MDS in older patients

[txgirl]

My father was diagnosed with MDS in December '07. He is 84 years old and having a hard time dealing with getting rbcs every other week and platelets every week. He has atrial fibrillation as well. He did take Revlimid for a while but it did not help. His only treatment right now is aranesp which helps a little with the hemoglobin. He is becoming depressed. Does anyone out there have experience with MDS at his age?

[jaygard]

My mother has it and she is 62..
At 84 you father only will be able to take drugs for his condition. As there is not cure for this. Except Bone marrow transplant.. At his age they will not do this..

http://www.marrow.org/PATIENT/Undrst...MDS/index.html

I am sorry about your dad.

[Ruth Cuadra]

Welcome, txgirl, to Marrowforums. As so often happens when someone new joins our group, we are sorry you have to be here but glad you have found us.

The diagnosis of MDS in someone your father's age calls for a much different response than for someone who is much younger. Up until the last several years, MDS was known primarily as a disease of older people but now, with better techniques resulting in more diagnoses, there is some thought that we will see more and more MDS as the population ages.

But this does not mean there is nothing that can be done to help your father maintain his quality of life with a minimum of intervention. The prospect of weekly or biweekly transfusions can be very daunting. Your father and his doctor need to try to figure out what blood counts he can live with comfortably and when he really needs transfusions. Some people need transfusions when their red counts are below 10, some can wait until they are down to 7 or 8. His atrial fibrillation will be a consideration here. The same is true for platelets, where counts below 50 or even 20 may not pose any problems for your father.

Do you know anything about the specific category of MDS that he has? This information would be based on the results of his bone marrow biopsy and might help you learn more about what the progression of his MDS might be. The Aplastic Anemia & MDS International Foundation has a lot of very useful information about MDS for patients and for their families and caregivers that would help you understand this disease and what to expect.

On the personal side, try to help your father understand that you know he is sad and possibly scared. Be sure he knows you are ready to help him but let him stay in control as much as possible. I hope you'll feel free to post your questions and concerns at Marrowforums. There are many very caring and well-informed people here to help you.

Regards,
Ruth Cuadra

[txgirl]

Thank you both for responding!! It helps just to know there is someone out there going through the same things. I have really gotten a lot of good info from marrowforums! The oncologist originally said my dad had the deletion 5q variety of MDS. I have devoured all of the info I can find on MDS and still feel at a loss to help him sometimes. He has platelet counts that have been down to 7 but are now transfusing below 30 and transfusing red blood cells when hemoglobin is below 9 or so. He seems to forget or not want to remember the ins and outs of this disease and seems to frequently ask "why" on many aspects of MDS. He is also struggling with losing independence due to not being strong and alert enough to drive. We are trying to let him be as independent as we can, but still be safe. He also just had a reading of 2003 on his ferritin level. He is not sure if his doctor is going to treat him and I haven't had a chance to call to see yet. I was wondering about the risks associated with treating the iron overload.

[Julie J]

How long was your Dad on the Revlimid? We were told it would take at least 16 weeks to determine if it was working. My husband has 5q- type MDS and is about half way through the 16 weeks. He gets blood counts and a shot of Procrit every week. He was on Aranesp but it seemed to stop working.

Where is your Dad being treated?

[txgirl]

Hello Julie,

Sorry about your husband. Hopefully he will have better luck. My dad is being treated in VA at Peninsula Cancer Institute. They are very kind and caring. My dad had to stop taking the Revlimid because his counts were way to low and he started haivng nosebleeds and other complications. He was only taking a reduced dose as it was and was on it for nearly the 16 weeks, but had to take some breaks in the middle due to low platelets. This is all probably due to his age.

[Julie J]

At first all his counts went down and they took him off a week and restarted at 5mg every other day. They wanted to see if his platelets started to come back. He never got to the point of having a transfusion of platelets.
He had to go off for two weeks because of pneumonia and has only been back on 2 weeks so I am anxious to find out his counts. His platelets have dropped again.

A large part of having MDS is it is a chronic condition and a person is always having to deal with it. We feel like we are on a very short leash. If your Dad has been independent it is a big loss. It is a lot to learn when you get a disease you never heard of before. I go to all the appointments as it takes two of us to remember most of what we have been told.

I wish they could keep his RBC up in the 11s but he hovers around 9 and gets transfusions when it gets done close to 8. He also feels cold all the time.
We went to a forum about MDS and met several people who have had more than 200 transfusions. I don't know much about when to treat high ferritin. We may have to find out. Julie

[Neil Cuadra]

Originally Posted by Julie J

We went to a forum about MDS and met several people who have had more than 200 transfusions. I don't know much about when to treat high ferritin. We may have to find out. Julie

Julie,

Deciding when treatment for iron overload is necessary depends on individual circumstances. But it's important that anyone who is getting regular transfusions be tested so treatment for iron overload can start before it has a chance to cause serious damage. See our Iron Overload page for other information and links.

[Donna E]

My Dad has had this for years and is now 71 years old. He is on a drug called Vidaza and we are waiting to see how that works. My Dad has been battling this illness for so many years now. He now needs blood transfusions every week and sometimes every other week. I know this is hard but all we can do is surround our Dads with as much love as our hearts are able to hold and let them know we are there for them . . . I have committed myself to make people aware of this illness and am trying to channel my frustration towards helping young people having babies realize that they should bank their baby's cord blood. Please share my web site www.cordofhope.com with anyone you know who is of child bearing years. Down the road I pray that stem cells from umbilical cords may be able to treat at least the young who get this disease.
Know I will keep you and your Dad in my prayers . . .

[txgirl]

Thanks Donna,

I agree about keeping our dads surrounded with love. It is just so heartbreaking that there isn't anything we can give but listening, encouragement and prayers.

[Donna E]

I went to see my Dad today and he is experiencing awful pain right now and will be going to the hospital most likely tomorrow. I feel so frustrated and helpless watching him go through this and can only find comfort by becoming committed in my mind to this disease and finding a cure one day. Now that I have found this forum, I really don't want anyone to feel alone in their struggles with MDS. For years (before finding this site) that is how I felt. We can only be there to love and love and love . . . Please give your Dad a kiss for me. I will pray for both of you tonight . . .

Donna

[txgirl]

Donna,
I am so sorry to see (from your other post) and hear about your Dad's painful feet and hands. I will pray that relief comes soon and in abundance! My dad is also having trouble with swollen painful feet, but it appears to be from excess fluid and the Lasix not being able to pull enough liquid off. Your dad's sores just appear to be something else. Thanks for the support. I agree that we all feel the magnitude and loneliness of this disease and all of its associated problems at times, but marrowforums does help us realize we are not alone!

[cjfaust]

My Dad was diagnosed with aml last November at the age of 90. Somewhere along the way it was changed to cmml. Today, it became acute leukemia. Previously, it was just his read blood cells and transfusions help greatly. Now the concern is his white blood cells and I am sooooooooooo confused!

[Neil Cuadra]

Originally Posted by cjfaust

My Dad was diagnosed with aml last November at the age of 90. Somewhere along the way it was changed to cmml. Today, it became acute leukemia. Previously, it was just his read blood cells and transfusions help greatly. Now the concern is his white blood cells and I am sooooooooooo confused!

Hello, cjfaust.

AML is the same thing as acute leukemia, so the diagnosis alternated between that and chronic myelomonocytic leukemia (CMML). They and the other forms of MDS are related, and the classification schemes are used to categorize treatment studies, make informed decisions about treatment, and give us some idea about expected survival.

Given your dad's age, treatment choices are limited, so the doctors may recommend only supportive care (transfusions) rather than aggressive drug treatments that could attack the disease but could be highly risky or reduce quality of life. What have the doctors suggested?

There is a good summary of the types of MDS, including CMML, at this Leukaemia Research Fund page. I particularly recommend that you read the Appendix about the International Prognostic Scoring System (IPSS) and that you ask your dad's doctor what his IPSS score is (low-risk, intermediate-1, intermediate-2, or high-risk), to give you a realistic assessment. Remember that statistics you read in charts apply to groups of patients but don't tell you what will happen to any one individual.

[Steve Kessler]

Hi txgirl,
I'm only 69, but I worry about how my family will get along without me. I'm sure your dad has similar thoughts. At his age, MDS will progress fairly rapidly. Perhaps the thing he can use most is for his family to know him in a caring way. It may help to ask him about his experiences as a young man, his courtship, his triumphs and regrets, anything that will provide loving memories. I have also written an ethical will for my family. It is not binding, like a normal will, but it pases on more than property. It expresses my core beliefs, values and purpose in life and my hopes for my children and grandchildren. Of course, do everything yuo can medically, but also take care of the soul.

[Donna E]

Originally Posted by txgirl

Donna,
I am so sorry to see (from your other post) and hear about your Dad's painful feet and hands. I will pray that relief comes soon and in abundance! My dad is also having trouble with swollen painful feet, but it appears to be from excess fluid and the Lasix not being able to pull enough liquid off. Your dad's sores just appear to be something else. Thanks for the support. I agree that we all feel the magnitude and loneliness of this disease and all of its associated problems at times, but marrowforums does help us realize we are not alone!

Hi, I am just checking in on you to see how you and your Dad are doing and to give you an update on my Dad. The wounds on his feet and hands are Impetago (sp?). They are now cleaning his wounds 2 times a day and wrapping his hands and feet. Dad's white blood cell count is now down very low and his platelets are extremely low. At this point, I don't see much more they can do for him and my Mom told me yesterday to start preparing myself that he might not make it through this crisis. Needless to say, I have been struggling a lot and am really hurting. I am using all of that emotion to rally people I know to help support the legislation that will go before Congress this fall. If you have not heard about it, please go to aamds.org to learn more about it. We family members need to honor those we love who have been battling this disease with courage by working hard at getting this legislation passed. That is how I am dealing with this whole thing. Just wanted to tell you what the wounds were, God forbid your Dad experiences something similar, you don't have to waste the time we did with so many doctors who did not know what it was. If we had someone to figure this all out much sooner who knows where we might be today.
Feel my hug from across the miles.
Donna E

[txgirl]

Hello Donna, Steve, cjfaust and everyone reading this,

Hadn't been on in a while and felt led to check in! Here's my update: My dear sweet Dad has come to the point where the transfusions are no longer increasing counts, congestive heart failure symptoms are increasing and he feels it is time to stop transfusions. We have spent much time together discussing, crying, hugging, holding his hand, and sharing all of our thoughts and feelings about each other over and everything else these last few days. While this time is certainly the hardest thing I have ever done, it will be one I will always treasure and I'm trying to look at it as a gift - how often to we get to say everything we would like to say to those we love before they pass? My dad told me he has no regrets! What an inspiration! He even walked out to get the newspaper this morning and is blessed to have no pain at this point. You are all in my thoughts, Donna, I'm sending prayers and love out to you and your dad too. I feel your pain and will join your quest to make a difference.