I ask for? I know vitamin D is one, but what others?

 

Thanks so much!


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#2 JPD

JPD

    Advanced Member

  • Members
  • PipPipPip
  • 258 posts

Posted 17 June 2015 - 04:11 PM

liver panel, if your onc doesnt do it


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#3 Dona_B

Dona_B

    Advanced Member

  • Members
  • PipPipPip
  • 104 posts

Posted 17 June 2015 - 04:40 PM

Glutathione. The higher the number the better. I don't think it's a common test and it's a little pricey. As far as what to do if it's low, a good protein powder with hemp seeds, chia seeds, flax, blueberries or strawberries, greens, ... and a curcummin supplement. Thorne's Mediclear SGS powder (Amazon) is what my doc recommend. It is not cheap and I haven't been drinking it regularly but I try at least once a week. Btw, the doc is an Elevation Health chiropractor. There are not many in the US and mine is too far to see regularly but it was worth it to have a bridge between the medical and alternative treatment.


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17


#4 Sneezy12

Sneezy12

    Advanced Member

  • Members
  • PipPipPip
  • 67 posts
  • LocationMinnesota

Posted 17 June 2015 - 05:00 PM

Are you indicating that your Oncologist diagnosed CML on the basis of a CBC only, and not a Bone Marrow? Frank



#5 alc999

alc999

    Advanced Member

  • Members
  • PipPipPip
  • 37 posts

Posted 17 June 2015 - 05:25 PM

Sneezy12 - No, just saying that she's the one who initially caught that I had a leukemia based on a routine CBC, from there I went on to my onc who diagnosed me. I haven't been back to my GP since then, but am going back now to do the rest of the blood work that was halted in January when my WBC came back elevated.


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#6 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 17 June 2015 - 07:18 PM

Your ongoing CML tests should include:

1) PCR or FISH or both (this soon after diagnosis FISH is preferred)

2) CBC

3) Complete Metabolic Panel (CMP) which includes numerous tests (including liver tests, minerals, and should also test cholesterol -- ask the Doc)  So since your CML testing also should include cholesterol, that would not be needed from the GP Doc.

 

Regarding the GP Doc, until your blood normalizes I do not personally see the need to test for other issues unless you experience some specific problem.  Within the first 6 months or more the blood is going to be "abnormal" in a number of ways, so you don't need a bunch of tests to show you that. 

 

NOTE: I modified this because the title was a bit confusing.


Edited by Trey, 18 June 2015 - 10:20 AM.


#7 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 18 June 2015 - 06:07 AM

alc99,

 

I assume your onc is doing regular PCRs for BCR-ABL so I wouldn't ask my GP to do that one, or the FISH for the same reason. The rest, CBC and metabolic panel I have done everytime I see my onc so I don't have my GP do those either. In addition he does thyroid yearly. The only thing my GP does is a lipid panel once a year and come to think of it I get that done at work so my GP doesn't do any blood work.  :)

 

But those are the tests I have done.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#8 alc999

alc999

    Advanced Member

  • Members
  • PipPipPip
  • 37 posts

Posted 18 June 2015 - 10:50 AM

My onc does do a CMP just about every time I have blood work done for CBC and/or PCR, but it does not include cholesterol. It includes:

sodium

potassium

chloride

carbon dioxide

urea nitrogen

creatinine

glucose

calcium

protein 

albumin

bilirubin

phosphatase

ALT

AST

 

I do need to have cholesterol done, which is the main reason I'm going to my GP. It's why I went to see her in January, but my blood ended up not being tested for cholesterol, because my high WBC over-ruled everything.

 

Thanks for the suggestions so far on what else I might want to ask for!


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#9 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 18 June 2015 - 01:23 PM

Agree with all above.  Possible add-ons would be Vitamin D level, thyroid test, and anemia panel.  I think the last includes ferritin, iron levels, folic acid, etc.  B12 is a good idea, too.  If your creatinine/BUN/GFR are high, they might want PTH done.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#10 snowbear

snowbear

    Advanced Member

  • Members
  • PipPipPip
  • 176 posts

Posted 18 June 2015 - 04:27 PM

Does your ONC check your LDH levels?



#11 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 19 June 2015 - 03:48 PM

Snowbear,

 

A lipid panel should check total cholesterol, High Density Lipoproteins, Low Density Lipoproteins and triglycerides. Am I missing anything?


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#12 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 21 June 2015 - 12:32 AM

We always do an iron studies with mine as it picks up low iron storage (which I usually have unless I take supplements).

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users