Disease progression

[Ann C]

Just wondering if someone could give me some perspective on the progression of my husband's MDS. Below are his stats in April 2012 at the time of diagnosis.

David age 72, dx RAEB-1 in April 2012, cytogenetics - good (no detected mutations), 6% blasts in bone marrow, hemoglobin - 132, WBC - 2.4, platelet count - 128, ANC - 0.9, watch and wait diagnosis


Here are the stats from his CBC in May 2013: David age 73, hemoglobin - 121, WBC - 1.8, platelet count - 117, ANC - 0.7 His doctor recommends the continuation of watch and wait.

Although he is a retired cell biologist, he rarely talks about his MDS. His doctor says that his numbers are slightly reduced since diagnosis. So I don't hear many comments on how he is doing. So any insights or comments about his progression would be most appreciated.

[gramous]

Hi ann,

how was the blast count in 2013....because for the rest,all the count are stables and like not bad (12,1 in hemo is low range of normal, white a little bit too low, platelets also....Why is he RAEB 1?
no mutation is also good prognosis, I 'think watch and wait is a good idee if the blast are not higher.
kind regards
béné

[Ann C]

"Why is he RAEB 1?"

Hi Béné,
Thank-you kindly for responding to my post. To answer your question copied above regarding the classification of RAEB 1 for my husband. On the Bone Marrow Biopsy report of April 2012, it said that the findings were consistent with RAEB 1. I believe that this would be due to the presence of 6% blasts in the bone marrow and that one or more cell types were low and look abnormal in the bone marrow. At the time of this BMB, it was not reported that the peripheral blood contained blasts. No Auer rods seen. Ringed sideroblasts are within normal limits. Hemosiderin stores are increased

His doctor has not suggested a subsequent BMB since this initial BMB in April 2012 at the time of diagnosis.

Thank-you again for your interest,
Ann

[Al's Wife]

Ann,

No two MDS or AML patients (my husband has unfortunately progressed to AML) are alike. I will tell you that your husband's numbers are much better than my husband's numbers were after a year. But my husband has had a bad prognosis from day one because of cytogenetics and low - as in no platelets.
I've seen some patients who were given good prognosis take a turn for the worse and others who have had poor prognosis do well for a long time. There are no exacts in this illness.
If I could give you any advice, it is to seek second and third opinions if you are not happy with your doctor; learn as much as you can about the disease but be sure you are reading current data; and lastly and most importantly, learn to enjoy each and every day.
My husband was diagnosed three years ago with MDS and because of his numbers from the bone marrow biopsy, he was immediately put on Vidaza with no results. He has been to Emory in Atlanta, M. D. Anderson in Houston, NIH in Bethesda, and Moffit in Tampa and has been on three different clinical trials. Last August he progressed to AML and our doctor at Emory gave him "weeks not months." Tomorrow we will begin our 10th cycle of Dacogen, which we think is what has kept him alive - or it might be the monthly blood transfusions. No one knows. A lot of people on this forum have done poorly on Dacogen but it seems to have kept my husband stable.
But as I said in the beginning, no two patients are alike.
There are so many new drugs in trial and I feel that a cure is not too far in the distant future.
Meanwhile, we have had many wonderful moments in the last ten months even though we have had to learn a new "norm." The bone-weary tiredness is one of the few symptoms my husband complains of. And while his quality of life is not what he would like, we have been able to enjoy trips together, he has been able to work on his antique cars (albeit in a limited manner), and we have had great quality time with family, despite what the doctor told us last August.
God bless you and your husband and hope this post will help you in some small way. Sorry there are no specific answers to your questions, but don't EVER give up hope.

[Ann C]

Dear Linda,
Thank-you so very kindly for taking the time to share your thoughts with me. You have helped me a great deal in gaining a perspective on disease progression with MDS. I am so taken by your warmth and concern. You have inspired me to reach out to others as you have done for me. What a blessing it is for me to be able to read Marrowforums and to connect with such thoughtful people.

I am sending all my best thoughts to you and your husband.
Ann

[gramous]

hi ann,

I'm totally accord with al's wife.... Don't watch the statistics because it is terrific but you can find here on the forum lots of people who are alive years after diagnosis.... Our philosophy is "enjoy the live" everery day... with up and down but always good moments together...Since the diagnosis, we are living a live that we never could have without desease because when everything gonna be right, you're total enable to see the much important thinks in the live : love, friendly, listening, understanding,....
It is now a new sort of live, greater in quality and more intense....If we have the chance that my boyfriend cure a day, we'll never live as three years ago, never.....
ENJOY every day.
kinds regars, béné

[wilmasdaughter]

As everyone has said, "wait and see" is kind of a buzzphrase for MDS patients, and yes it's frustrating! But there really isn't much else they can do. I have been trying to find "answers" for over 2 years for my mother - her numbers go up and down. I honestly didn't think she would last this long (she's 91) so I have finally come to peace with it, and am just grateful now for every day I have with her. Even her hematologist mentioned the other day that she's been his patient for two years now -- I think he was kind of surprised! So the best you can do is take each day one day at a time, count your blessings, and enjoy the time you have now. That doesn't mean you don't try treatments and options the doctor gives you, but it's best to come to terms with the up-and-down nature of MDS Short of a BMT, it's truly an uncurable disease. Take care.

[Ann C]

Originally Posted by gramous

hi ann,

I'm totally accord with al's wife.... Don't watch the statistics because it is terrific but you can find here on the forum lots of people who are alive years after diagnosis.... Our philosophy is "enjoy the live" everery day... with up and down but always good moments together...Since the diagnosis, we are living a live that we never could have without desease because when everything gonna be right, you're total enable to see the much important thinks in the live : love, friendly, listening, understanding,....
It is now a new sort of live, greater in quality and more intense....If we have the chance that my boyfriend cure a day, we'll never live as three years ago, never.....
ENJOY every day.
kinds regars, béné

Dear bene,
Thank-you for your beautiful message. Your boyfriend is fortunate to have you as a supportive partner.

I must say that for us too, life changed the moment that myhusband received his diagnosis. From that point forward, we too are savouring each moment. We have come to find a joy in every little action of the day. As well, I have been inspired by the people who write the messages in this forum. I am ever so thankful to Neil, Ruth and Vince who administer this site.
Ann

[Ann C]

Originally Posted by wilmasdaughter

As everyone has said, "wait and see" is kind of a buzzphrase for MDS patients, and yes it's frustrating! But there really isn't much else they can do. I have been trying to find "answers" for over 2 years for my mother - her numbers go up and down. I honestly didn't think she would last this long (she's 91) so I have finally come to peace with it, and am just grateful now for every day I have with her. Even her hematologist mentioned the other day that she's been his patient for two years now -- I think he was kind of surprised! So the best you can do is take each day one day at a time, count your blessings, and enjoy the time you have now. That doesn't mean you don't try treatments and options the doctor gives you, but it's best to come to terms with the up-and-down nature of MDS Short of a BMT, it's truly an uncurable disease. Take care.

Hi Jill,
Thank-you for your thoughtful message. You have helped me to gain a perspective. I agree - live one day at a time with enjoyment and appreciation! I am sure that you are a great source of comfort to your mother.
Ann