Progression of MDS

[Jean]

I was originally diagnosed early 2013. Previously I was treated for high platelets. After receiving treatment for a staph infection, my platelets started to drop. I have a very good hematologist/oncologist who was monitoring my blood work and immediately stopped the high platelets treatment. In April of 2013 I had my first bone marrow biopsy which confirmed MDS. At first it was just my platelets that were a problem, then my white cells dropped. Now my hemoglobin has become an issue. I have been on Dacogen with good results and approved for a stem cell transplant. I had a very bad summer with shingles and pneumonia with acute septic shock. I have recovered. Back on Dacogen trying to stabilize my blood counts. My hemoglobin keeps dropping to a point that I am anemic.

Does anyone have or know someone who has had all 3 blood abnormalities and what is thei status and prognosis regarding the the ticking clock?

[Anonymous]

Dear Jean, MDS may affect only one of the cell lines or it may affect all three cell lines as is your case. I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion if you have not done so already. It may be that your hemoglobin has dropped due to restarting the Dacogen treatment. It should be expected that blood counts may worsen with the first few cycles of treatment before they improve. The drug works by getting rid of the bad cells but unfortunately in the very beginning some of the good cells get caught up in it and this shows that the drug is working. Typically it takes up to four months or longer to respond to Dacogen. Nevertheless, you should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment.

Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us at 1-800-MDS-0839.

[JBC]

Hi Jean – I see that you wrote on Christmas evening. My husband had pancytopenia, with white cells being the biggest problem for a while. (RCMD) He responded well to vidaza for a very long time. I wish you well.

[stillhopeful]

Hi Jean,
My mother was diagnosed with MDS in September. All her blood levels are very low. Platelets were 8000 when first hospitalized and still will drop that low between transfusions sometimes. No rhyme or reason. Sometimes they can drop 20,000 or more in 2 days and other times they drop over 5 days. She now goes to cancer center 3 times per week. Her hemoglobin and hemocrit are also quite low. Her ANC is at zero.
They still say she is in the low risk class. I don’t quite get that. She started Vidaza last month and it’s not helping yet. Hopeful that it will in time.

[Wondering daughter]

Question regarding progression, my mother has been diagnosed with MDS for the past 5 years. In the last year we wrote the from just using Procrit to Vidaza. She has had a years worth of Vidaza with no positive changes. In the past month her WBC have gone over 85.4. She was hospitalized for a week due to high WBC and low sodium. She has been put on a new oral medication Hydroxyurea 500 mg twice a day. We are discontinuing Vidaza but continuing the Procrit. Can anyone tell me what all this means? I want to make her as comfortable as possible but also need to know what is coming.

[Tracy Rhine]

I am 45 was diagnosed with MDS 18 months ago though my symptoms and conditions started in spring of 2011. By the time I was diagnosed I was already high risk.
The only reason they tested me despite being aware of droppages in my CBC s since 2012 was because I had another condition or else I would still be walking around unknowingly that I had cancer.
My blood values are much lower than most posts I have read on various MDS web pages. And other than shortness of breath loss of energy and extreme fatigue I have no problems so if all these older people are having painful episodes there is probably a under lying other condition.
No matter how many transfusions of RBCs and platelets I receive my platelets every week are below 5. My hemoglobin is 7 my WBC is 1.4 my ANC is 0.03. Every week every blood drawl doesn’t change they can give me 50,000. Platelets and two to three units of RBCs. Always the same.
I was already below what I have seen as being called MDS final stage on one web page by the time I was diagnosed. And I got it more than 20 years before the average MDS patient. They treated me with Vidaza it was a wash didn’t get an improvement didn’t progress. I have decided to only get transfused when I feel it necessary really no one is promised tomorrow anyhow. So really to those over 65 just be thankful you didn’t get MDS at 45. I can’t work due to fatigue and all the limitations placed on me by my hematologist and the fact I spend three days a week at doctor’s office and two to four days a month admitted in the hospital.And social security won’t give me a damn penny. At least older people can get SSI.

[JBC]

So sorry to hear your story, Tracy. You are in a tough place. Are you a candidate for a stem cell transplant? Have you been tested to see if you have a donor match? Sending good thoughts your way…

[Thomas Kowall]

It sounds like you have CMML….where all three cells (red, white & platelets) are messed up. Get to a top notch Cancer Center, have a BMB and a FISH analysis to see how many mutated lines you have.

[Amy Holman]

Hello

I have just come across MDS and this site. I was wondering if anyone would mind telling me how long ago you noticed that your blood work first started to decline to lower than normal levels?

I have been very fatigued and multiple viruses for the past 1 to 2 years. Had all the tests and the doctors are saying possibly chronic fatigue syndrome but my platelets have always dropped to around 100 and only ever recover to 140 to 160 which is on the low side of normal (150-400). I’ve always been told that this is not a problem in itself. My mum had exactly the same symptoms for 2 to 3 years and had to give up work before becoming very ill suddenly and was diagnosed with Acute Myeloid Leukaemia (AML). She always had low platelets and felt similar to me before she became Ill. She sadly passed away 6 months after diagnosis. I know no one has a crystal ball but I wondered if anyone had experienced symptoms many years before MDS developing.

[JBC]

Hello Amy,

Once it became clear, in 2011, that my husband had a real problem, I went back to reports from previous physicals and charted his blood counts starting in 2003. The hematologist could then clearly see the slow decline in white cells, hemoglobin and platelets. Hubby had been originally treated by the family doctor for B-12 deficiency. In the summer/fall of 2011, bone marrow biopsies confirmed suspicions of MDS, specifically RCMD, refractory cytopenia with multilineage dysplasia. He had no symptoms – no bruising, no fatigue, and no illnesses. At first, the worst problem was the white count, specifically low neutrophils. We were told that a fever or pneumonia could be life-threatening. He responded well to Vidaza from 2012-2016. When that wasno longer effective, he had a stem cell transplant, unrelated donor in November, 2017. So we figure he had MDS for at least 14 years before needing the transplant. Best wishes, Amy. I am so glad you found the MDS Foundation site.

[tam]

Amy,
I am 63 and was diagnosed with MDS in 2013. When I learned of my disease I decided to go back to my annual physicals and found a complete blood count done in November 1991. My counts were low then. My doctor at the time attributed low counts to possibly my training for running marathons. He did not order follow-up monitoring or a biopsy at the time. My next complete blood count wasn’t until 1998 with a different family doctor. My counts were only slightly higher then but still borderline. From 1998 onward I’ve had a complete blood count nearly every year and have remained on the low end. It wasn’t until 2013 that my doctor decided to refer me to a hematologist who ordered a biopsy. I’m writing to let you know that I’ve had comparatively low counts for 26 years. Here are my counts from 1991 and 2017: platelets 134 vs 114, RBC 3.9 vs 3.8, WBC 4.0 vs 3.3, and hemoglobin 12.8 vs 12.8. It’s possible I’ve had this for over 26 years. During that time period I have not noticed unusual bleeding, higher than normal infections, or tiredness. Hope this helps.
Tom

[Amy Holman]

Thank you for your replies. I forgot to mention that im 37 and pregnant and my consultant picked up on my lowering platelet count so I’m going to be monitored every 2 weeks from now on and im under a rheumatologist for my non pregnancy related fatigue. So I will definitely ask about this. I have brought this possible link with my mother’s illness and AML with the rheumatologist and my GP but have always been dismissed as AML not being hereditary…but at least now I can keep an eye on things. My mother died age 53 so wasn’t old and when we looked back at her blood results in the year previous to her getting AML there were signs of her counts lowering but like you said they weren’t low enough for them to raise any flags and they put it down to other things. One of my sister’s is 30 and is regularly aneamic and could not donate platelets as she didn’t have a high enough count so I will mention this to her too.
Thanks again.

[salome]

Hi, new here. My husband (age 59 now) was diagnosed after having a severe infection of unknown origin in 2008 which had him hospitalized for 5 days. It was then he was told he had Diabetes Type II (AIC was 17) and low WBC, RBC, Platelets. he was pretty much at deaths door, with rigors and fever. He thought he was dying.

After he was discharged, he was on new blood work for his Diabetes every 3 months. His WBC and RBC were often low, and his platelets were always around 60-90. I would ask about it, and the reply was always … “meh, some people have low platelets”. Fast forward to 2014, and I noticed he was looking very thin and pale. He is an active guy, with an active job, he plays hockey and we live on a 20 acre farm with horses and dogs.

I insisted on a Biopsy at this point, and it was discovered he had MDS RAEB-1. He now has bloodwork monthly, and his blood work fluctuates at the low end of normal and often dips slightly below. His platelets are between 45-90.

We are on watch & wait, but will be heading for a Myeloid Gene Panel test in June, as his WBC and RBC #’s have been falling a bit more than usual. We are curious to see what happens. Has anyone else had this test?

His brother is a 100% match for donation, but the doctor doesn’t feel like this is an option at this time, as he is doing so well.

We notice that his blood work gets really bad if he doesn’t have his diabetes controlled.

[Janet DelCiello]

I was just recently diagnosed with MDS and have done a great deal of research. It appears that diet has a tremendous effect on prognosis / outcome. This would tend to indicate why your husband’s bloodwork is worse when his diet is not controlled. I recommend that you read “Beating Cancer with Nutrition”, by Patrick Quillin. I have started following much of his advice about a plant-based diet and have eliminated red meat and am eating large quantities of fresh fruits and vegetables. Additionally, sugar tends to feed cancer cells so I have eliminated most sugar from my diet also. I used to drink a glass or two of white wine with dinner and eliminated that also after reading about the effect of alcohol consumption on blood counts. Just some thoughts. Best of luck.

[Author]

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