Myelodysplastic Syndrome (MDS) classification and staging

Posted by barbeeh51 @barbeeh51, Jun 10 10:49am

Has anyone been given their classification of their MDS after they were diagnosed? I saw this info on the Mayo clinic website.

Barbara

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@barbeeh51, you're right

The World Health Organization divides myelodysplastic syndromes into subtypes based on the type of blood cells — red cells, white cells and platelets — involved.

Here's an excerpt from Mayo Clinic's Myelodysplastic syndromes information https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977

Myelodysplastic syndrome subtypes include:
- Myelodysplastic syndromes with single-lineage dysplasia. One blood cell type — white blood cells, red blood cells or platelets — is low in number and appears abnormal under the microscope.
- Myelodysplastic syndromes with multilineage dysplasia. In this subtype, two or three blood cell types are abnormal.
- Myelodysplastic syndromes with ring sideroblasts. This subtype involves a low number of one or more blood cell types. A characteristic feature is that existing red blood cells in the bone marrow contain rings of excess iron.
- Myelodysplastic syndromes with isolated del(5q) chromosome abnormality. People with this subtype have low numbers of red blood cells, and the cells have a specific mutation in their DNA.
- Myelodysplastic syndromes with excess blasts. In this subtype, any of the three types of blood cells — red blood cells, white blood cells or platelets — might be low and appear abnormal under a microscope. Very immature blood cells (blasts) are found in the blood and bone marrow.
- Myelodysplastic syndromes, unclassifiable. In this subtype, there are reduced numbers of one or more types of mature blood cells and the cells might look abnormal under the microscope. Sometimes the blood cells appear normal, but analysis might find that the cells have DNA changes that are associated with myelodysplastic syndromes.

@barbeeh51, were you given a classification?

REPLY
Profile picture for Colleen Young, Connect Director @colleenyoung

@barbeeh51, you're right

The World Health Organization divides myelodysplastic syndromes into subtypes based on the type of blood cells — red cells, white cells and platelets — involved.

Here's an excerpt from Mayo Clinic's Myelodysplastic syndromes information https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977

Myelodysplastic syndrome subtypes include:
- Myelodysplastic syndromes with single-lineage dysplasia. One blood cell type — white blood cells, red blood cells or platelets — is low in number and appears abnormal under the microscope.
- Myelodysplastic syndromes with multilineage dysplasia. In this subtype, two or three blood cell types are abnormal.
- Myelodysplastic syndromes with ring sideroblasts. This subtype involves a low number of one or more blood cell types. A characteristic feature is that existing red blood cells in the bone marrow contain rings of excess iron.
- Myelodysplastic syndromes with isolated del(5q) chromosome abnormality. People with this subtype have low numbers of red blood cells, and the cells have a specific mutation in their DNA.
- Myelodysplastic syndromes with excess blasts. In this subtype, any of the three types of blood cells — red blood cells, white blood cells or platelets — might be low and appear abnormal under a microscope. Very immature blood cells (blasts) are found in the blood and bone marrow.
- Myelodysplastic syndromes, unclassifiable. In this subtype, there are reduced numbers of one or more types of mature blood cells and the cells might look abnormal under the microscope. Sometimes the blood cells appear normal, but analysis might find that the cells have DNA changes that are associated with myelodysplastic syndromes.

@barbeeh51, were you given a classification?

Jump to this post

@colleenyoung No classification. My husband was just diagnosed and I'm just learning about the disease. I was aware of the info you posted about the different types. Is this something I can determine from the bone biopsy.
I did contact the oncologist about IPPM but was told that wasn't used.
My next question will be about the classification. I just wondered how common this was.
Thanks

REPLY
Profile picture for Colleen Young, Connect Director @colleenyoung

@barbeeh51, you're right

The World Health Organization divides myelodysplastic syndromes into subtypes based on the type of blood cells — red cells, white cells and platelets — involved.

Here's an excerpt from Mayo Clinic's Myelodysplastic syndromes information https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977

Myelodysplastic syndrome subtypes include:
- Myelodysplastic syndromes with single-lineage dysplasia. One blood cell type — white blood cells, red blood cells or platelets — is low in number and appears abnormal under the microscope.
- Myelodysplastic syndromes with multilineage dysplasia. In this subtype, two or three blood cell types are abnormal.
- Myelodysplastic syndromes with ring sideroblasts. This subtype involves a low number of one or more blood cell types. A characteristic feature is that existing red blood cells in the bone marrow contain rings of excess iron.
- Myelodysplastic syndromes with isolated del(5q) chromosome abnormality. People with this subtype have low numbers of red blood cells, and the cells have a specific mutation in their DNA.
- Myelodysplastic syndromes with excess blasts. In this subtype, any of the three types of blood cells — red blood cells, white blood cells or platelets — might be low and appear abnormal under a microscope. Very immature blood cells (blasts) are found in the blood and bone marrow.
- Myelodysplastic syndromes, unclassifiable. In this subtype, there are reduced numbers of one or more types of mature blood cells and the cells might look abnormal under the microscope. Sometimes the blood cells appear normal, but analysis might find that the cells have DNA changes that are associated with myelodysplastic syndromes.

@barbeeh51, were you given a classification?

Jump to this post

@colleenyoung I meant the The IPSS-R score categorizes patients into low, intermediate, and high-risk groups, which directly influence treatment timing, intensity, and monitoring strategies.

REPLY
Profile picture for Colleen Young, Connect Director @colleenyoung

@barbeeh51, you're right

The World Health Organization divides myelodysplastic syndromes into subtypes based on the type of blood cells — red cells, white cells and platelets — involved.

Here's an excerpt from Mayo Clinic's Myelodysplastic syndromes information https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977

Myelodysplastic syndrome subtypes include:
- Myelodysplastic syndromes with single-lineage dysplasia. One blood cell type — white blood cells, red blood cells or platelets — is low in number and appears abnormal under the microscope.
- Myelodysplastic syndromes with multilineage dysplasia. In this subtype, two or three blood cell types are abnormal.
- Myelodysplastic syndromes with ring sideroblasts. This subtype involves a low number of one or more blood cell types. A characteristic feature is that existing red blood cells in the bone marrow contain rings of excess iron.
- Myelodysplastic syndromes with isolated del(5q) chromosome abnormality. People with this subtype have low numbers of red blood cells, and the cells have a specific mutation in their DNA.
- Myelodysplastic syndromes with excess blasts. In this subtype, any of the three types of blood cells — red blood cells, white blood cells or platelets — might be low and appear abnormal under a microscope. Very immature blood cells (blasts) are found in the blood and bone marrow.
- Myelodysplastic syndromes, unclassifiable. In this subtype, there are reduced numbers of one or more types of mature blood cells and the cells might look abnormal under the microscope. Sometimes the blood cells appear normal, but analysis might find that the cells have DNA changes that are associated with myelodysplastic syndromes.

@barbeeh51, were you given a classification?

Jump to this post

@colleenyoung
Thank you for posting this info: The one below is mine. I did not realize there were that many categories.
Myelodysplastic syndromes with isolated del(5q) chromosome abnormality. People with this subtype have low numbers of red blood cells, and the cells have a specific mutation in their DNA.

REPLY

My husband was diagnosed with MDS/AML in 2023 with IDH1 chromosome mutation. Everything is low. Labs used to be twice weekly, now once a week. Chemo shots every 5 weeks and Tibsovo targeted therapy daily. He is 74.

REPLY
Profile picture for barbeeh51 @barbeeh51

@colleenyoung I meant the The IPSS-R score categorizes patients into low, intermediate, and high-risk groups, which directly influence treatment timing, intensity, and monitoring strategies.

Jump to this post

@barbeeh51 Yes, I did get my spouse's score of 2. So he is low risk for now. That was a relief!

REPLY
Profile picture for katgob @katgob

@colleenyoung
Thank you for posting this info: The one below is mine. I did not realize there were that many categories.
Myelodysplastic syndromes with isolated del(5q) chromosome abnormality. People with this subtype have low numbers of red blood cells, and the cells have a specific mutation in their DNA.

Jump to this post

@katgob I was diagnosed with MDS del5q in April . The oncologist put me on Lenalidomide 5mg one everyday. I broke out at day 12 have been using steroid cream since and my face will turn red occasionally and my whole body less frequently. Anyone else have these reactions?

REPLY

Yes. My husband has MDS 5q deletion. He developed raised welts and rash on his torso, arms, and legs when on Lenalidomide/Revlimid MWF at 10 mg and the rash occurred also on reduced doses. He finally was on 2.5 mg Revlimid MWF with a “cocktail” that relieved all the symptoms for two years. Then it failed to keep Hgb at acceptable levels.

You might ask your doctor about this: with each dose of Revlimid, take the “cocktail” consisting of one L-Lysine, one regular Claritin, and two 20 mg Pepcid pills. This remedy is used by Florida Cancer Specialists.

In my husband’s case Revlimid kept his CBC at satisfactory levels for two years, then it failed. He also got two years out of Vidaza before it failed; same with Procrit/Retacrit. Luspatercept/Reblozyl increased every important value on his CBC - Hgb, WBC, HCT, Platelets, ANC and others - for one month; then it all went bad again. Failure again.

He now gets two units of PRBC every week to ten days, ordered when Hgb falls below 7. We have a visit with Mayo Hematology next month, but the heme doctor already signaled that there probably are no other options.

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