MDS and Diabetes (and sugar)

[Bossywife]

THIS IS A LONG READ BUT HAS TO DO WITH SUGAR AND BLOOD CANCER.

My husband was diagnosed with RAEB 2 (although he is being treated as RAEB 1) two years ago. The date that his Platelet / WBC / RBC issues became apparent was much earlier.

In the Spring of 2008, my husband had been feeling poorly and was having frequent urination. He went to his doctor with the thought that he had Prostatitis (something his dad had and he thought it was the same symptoms)

He ended up being hospitalized with extremely low WBC & RBC, and Platelets at about 40. We also found out he had Type II Diabetes that day. Because he kept throwing the "Prostatitis" word around, the Doctors seemed to latch onto that and just assumed this was what was causing the low bloodwork, even though his prostate was not inflammed. He was discharged without a definitive diagnosis, with Diabetic medications and with instruction to have his bloodwork taken every 3 months for his Diabetes.

Between the years of 2008 - 2014 he struggled with his blood sugars and developed high cholesterol. He would often tell me that his platelets were still low, but that the doctor said "some people just have low platelets" and not to worry (I wonder if she would have felt the same if it were HER spouse? ... but I'm not bitter ). Up until the winter of 2014, I didn't worry, but then I started to notice changes in him, weight loss, and skin colour. I then started pushing and asking more questions and insisting on further testing. Finally he was diagnosed by way of 2 dry tap BMBs in April 2015.

Up until April 2015, his platelets, WBC, RBC and other tests were often low. It was a crap shoot each month, and the numbers were low all over the place.

In April 2015, he was started on a new Diabetes drug (Invokana) which basically controlled his Diabetes for the first time in years!! I also started giving him supplements (Vita B, Folic Acid, Cod Liver Oil). And his numbers improved to the point that his WBC and RBC #s were rarely out of the normal range. Of course, I took credit for this... and my miracle supplements. I have even posted about them here.

But then last month, we found out his Invokana would not be covered by our Benefits. So we are looking at a bill every month that we currently can't afford. A few months back I had entered all of his bloodwork into a graph I "borrowed" from someone on this forum (Thank you and I am sorry I forgot your name and can't find the original post). And I kind of had this feeling that maybe it was the Invokana that improved his bloodwork and maybe NOT my supplements .

SO in order to explain why I believe this is so, I have to explain how Invokana works.

"Invokana works by inhibiting sodium glucose co-transporter 2, a carrier that aids in the reabsorption of glucose into the bloodstream through the kidneys, which occurs during the process in which blood is filtered through the kidneys." So in effect, sugar comes in through the mouth and out through the urine. There is no absorbing into the body. (a diabetics DREAM!!)

So here's the short story:

Diabetes uncontrolled - hospitalized with life threatening blood levels, plts around 40
Diabetes semi-controlled - frequent low & borderline low levels, plts around 60
Diabetes controlled (and all sugar being diverted)- rare low levels and plts around 90

One of the other things I noticed and have posted about on here is that his numbers are always low after Christmas or bouts of bad decisions.

So I am currently gathering all my information to present to the Specialist in March to see if we can get special permissions for Invokana. But at this point, he's getting his Invokana, even if I have to sell everything I own, plus we will be taking steps to keep sugar out of our diet as much as possible. What I learned that SUGAR is NOT your friend.

If you do a "SEARCH" of these forums "Diabetes", you will come up with literally hundreds of matches. If you GOOGLE search Diabetes and MDS, you will find a ton of information and confirmation that diabetes and platelet disorders are somehow connected, but it is currently unclear how. So which came first? The diabetes or the MDS? Who knows?

Disclaimer: I am not a doctor or a medical professional of any sort. These conclusions are based solely on my experience with my husband's disease and my desire to keep him alive.

I have the utmost respect for doctors, but it is so hard to get a "complete" picture when you only have so much time to devote to each patient in a day, and I feel strongly that we need to keep track of our information and changes by way of spreadsheet (Thank you again, kind stranger!) or even just a journal. Pay attention to your body and how it reacts in certain situations, and above all, be open minded.

I will let you know what he says about my thoughts when we get back from our appt in March.

[bailie]

Bossywife, I apologize because I can't remember.

1) Does your husband have any genetic mutations?

2) Why aren't the doctors doing more bone marrow biopsies? I had a "dry tap" on my last BMB but the doctor just re-positioned the tap and five minutes later we had a good sample. From the counts you have told us, he needs to have a valid BMB. To ignore this border lines on malpractice in my opinion, especially since it has been going on for so long. I fear that when everyone gets serious about this it will be too late for him. I have had three friends who put the diagnosis off until it was too late for the doctors to help so I am very sensitive to waiting too long.

3) At the very least the doctors should be doing peripheral blood tests regularly along with CBCs. "For cases in which a bone marrow aspirate is not obtainable, most often ancillary tests can be performed on the peripheral blood in lieu of the marrow (e.g., flow cytometry, FISH and molecular testing)" (from AA-MDS International Foundation).

I applaud your efforts for sugar/diet control but that won't change any mutations he might have or the other underlying causes of his RAEB-1 (or 2).

[Bossywife]

When I asked if he had mutations, the Doctor said no. When I say "He is being treated as RAEB 1, I am saying this because of information I have gotten here from you

His final diagnosis states:

Blood, Dry tap marrow aspirate, and bone marrow biopsy showing:
1. Hypercellular marrow with panyelosis (cellularity 80%)
2. Megakaryocyte atypia
3. Focally increasted blasts (10%)
4. Moderate reticulin fibrosis (MF grade 2 out of 3)
5. Overal findings most suggestive of MDS RAEB 2 with myelofibrosis but clinical correlation is advised (see diagnosis comment)

Diagnosis comment:
Unfortunately, the lack of marrow aspirate for morphologic analysis limits the ability to assess for dysplasia and precise blast percentage, but given the increased marrow fibrosis, additional repeat marrow aspirate attempts are unlikely to be successful. A myelodysplastic / myeloproliferative overlap syndrome is also within the differential, particularly if the patient has splenomegaly. Cytogenetics results will be of interest but given the dry tap aspirates, results may not be obtainable. One potential justification for a repeat marrow biopsy would be to send a portion of the biopsy for karyotype. Regardless, it is strongly recommended to send a peripheral blood sample to the BCCA for JAK2 analysis.

**** I was told his JAK2 was negative, but now, after typing this out, I have just realized that there is no way they tested him for JAK2, because he never had a "repeat Bone Marrow Biopsy". I guess I have another question for the Specialist. /sigh (okay nevermind I read that wrong again. haha. Dangit)

Thank you so much Bailie!! I appreciate your comments and help so much!!

[Bossywife]

I already have the perepheral blood test question on my list Thank you!

[Bossywife]

I should make it clear that I do believe there is a mutation that is causing the platelets to be low. As he was a millwright for 30 years, I believe this was caused by Benzene in his work. (Varsol).

I don't think I could "cure" this by removing sugar from his diet. My goal is to keep him out of being immunocompromised and hopefully avoid early AML transformation.

[Bossywife]

I found this in the report:

Peripheral Blood Findings:

The peripheral blood film from March 16 shows moderate thrombocytopenia (54) with a striking number of large forms, some of which appear hypegranular. A single bare megakaryocyte nucleus is noted. Hemoglobin level is borderline decreased at 130 g/L with a normal MCV (89) and relatively mild nonspecific anisopoikiloytosis. Neutrophils are also borderline decreased (1.9) but exhibit no obvious dysplasia. No circulating marrow precursors are seen. only rare dacryocites are appreciated.

The peripheral blood film from March 30 shows essentially the same findings.

I also just noticed this on the Microscopy: CD61 highlights abundant megakaryocytes and CD34 stain shows blasts to be significantly increased (up to 10% in some areas) but no large clusters are present.

Could that by why they classed him as a 2?

[bailie]

Refractory anemia with excess blasts-1 (RAEB-1)

One or more cell types are low in the blood and look abnormal in the bone marrow. The number of blasts in the bone marrow is increased; but is still less than 10%. The blasts do not contain Auer rods. Blasts may be present in the blood, but they make up less than 5% of the white blood cells.

The chance of RAEB-1 turning into acute myeloid leukemia is about 25%. This type of MDS has a poor outlook and most patients die within 2 years.

Refractory anemia with excess blasts-2 (RAEB-2)

This type of MDS is similar to RAEB-1 except the bone marrow contains more blasts – between 10% and 20% of the bone marrow cells are blasts. The blood also contains more blasts: between 5 and 19% of the white blood cells in the blood are blasts. The blasts may contain Auer rods. Any one (or more) of the cell types can be low in the blood and look abnormal in the bone marrow.

The chance of RAEB-2 turning into acute myeloid leukemia may be as high as 50%.

This is from the American Cancer Society

[Bossywife]

So at 10% blasts, he's kind of on the edge. I would think they would have gone with RAEB 1 though. Maybe it's a typo? I remember at one point thinking he was RAEB 1, but the last time we talked to him, he said he was RAEB 2 but he was low risk.

[Bossywife]

Did you read the comment about why a third biopsy is likely to fail?

[bailie]

I have never heard in all of my research that " RAEB 2 was low risk".

"Regardless, it is strongly recommended to send a peripheral blood sample to the BCCA for JAK2 analysis."

**** I was told his JAK2 was negative, but now, after typing this out, I have just realized that there is no way they tested him for JAK2, because he never had a "repeat Bone Marrow Biopsy".

The testing for JAK2 would be taken from the peripheral blood test and not necessarily a BMB.

I remain somewhat confused by this situation and what the tests and diagnosis have revealed.