My dad just diagnosed with MDS. Please read..

[stayinghopeful]

My father was diagnosed with MDS 2 days ago. It was sudden and we were not expecting this kind of outcome. His blood tests back in Nov of 2010 was normal. When he did a blood test this past week, his RBC and platelet were quiet low.

White blood cells- 8.8
RBC- 1.92
hemoglobin- 6.9
MCV- 105
platelet- 85

We took him to the hospital where they gave him 2 units of blood transfusion and after a bone marrow biopsy, the doctors concluded it was MDS.

He is scheduled to start chemo this coming wed at a low dosage. He is 57 years old.

The doctos explained that MDS doesnt have stages, so based on his levels before any blood transfusion (see above), is his condition bad? I mean, his blood count was normal back in Nov.

I am very scared and terrified. I have a few questions and if you guys can answer any of them, i'd appreciate it.

1) is a stem cell transplant considered a "cure" for mds?

2) How hard is it to find a match for the transplant. My father has 3 sibilings? What is the likelyhood of them being matches? Can his children and wife also be potential matches?

3) Is MDS only located in the bone marrow? Or is it a blood disease that affects the entire body? For instance, can the cancer spread and affect other organs in his body?

4) how long is the life expectancy for someone with MDS with and without stem cell transplant? If we do not find a donor, can my father live a good and long life with the help of drugs and medications?

Any information will TRUELY be appreciated. I can't stop crying but I know I have to stay strong for him...

[Al's Wife]

Stayinghopeful,

I know you are scared and all of us can certainly remember when we or our loved ones got diagnosed with MDS. But take a deep breath and hang in there. Some of the stuff you read online is very frightening and not accurate. But this Board is great and members have good advice. They have helped pull me out of the pits many times.
My advice would be to get with a good MDS doctor and don't be afraid to get a second or third opinion.
There are others on this Board far more qualified than I that can answer your questions.
Good luck and God bless you and your family. We're all in this together. It's a rollercoaster ride, for sure, but keep the faith.

Linda

[Neil Cuadra]

Originally Posted by stayinghopeful

1) is a stem cell transplant considered a "cure" for mds?

Yes a successful transplant is considered a cure. Survival rates aren't 100% and transplants can cause their own side effects, but a transplant can eliminate the faulty marrow cells that cause MDS.

2) How hard is it to find a match for the transplant. My father has 3 sibilings? What is the likelyhood of them being matches? Can his children and wife also be potential matches?

His wife is very unlikely to be a match. Genetically they are probably like strangers. That doesn't rule it out, but they may not even test a spouse as a potential match.

Children are always at least half-matches but are fairly unlikely to be full matches since they half-match their mother.

Siblings are the best candidates. With three siblings the chances are about 60% that at least one of them will be a match.

3) Is MDS only located in the bone marrow? Or is it a blood disease that affects the entire body? For instance, can the cancer spread and affect other organs in his body?

MDS is a disease of cells in the bone marrow. To put it simply, bad cells in the marrow fail to produce healthy and plentiful cells in the circulating blood. Side effects can affect other parts of the body, but the primary risks come directly from low blood counts. For example, a low white count makes a patient susceptible to infection.

4) how long is the life expectancy for someone with MDS with and without stem cell transplant? If we do not find a donor, can my father live a good and long life with the help of drugs and medications?

It's extremely hard to say. Every case is different, and statistics based on groups of patients with treatment in prior years are very often not applicable to a new patient. MDS is a really group of related diseases so you can't even group all MDS patients together to make predictions.

The short answer is that your father could live for years with a stem cell transplant and he could live for years without one. He could improve, he could become stable, or his condition could worsen. The blood counts you noted give a snapshot but you need to observe how they change over time.

Please know that many have walked this path, my family among them, and survived to enjoy their lives. Diagnosis is a huge shock but there are treatments to consider, ways to cope and help yourself, and people who are willing to help and support you.

[Greg H]

Originally Posted by stayinghopeful

The doctos explained that MDS doesnt have stages, so based on his levels before any blood transfusion (see above), is his condition bad? I mean, his blood count was normal back in Nov.

Hey Stayinghopeful!

I'm a 54 year-old guy with MDS. It is a bit of a shock to be diagnosed, but your Dad definitely has a variety of treatment options. And he has you to get on the internet and participate on forums like this, which are full of knowledgeable folks who've been down the same road.

MDS doesn't have "stages," but there are "scoring systems," and it's really important to figure out your Dad's score, because that has implications for what kind of treatments might be best now and in the future. Your Dad's hematologist will likely have already calculated something called his "IPSS score," which is based on the number of low counts, the percentage of immature white blood cells in his marrow (called "blasts"), and the number and kinds of chromosomal abnormalities in his marrow. It's useful to know that number.

Is your Dad seeing an MDS specialist?

Do you know the name of the drug that your Dad will be treated with?

Take care!

Greg

[stayinghopeful]

Thank you all for the reply. I truly do appreciate it. I'm doing a bit better. It is still very hard to accept.

My dad goes in tomorrow for his first session of chemo. We are meeting with his hematologist beforehand. We don't know much of anything besides the fact that he has MDS. We were caught so off guard that we really didn't know what to ask when he was first diagnosed. Hopefully tomorrow the doctor will talk more about the severity of his MDS and his subtype. I'll definitely be posting tomorrow night once we get some more information. We don't even have a copy of his BMB report!

My dad is being seen at Stanford in California. Does anyone know of any exceptional MDS specialists in California?

Thanks again

[Hopeful]

Jason Gotlib and Peter Greenberg at Stanford are exceptional MDS specialists

[stayinghopeful]

Today we went for my dad's first session of chemo. We met with his doctor beforehand and got a few of our questions answered. They are still waiting for the cytogenetics test, which he said will take about 2 more weeks. He explained that we will not know the severity of his MDS until we get those results back.

My dad got his first ever session of chemo. He is taking Vidaza 7 times a week. They injected 3 shots (a total of 6 mL) into his stomach today. He feels fine. I'm not sure if the chemo will worsen his condition or not. The doctor warned us that his counts may drop while he is on treatment. Thus, he asked for weekly blood test just to monitor his condition.

Before we met with the doctor today, we got a blood test. His stats are as follow:
-WBC-5.8
-RBC 3.3
-Hb-10.0
-platelet- 68

His cell counts, the doctor explained, are good for now. He had gotten a total of 4 blood unit last week (2 on Tues and 2 on Thurs).

The only thing I'm scared about now is that his WBC have slightly decreased from what they were. On 8/29, they were 8.7. This was the day before we rushed him to the ER because of the low RBC count. I'm worried that the cancer in his bone marrow is staring to show its affects of the WBC, too..

Lastly, I asked for a copy of his BMB report today. It is quite confusing reading it because there are so many different blast percentages and I don't really know what to look at. Hopefully someone could help me out. In the report, it says:

-peripheral blood has 11% circulating blasts
-bone marrow, aspirate and core biopsy- 19% blasts and excess blasts-2
-bone marrow aspirate, flow cytometric immunophenotyping- 15.4% CD32- positive blasts

The report also says that he falls into the refractory anemia with excess blast-2 and the diagnosis was MDS with possible AML.

Doctor also briefly spoke to us about transplant. He said that the siblings will be tested first and if there is no match, they will look within the database. if still no match, he said we should visit a hospital that work with cord blood. What are your thoughts about that?

I know and understand none of this is good news. I'm so worried and can not stop crying. I think about this all day and night.

PLease help me out. I don't know what other news I can possibly take ;(

[Neil Cuadra]

Originally Posted by stayinghopeful

Doctor also briefly spoke to us about transplant. He said that the siblings will be tested first and if there is no match, they will look within the database. if still no match, he said we should visit a hospital that work with cord blood. What are your thoughts about that?

Stayinghopeful,

That's the right plan: siblings first (will you have the results soon?), database search for a match next, with cord blood as a backup plan. Cord blood units don't have as many cells as collection from an adult donor would produce, but they now know how to use multiple cord blood units for a transplant.

The MDS RAEB-2 classification makes sense too, since your father is under 20% blasts.

I'm glad your father feels OK at the moment. Even with the expert care he's getting I know this is very hard for you and your family. Your user name is your mission: staying hopeful as you wait for new information.

[stayinghopeful]

The doctor has not yet given us any information about testing his siblings. I think he is waiting for his test results to come back. Im not really sure how the whole process goes or else I would ask them to go get test right now. He has three siblings and all live within the same town we live in, but it is about 2 hrs away from where my dad is being treated.

I understand that when the blasts are >20%, it is considered Leukemia, is that correct? Now that he has started chemo, what is the likelihood he will cross that fine mine between MDS and Leukemia? Is the process of the transplant the same for the 2 conditions?

I'm so sorry about all these questions. I lose my mind and can not think properly when we speak with his doctor because I am so stressed out. I beat myself up afterwards because I only then start thinking of questions to ask...when will this ever get easier?

[stayinghopeful]

Also, do they look at the blasts in the bone marrow or in the peripheral blood to determine MDS and Leukemia. And how does AML fit in with all this?

[Neil Cuadra]

Originally Posted by stayinghopeful

The doctor has not yet given us any information about testing his siblings. I think he is waiting for his test results to come back. Im not really sure how the whole process goes or else I would ask them to go get test right now. He has three siblings and all live within the same town we live in, but it is about 2 hrs away from where my dad is being treated.

I suggest that you write down questions as you think of them and bring the list to your appointment. That way you won't forget them when you talk to the doctor. One question is if there's any reason to wait to test his siblings. And it might be worth asking if there's a way to ask followup questions in between appointments, by email or phone or by talking to an assistant.

I understand that when the blasts are >20%, it is considered Leukemia, is that correct? Now that he has started chemo, what is the likelihood he will cross that fine mine between MDS and Leukemia? Is the process of the transplant the same for the 2 conditions?

Yes, that's correct. I don't know what the chances are of his diagnosis changing, but determining the best treatment approach is what matters, not exactly where they draw the line for categorization. The transplant procedure is likely the same, although there may be differences in the preparatory regimen depending on his condition at the time it begins.

I'm so sorry about all these questions. I lose my mind and can not think properly when we speak with his doctor because I am so stressed out. I beat myself up afterwards because I only then start thinking of questions to ask...when will this ever get easier?

Asking questions is one of the purposes of this website. Even though we aren't doctors, we share the worries that you describe. It does get easier, though never pleasant. A few of your questions are the most important, and once those are answered I hope you'll feel more in control. A tip we learned: If another family member or a close friend can come along, one of you can ask questions and the other can take notes.

Originally Posted by stayinghopeful

Also, do they look at the blasts in the bone marrow or in the peripheral blood to determine MDS and Leukemia. And how does AML fit in with all this?

They look at both, but both MDS RAEB2 and AML are characterized by higher than normal blast cells in the circulating blood. A patient's condition doesn't really change if their bone marrow blasts go from 19% to 20% or back again, but doctors need to put patients in classification groups for statistical purposes. Sometimes it even matters for insurance. But finding the right treatment is the real goal.

[cathybee1]

I suspect that things have moved so fast in getting your dad treatment that it feels very overwhelming.

It is awesome that they are starting treatment so quickly. For many of us, we have to wait much longer to get treatment started.

Vidaza is a frontline medication for treatment of this disease. Doctors suggested it for my husband. It doesn't mean that the doctors think your dad's MDS is progressing to AML. And Stanford has been recognized by the MDS foundation as a Center of Excellence. So, your dad is in very good hands.

It is a very overwhelming experience to find out a loved one has been diagnosed with a disease that most people have never heard of. It's normal to react emotionally. That being said, you do have time to become more knowledgable about the disease and treatment options available for your dad. One suggestion I would make is to write some of your questions down before you meet with the doctors. There's a lot of information to process right now and I find that writing my husband's and my questions down ahead of time helps make sure neither we don't forget to ask something important.

One thing I learned from these forums is not to worry too much about the daily fluctuations in blood counts. That's easier said that done, I know. Your dad's blood counts will go up and down -- that happens to all of us, we're just not so aware of it as when we're getting blood draws every day. Some changes in the counts are also expected after starting Vidaza. A number of people in the forums have gone through many different kinds of treatments and will be able to tell you better what to expect once the doctors narrow the choices down for your dad.

Hang in there, you will feel a little less crazy as you learn the jargon and what to expect.

[Al's Wife]

Stayinghopeful,

MDS is a rollercoaster ride and you have to just hold on and hang in there. When my husband was first diagnosed I felt exactly like you're feeling (and to be honest, even now I still have those days) BUT having said that, you are doing the right thing by trying to learn as much as you can about this disease.
Neil and Cathy gave you the best advice when they said to write down your questions before each visit. That's what I do, and I go down the list one by one until they are all answered. Our doctor stopped in front of me yesterday and said, Okay, what questions have you got today. Then he stood there until they were all answered.
You also have to be your Dad's advocate. Even though you are at Center of Excellence for MDS, there is nothing wrong with getting a second opinion or even a third opinion.
My husband did not respond to Vidaza and he is now in his second clinical trial (first one didn't work) and we're hoping this one will at least slow down the progression. We almost ended up in Houston for this clinical trial when it was being offered at our hospital locally and if I hadn't done my own research we would be in a hotel in Houston instead of sitting in our own home today.
So don't be afraid to ask questions (even the hard ones), and stay strong and hopeful. There are so many new drugs being tried and looking very positive.
Good luck and I sure hope your Dad responds to Vidaza.
Linda

[bebop]

When my Dad was diagnosed I came home from the dr with him and started researching and found this site. I got some really good support as well as alot of questions answered. It is a roller coaster ride for sure. My suggestion as others have said is write down your questions for the dr. Don't be afraid to ask anything. I cried for a year after Dad got his dx. Never in front of him but every time I left him. It is ok to cry and I too thought about it every second of every day. Hoping I could do anything to make him better. Feel free to pm me if you just need a shoulder. Dad was 80 when he was dx'd.

[stayinghopeful]

Thank you all for your support. I look forward to checking this website everyday when I come back from the hospital. You all give me the hope I need to be strong. Thanks and God bless you all. I'll keep on writing on here when we get more news about his condition.

[stayinghopeful]

I have been doing some reading and I was wondering what the difference between stem cell transplant and bone marrow transplant is? Can they both be used to cure MDS? Is finding a match based on the same markers?

Also, will doctors do a special private test for my dads sibilings and children or does everyone have to register as a donor through the website beforehand?

Thanks again for all the help you guys have provided me throughout this crazy week.

[Neil Cuadra]

Originally Posted by stayinghopeful

I have been doing some reading and I was wondering what the difference between stem cell transplant and bone marrow transplant is?

The method for collecting the cells is different. Harvesting bone marrow requires the donor to have general anesthesia. In contrast, stem cells are collected from circulating blood (for the donor it's like donating blood), but a drug (filgrastim, brand name Neupogen) is usually given to the donor ahead of time to cause more stem cells to enter the circulating blood.

Can they both be used to cure MDS?

Yes, the patient experience is the same for a bone marrow transplant or a stem cell transplant. The choice between them may depend on the donor's preference and the protocols of the transplant center.

Is finding a match based on the same markers?

Yes.

Also, will doctors do a special private test for my dads sibilings and children or does everyone have to register as a donor through the website beforehand?

It's private. They don't have to join the bone marrow registry to be tested as possible matches for your father.

[stayinghopeful]

Almost done with my dad's first chemo session. He's doing alright right now. Hasn't been feeling ill from the medicine. His blood counts are slowly going down, probably from the chemo. Doctors might give him a blood transfusion on Wed.

Still waiting on his cytogenetics test results. I have been doing some reading and wanted to ask a few questions.
--Do bad genetics cause MDS? I have read that people with MDS sometimes have an extra 18 chromosome or a delation in part of chromosome 5. Does having one of these cause MDS? Like for instance, do all trisomy 18 individuals eventually acquire bone marrow cancer? Are there other common chromosome abnormalities that can lead to it? Also, are these inherited? If by dad has abnormalities in his chromosomes (18, 5), can it be passed down to his kids?

Thanks

[DanL]

That is a fantastic question.

The cause of MDS is still classified as unknown, unless the patient has had prior exposure to alkalyting chemotherapy, or substantial exposure to certain chemicals like benzen. I believe that current opinion is that you develop the cytogenetic anomaly as a result of the MDS, not the other way around. In other words the extra copy of a chromosome 8 like I have, or a deletion 5q are symptomatic of the disease, not the cause. There are about 10 different regularly occurring chromosomal changes that are found in MDS, but about 50% of MDS patients have normal cytogenetics. It is common for patients to develop more abnormalities as the disease progresses, though many do not.

One of my big concerns when I found out that i had MDS is whether or not my children would be susceptible to getting the disease. Current belief is that MDS is not inherited or passed on along the family line. There are some rare cases where it happens, but these may be related to environmental factors over family genetics.

As you will find out, although many different patient types are named MDS, it acts like a very different disease for many different people. The main theme is that the patients have dysplastic (abnormal) blood cell development in at least one blood line, and usually present with at least one blood line that is either not producing enough, or not maturing adequately and eventually results in a transfusion need.

Dan

[Duume]

Repeating: My wife is now a 12 year MDS person. 2 years of not knowing what was wrong and ten years on Pro Crit. If Pro Crit works for you, you can give him his shots at home yourself, saving a lot of drive time, waiting room time and the other PITA's involved. My wife is now 77.

[stayinghopeful]

So, things have been moving quite slowly for my dad. We have been waiting for what seems forever for the results of his citogenetics test. We have a meeting with his hematologist this Wed, where he will further explain to us where my dad stands in terms of his illness. He is scheduled to start his second round of chemo that Wed as well (vidaza). We also have an apt with a bone marrow specialist on thursday. I'm not really sure what to except on Thursday, but I guess we will just have to wait and see..

My dad has been doing well overall. Within the past month, he has gotten 2 units of blood, which I suppose isnt too bad because it is expected that his counts will go down with the chemo. Just hoping that he can stay strong and healthy throughout the subsequent sessions of chemo. I will post on Wed when we get some results back.

Thank you all for all that you do. I have been reading more and more on this site and some of the people here are truly inspirational. God bless you all.

[melger]

Hello! When listening to your story, my eyes welled up in tears. It was only in April 2010 that we found out that our beautiful mother had MDS and we were all in a state of disbelief. So young (65), so full of life. I think that I cried myself to sleep every night for months, even still sometimes.

In the beginning the information is too much to handle, but gradually as time has gone by I feel as if I'm an expert. Truthfully, I have become a bit of a control freak with the situation. I go to every Dr.'s appt and vidaza session. I ask questions until I am blue in the face and they are always answered. You MUST become your father's advocate.

My mom is about 7 years older than your father, and her first Dr.'s didn't even mentions stem cells or bone marrow transplants. We finally got her to see Dr. Stone at Dana Farber in Boston and he has been amazing. He has the "never give up" approach. "If this doesn't work, than something else will. Technology and science are improving every day," he says.

My mom also has 3 siblings but sadly none of them were a match. However, through the registry, she has 2 perfect matches should she need a transplant. I just wanted you to know that we are all here for you at any time. Don't ever hesitate to ask what ever you need.

BTW, mom has been holding strong on Vidaza for 14 months and her counts are good. It did take 6 months for it to start working though. She lives life as she did before she found out! Believe me it has not slowed her down...Good luck to you and your family and keep your chin up!

-Melanie

[stayinghopeful]

Hi Melanie.

Thank you for all your kind words and support.
I am so glad to hear that you have found a exceptional doctor and that your mother is doing well with the Vidaza.
My dad finished his 2nd cycle today. Hopefully this will be the chemo that works for him as well. We had a tough week. Spoke to a bone marrow specialist and he gave us nothing but bad news. It was hard on my dad and the rest of the family as well, but we are all staying strong for him.

So happy that your mom found 2 matches! I could only imagine what an amazing feeling that would be. My father's siblings will be tested sometime next week. I'm praying that one will match.

I, just like you, have gone to every doctor visit and chemo session. I feel like I don't want to miss any bit of information the doctors or nurses may give. It's a crazy roller coaster ride, but I am on it with my dad until we safely reach the finish line and can jump off the ride.

Stay strong and faithful. All things are possible with God. Let me know how things are going with your mother. God bless you, your mother and family

[melger]

Hi!
Do not let them paint a bleak picture for you. Find a Dr. that will give you hope. Yes, while a bone marrow transplant may not be in the picture, there are many other treatments for patients with MDS.

We were also told that a bone marrow transplant was not an option for mom, however a mini stem cell transplant was/is. And while it carries other risks, it was definitely an option that we could pursue. I specifically had to ask my mom's local oncologist to test her siblings "right away", because I wanted the piece of mind in knowing if she had a match. He asked "what for, she isn't a candidate for a marrow transplant," but I knew that there were "other" options out there.

When we met with Dr. Stone he was very positive about the mini stem cell transplant if she ever needed one. Right away he had her meet with the transplant team so that we could be educated about our options. IT was there that they searched the registry and found the matches.

Like I said, you are going to have to be your father's advocate. There are clinical trials going on every day, new drug regimens, etc.

If the Vidaza doesn't work, something else might! I'm not an expert, but the thought of losing my mother is unbearable and I will turn over every stone to find the answers that I need.

Keep positive and more importantly keep your dad positive. It is really so important. Everyone here on this board has been touched by this disease in one way or another. I remember scouring these boards in the beginning for help, but it wasn't until you posted that I found my voice here.
If you need ANYTHING let me know!
-Melanie

[stayinghopeful]

Today was a day of good news. We met with my dad's hematologist today and my father also started his 3rd round of chemo (vidaza). Ever since the end of his 2nd round of chemo, his count have been going up. He hasn't gotten a transfusion in 4 weeks!

White blood cells
10/19- 2.0
10/26- 2.7
11/2- 3.0

Hb
10/19- 8.5
10/26-8.8
11/2-9.7

Platelets
10/19- 51
10/26- 98
11/2- 258 (in the normal range!)

Doctor said that this is all good news, but we will not know the actual affects of the chemo until they perform another bone marrow biopsy. We are staying hopeful though!

Also, my dad's 3 siblings were tested as possible matches about 2 1/2 weeks ago. His hematologist said that the results are not fully back yet, but from what he has heard from the BMT specialist, two of the three siblings seem to be very promising matches!! Can't wait to get the call from his bone marrow transplant nurse!!