The Gambler

[Rich D]

I originally found I had MDS in 2005. Could, and probably did, have it prior to then. Picked up on a routine CBC. Went to an oncologist/hemo guy who did a BMB. Looking at it he thought I had mild MDS. Gave me Procrit for maybe 8 months at 40 dose. He wanted to try 60, it wasn't working, had rotten insurance, and decided to get a 2nd opinion. This guy said, No, you don't have MDS. Went to a 3rd guy, he wasn't sure how to put his socks on.

Stopped all treatments for a few years, then my PCP had a CBC done and felt I should check with the cancer center again. BMB came out maybe just a bit better than my first one. Below is my diagnosis as part on my chart in their automated patient info section.

Oncology/Hematology Diagnoses




Diag Date

Type

ICD

Std Date

Description

Tx Setting

Status

Status Date

20111213 Primary 238.75 Myelodysplastic syndrome unspecified
20121002 Secondary 280.9 Anemia, iron deficiency, unspec
20121002 Secondary 585.3 Chronic Kidney disease, Stage III (mod. eGFR 30-59)

I took Vidaza subcu for the last 20 months. I did have the schedule changed from 7 days per month to 5 days. Worked just the same. My numbers HGB are basically in the 10's. That is the same as when I started basically. Below are labs for the past 8 months.

Result
08/19/13

07/15/13

06/17/13

05/20/13

05/08/13

04/22/13

04/10/13

03/25/13

WBC 9.5 7.2 7.6 7.2 6.1 8.2 6.3 7.5
ANC 7.1 5.5 5.5 4.8 4270 6.4 4139 5.6
RBC 3.34 3.31 3.24 3.29 2.96 3.18 3.03 3.39
Hgb 10.9 10.9 10.8 11.1 10.4 10.7 10.7 11.2
HCT 34.7 34.9 33.9 35.2 31.1 34.2 31.3 36.5
RDW 14.3 14.7 16.4 16.1 17.1 16.2 15.8 14.7
Plat 298 285 294 323 192 269 161 332
Lymph# 1.8 1.3 1.6 1.8 1330 1.3 1411 1.4
MONO# 0.6 0.4 0.4 0.6 244 0.5 347 0.5
BASO# 67 25
EOS# 189 378
Gran% 74.3 75.9 72.8 66.9 70.0 77.8 65.7 74.9
Lymph% 18.9 18.4 21.3 25.2 21.8 16.3 22.4 18.7
MONO% 6.8 5.7 5.9 7.9 4.0 5.9 5.5 6.4
BASO% 1.1 0.4
EOS% 3.1 6.0
Sodium 139 138 140 141 137 141
Potassium 3.8 3.6 4.0 4.2 4.6 4.1
Chloride 104 101 103 106 104 104
CO2 24 23 27 23 22 28
Glucose 143 306 166 130 145 125
BUN 14 19 23 20 20 16
Creat 1.3 1.2 1.2 1.4 1.7 1.2
eGFR NON-AFR. AMERICAN 58 64 64 54 43 64
eGFR AFRICAN AMERICAN 71 77 77 65 52 78
Calcium 9.4 9.4 9.2 9.1 8.8 9.4
Total Protein 6.2 6.5 6.2 6.3 6.4 6.6
Albumin 4.4 4.3 4.2 4.2 4.3 4.5
A/G 2.4 2.0 2.1 2.0 2.0 2.1
Globulin 1.8 2.2 2.0 2.1 2.1 2.1
Total Bili 0.42 0.39 0.29 0.30 0.25 0.34
Alk Phos 86 71 73 78 92 86
AST 20 16 17 18 18 16
ALT 23 20 20 20 23 20
IRON
TIBC
Ferritin
Erythropoietin
Iron Sat Percent
B12
Folate
MCHC 31.4 31.2 31.9 31.5 33.4 31.3 34.2 30.7
MPV 8.5 7.7 7.9 8.0 7.3 7.4
MCV 103.8 105.3 104.7 107.0 105.3 107.6 103.1 107.8

Anyway I got sick of getting around 14 shots per week in just my arms and stomach. Areas became very sore, and also felt rather crappy for about half of each month. Noticed I had a kidney deal which they had assured me was no big deal. I researched and found it can cause anemia, and anemia can be treated by a nephrologist. Told my oncologist my idea of stopping his treatment, and trying a kidney doc. Haven't done so yet, waiting for my blood test results which will be drawn and given to me this coming Monday.

Sorry for going on as I know only a few will understand some of this. Birgetta, and Neil are the two who seem to know quite a bit. Hopefully there are more of you that can pitch in. I know if my theory doesn't work, starting Vidaza again doesn't work too well. Might have to then go the transfusion route. Won't do that too long. Like to know your opinions, and what you might try for treatment if all the previous fails.

Thanks so much,

Rich

[Birgitta-A]

Hi Rich,
Since we have different values when we look at the kidneys in Sweden I can't tell you anything about your kidneys.

Your HGB, WBC, ANC and platelets are very good - eventually depending on the Vidaza treatment. Did you start treatment with so good counts?

Vidaza is only approved for high risk MDS in Europe. I have seen different results in low risk patients from negative effect to more than 50% of the patients responding.
Kind regards
Birgitta-A

[Whizbang]

Might be easier to read (thanks Neil)...

Rich you may need to align the numbers to the dates...

Results 2013	8/19	7/15	6/17	5/20	5/8	4/22	4/10	3/25
WBC		9.5	7.2	7.6	7.2	6.1	8.2	6.3	7.5
ANC		7.1	5.5	5.5	4.8	4.27	6.4	4.139	5.6
RBC		3.34	3.31	3.24	3.29	2.96	3.18	3.03	3.39
Hgb		10.9	10.9	10.8	11.1	10.4	10.7	10.7	11.2
HCT		34.7	34.9	33.9	35.2	31.1	34.2	31.3	36.5
RDW		14.3	14.7	16.4	16.1	17.1	16.2	15.8	14.7
Plat		298	285	294	323	192	269	161	332
Lymph#		1.8	1.3	1.6	1.8	1.33	1.3	1.411	1.4
MONO#		0.6	0.4	0.4	0.6	244	0.5	347	0.5
BASO#		67	25						
EOS#		189	378						
Gran%		74.3	75.9	72.8	66.9	70	77.8	65.7	74.9
Lymph%		18.9	18.4	21.3	25.2	21.8	16.3	22.4	18.7
MONO%		6.8	5.7	5.9	7.9	4	5.9	5.5	6.4
BASO%		1.1	0.4						
EOS%		3.1	6						
Sodium		139	138	140	141	137	141		
Potassium	3.8	3.6	4	4.2	4.6	4.1		
Chloride	104	101	103	106	104	104		
CO2		24	23	27	23	22	28		
Glucose		143	306	166	130	145	125		
BUN		14	19	23	20	20	16		
Creat		1.3	1.2	1.2	1.4	1.7	1.2		
eGFR_NAA	58	64	64	54	43	64		
eGFR_AA		71	77	77	65	52	78		
Calcium		9.4	9.4	9.2	9.1	8.8	9.4		
Total_Protein	6.2	6.5	6.2	6.3	6.4	6.6		
Albumin		4.4	4.3	4.2	4.2	4.3	4.5		
A/G		2.4	2	2.1	2	2	2.1		
Globulin	1.8	2.2	2	2.1	2.1	2.1		
Total_Bili	0.42	0.39	0.29	0.3	0.25	0.34		
Alk_Phos	86	71	73	78	92	86		
AST		20	16	17	18	18	16		
ALT		23	20	20	20	23	20		
MCHC		31.4	31.2	31.9	31.5	33.4	31.3	34.2	30.7
MPV		8.5	7.7	7.9	8	7.3	7.4		
MCV		103.8	105.3	104.7	107	105.3	107.6	103.1	107.8

Hopefully you can find the right doctor to keep you balanced...

Best of luck, and God Bless...

[tytd]

Hello Rich,
Just from looking at the numbers you have listed, it doesn't appear that your kidney function is bad enough to cause the anemia and Procrit usually helps the anemia in chronic kidney disease. Also the Vidaza doesn't appear to be improving your anemia. You did not list your B12, folate, erythropoietin, ferritin levels or bone marrow biopsy report. Do you know those results? If your erythropoietin level was greater than 500 you would likely not respond to Procrit.
Often one pathologist can read dysplasia on a bone marrow biopsy and another one may read it differently which may be why you got different diagnoses. I'm assuming that your bone marrow tests did not show any increased blasts or chromosomal abnormalities, is that correct?? If you have not already done so, I might consider seeing an MDS specialist, like someone at the Moffitt Cancer Center in Tampa, Fl if you live in Florida (or maybe just ask them to review your bone marrow slides). If you have a smoldering form of MDS which is in the low risk category than you might do well to just "watch and wait" with no treatment, especially since your hemoglobin does not now appear to be in the transfusion range anyway. Are you on any medications that might contribute to the anemia? Good luck tytd

[sbk007]

The second diagnosis:
20121002 Secondary 280.9 Anemia, iron deficiency, unspec

What is the Iron deficiency? I ask b/c your numbers look fine except the HGB
at 11 or so but that's not severe and this has been going on for 8 years.. Did the Onc mention blasts?, is it the same onc that diagnosed you 8 years ago Just wondering why he has you on Vidaza at all if its just the HGB that's a bit off, you'd have to be near 7-8 to get blood tx. What do you have to lose by seeing a renal specialist? even though you're seeing another specialist? you can see them both. I would encourage you to see a renal doc if you have CRF stage 3 regardless as you want to keep this in check.
All the best to you.

[DebS]

If they still want you to do the Vidaza, why not switch to an IV for awhile? I know those subq shots are a pain. But what we would give to only have to deal with those now!

I think the others are right to follow up with a specialist. This is something that you must keep on top of. It can turn on a dime!

Best of luck to you.
Deb

[maggiemag]

Hi there. I'm an RN, and I have a couple of observations.

- your heme numbers look good; not close to transfusion level. not sure why you are getting Procrit as my physician doesn't give it until Hb goes under 10
- I agree that your renal function isn't severe enough to cause anemia. Imo, you don't need to even see a nephrologist yet. Your gfr is good too. (I've had similar numbers but with a gfr of 34 and have not been referred ever)
- your MCV points to macrocytic anemia, and one of the causes for that is MDS. if you had iron deficiency anemia your MCV would run under 80-90 or so, which would be microcytic anemia and more likely to be from iron defic.
-your glucose is high, even if not fasting, and you didn't mention being diabetic or prediabetic
- like others, I would be interested in your detailed BMB reports, and would recommend seeing an MDS specialist
- agree that watch-and-wait might be appropriate if your heme numbers have always been like the above.

Hope this helps!
Mags

[triumphe64]

Have you considered a second opinion from Alan List at Lee Moffitt Cancer Center in Tampa?

[HughHC]

Rich

My numbers are somewhat similar to yours although some are better and some worse. Apparently my cytopenias have been below normal for approximately 12 years from the records that I have collected. I finally prevailed upon my hemo to further delve into this and let's find out what the real scoop was. I was set up for the BMB at Johns Hopkins and was told that I have MDS. This was 4 0r 5 five years ago. I did see a Dr. Steve Gore who delivered the news.

They do monitor my counts regularly. I go to JH once a year and also do the CBC once a year locally.

I have been told by the MD at JH that I definitely do not need to take on any chemo at this point.

I am in the process of moving to FL (Venice)ASAP when our house here in DE sells. I intend to connect with Moffitt in Tampa and hope to see DR. List. Since you seem to live in Brooksville this seems to be a good option for you. Moffitt, I have been told by the people at JH has a very good MDS program and Dr. List has headed it up.

It could be the place for you.

Best of luck