Father Diagnosed

[anslia]

Hi,

My father (age 75) was diagnosed with MDS - stage4 - on 7 May 2014. We are not sure of the subtype yet - because the Doctor did not say. Hopefully we will have that clarified 9 May 2014.

The bone marrow biopsy report is rather difficult to read/understand.

Anyway, he starts Vidaza treatment on Monday, 12 May 2014 and will receive three days of treatment followed by a 28 day break.

We have ordered/received the MDS booklets from the Aplastic Anemia & MDS International Foundation and found them quite helpful.

I have directed my mother to this forum, so she will probably soon be registering as a member.

We are happy that we found this forum as it seems to be quite informative and supportive.

[bailie]

I am sorry to hear your father's diagnosis. You will find a great amount of information here and many success stories.

I have not heard of the "Stage IV" classification (that could easily be my lack of information). I am in the middle of my 6th cycle of Vidaza. If you have any questions, be sure to ask. There are many very knowledgeable people (more so than me) here on this forum.

My Vidaza cycle has been seven straight days then a 21 day break.

[anslia]

I have not heard/found the Stage4 in any of my research yet. That is why my parents are to ask tomorrow about the subtype, ipss., etc. when they go for bloodwork as I feel there are still some missing pieces.

Anyhow, I am cautiously optimistic and hopeful that he has a positive response to treatment. My mother will definitely be asking questions, and I will probably have more questions once I get to Ohio.

However, I will say that I was expecting to see something about 'blasts' on the bone marrow biopsy report - but there is nothing according to my mother. Hopefully, they will scan & send the reports to me...so that I can do more thorough research.

I know that every individual's experience is different - but am curious about ways to deal with the side effects from Vidaza (if he should have any.) We like to be prepared as much as possible.

Thank you for your response.

[bailie]

I think you will find out that there are always "missing pieces" with MDS. That makes it difficult for everyone involved including the doctors. I have had no side effects of any consequence from the Vidaza, but again everyone is different. Be careful of constipation from the anti-nausea pills (and from the Vidaza).

You might start organizing the information. It helps to see the trends in the treatments from month to month.

The 3-day treatment with Vidaza is something new to me. I didn't know they had a 3-day treatment.

[anslia]

This will be a lengthy post recapping my father's battle.

My father entered hospice care September 18.

Although he was diagnosed with MDS on May 7; a series of hospitalizations and transfusions began March 7. What follows is a chronological sequence of 'events'.

7 Mar 2014 Hospital-diagnosis: Minor stroke, low rbc
8 Mar 2014 Hospital - Polyp removed (colonoscopy), Neuro Diagnosis:
Small blood vessel disease Hgb: 8.7
10 Mar 2014 Blood transfusion - Nurse: "abnormalities with red blood cells"
11 Mar 2014 Discharged - Hematologist will see in office. Hgb 8.8
18 Mar 2014 Appointment (Hematologist) diagnosis: Iron Deficiency (Will do
IV Iron Infusions. Blood Transfusion Hgb 11.8
25 Mar 2014 Appointment (Hematologist) IV iron treatment. "The anemia
is a direct result of the polyp. Should be better soon"
27 Mar Hospital ER Hgb 8 Given transfusion & admitted
28 Mar Transfusion "Blood volume down to loss from before polyp removal
takes weeks to build blood back up"

April

1 IV iron treatment
8 IV iron treatment
14 Hospital ER Hgb 7.3 Transfusion
15 Transfusion (2units) WBC 1.8 Hematologist in today and
schedules a BMB.
16 CT Scan. Liver shows elevated bilirubin
22 BMB- results in 7+ days Hgb 8.9
29 Transfusion HGB 8.1
30 another BMB - results inconclusive on previous BMB .

May

5 Transfusion Hgb 8.2
7 Diagnosis: "Myelodysplastic Syndrome Stage 4"
9 Hgb 8.3-Procrit "Oh...it is High Risk MDS"
10 Hospital ER Transfusion Hgb 7.9
12 Port put in (AM) Vidaza (PM)
13 Vidaza
14 Vidaza
16 Hospital ER Edema (Pulmonary) Hgb 9.1
17 Additional diagnoses: CHF, COPD, Stage III Kidney Disease,
Diabetes
27 Hgb 7.7 Plt 87 Wbc 2.9
28 Transfusion-2 units

June

9 Vidaza Hgb 8.0
10 Transfusion-1unit Vidaza
11 Vidaza
16 Transfusion-2unit Hgb 6.4 Aranesp (receive
weekly)
23 Hgb 9.3 Aranesp
24 Hospital ER CHF(edema) Hgb 8.2
25 Transfusion-2unit Hgb 7.6

July

5 Hgb 8.6
7 Vidaza Hgb 9.0
8 BMB Vidaza
9 Vidaza Hgb 9.1
13 Hospital ER Hgb 7.4 transfuse 2units/blood
14 "Biopsy reports inconclusive. We are treating him for the right thing,
and there will be no more BMB" transfuse 2units/blood
22 Hematologist out of office until Wednesday. Did not inform patient (Dad)
25 Hospital ER Dehydration Hgb 9.4

August

1 Hospital ER check blood levels Hgb 8.3
4 Vidaza Hgb 7.4
5 Vidaza transfuse 2units/blood
6 Vidaza
18 Hgb 7.5 transfuse 2units/blood
22 Hospital ER Edema
23 Wbc 2.7 Plt 102 Hgb 7.7 transfuse 2units/blood

September

5 Hgb 8.4 transfuse 1unit/blood
8 Vidaza (Hgb 10.5 Wbc 5.7 Plt 266)
9 Vidaza
10 Vidaza Hematologist: "Is Stabilized"
11 Hospital ER Hgb 8.5
12 Hgb 7.4 Wbc 2.4
Transfuse 1unit/blood
13 Hospital Dr: "Entering final stages, consider hospice"
Hematologist: "Not improving...is worsening...consider hospice"
14 Final Transfusion 2unit/blood
15 Discharge to "wrap things up"

My father's decline was rapid and for me- at least - there will always be some unanswered questions.

Best wishes and best of luck to all of those (and their family members) who are dealing with this disease.

[Neil Cuadra]

anslia,

Your summary makes it clear how much has happened in so little time. I'm very sorry that "consider hospice" became the only real choice. This must be a very tough time for your family and I hope you continue to have caring people around you, including the amazing people who work in hospice.