Myelodysplasia RAEB-2 refractory anema with excess blasts -2

[rondeb111]

Dad just diagnosed with Myelodysplasia RAEB-2 Refractgory Anemia with Excess Blasts-2. 65 years old. Any information regarding; treatement life expectancy, what to expect from disease...etc. Had C-cell Lymphoia 18 years ago and prostate cancer 10 years ago.

Update from dr. visit today...
2/7/11
Saw Dr. Amanda Cashen at Siteman Cancer Center, there are a total of 7 transplant Drs in the group, they openly discuss the cases with all members on the team – bld work done, counts up from last Fri, had Neupogen shots on Fri & Mon,
2/7 2/4
WBC – 4.6 3.3 white blood cells
PLT- 226 226 platelets

As we all know he has MDS or Myelodysplasia, with his case, he has issues with his wbc’s dropping & moderate anemia, should the anemia get worse he might need transfusions, should the percent of blast cells increase, it can go into Acute Leukemia. Right now he is at 18%, they say it is Leukemia at 20%; he is at high risk for this to happen, if it were to, he would get admitted to the hospital for what they call induction chemo to get the Leukemia in remission until we could do the Stem cell transplant.
She says if we do nothing he has 10 – 12 months, Chemo only, 2-5 years, Stem Cell transplant probable cure, providing no complications, so he has decided to go for the transplant, actually he has turned it all over to God, & the outcome is in his hands, so he will be with us as long as God determines.
Right now, we start chemotherapy on Monday, I failed to get the exact spelling of the drug he will be getting so will have to give you that at later time, the dr called this chemo a bridge until we get the transplant. It is going to be outpatient, Monday – Friday; the treatments will be IV & last about an hour, blood work every Monday. He will be able to do 4 of the 5 days at West County to save some of his time. This chemo is unlike the last go around & he should not be near as sick, that & they have a lot of new drugs to help with any side effects he might have!! He will have a treatment every 4 wks, at least 3 – 4 before the transplant.
Transplant – the best choice is a sibling, the boys are only 50% possible match, so they will try first siblings then donor registry. It will be about 4 wks after sibling checked before we know if we have any matches, they want a 10/10, but will transplant an 8 or 9/10, if have to. When he goes in for transplant, he can have someone stay with him 24/7 the whole time he is there if he wants. He will be in hospital at least 4 wks, the 1st wk they give him chemo, the next week the donor will donate stem cells & he gets them on same day, if out of state, they fly the stem cells in, it will take him about 3 wks to build himself back up enough to go home. He will be on immunosuppressant drugs for a year, possibly forever. After the transplant they will do a bone marrow biopsy to see that he has donor & his own @ 30 days & again @ 100 days, the goal is for the donor cells to eventually be dominate, it will take about 4 months before he feels real good. The actual donation is taken from the blood, not from the bone marrow, it makes it much easier on the donor, & that is also how they test them, it’s all thru the blood, my how things have changed in 16 years.

[launch]

rondeb111,
Just realize that the IPSS score charts were established BEFORE there were so many effective treatments available. Is your father transfusion dependent? How often? Is he only low on Red Blood Cells (RBCs) or does it include White Blood Cells (WBCs) and Platelets (PLT) ???

[Neil Cuadra]

rondeb111,

What kind of treatment did your Dad get for lymphoia and prostate cancer?

[rondeb111]

Originally Posted by launch

rondeb111,
Just realize that the IPSS score charts were established BEFORE there were so many effective treatments available. Is your father transfusion dependent? How often? Is he only low on Red Blood Cells (RBCs) or does it include White Blood Cells (WBCs) and Platelets (PLT) ???

I believe only white cells. Just diagnosed on Friday.. have two appointments next week. Another report came back with chromosones are off .. not good they said?

[rondeb111]

Had chemo for Lymphoma and radiation for prostate. Also has diabetes, heart disease, neuropathy in legs, had one toe removed due to infection and just recently had knee replacement. Also has mrsa staff infection that comes and goes.

[Neil Cuadra]

rondeb111,

Your Dad is a real survivor! I'm sorry to hear he's gone through so much.

What should you expect? First off, some predictable symptoms if his blood counts are low. Ask for his "CBC" (complete blood count) report to see what the numbers tell you; they should indicate which counts are low or in the normal range. If he has a low white count you'll want to take any precautions you can against the infections he's prone to, and react quickly when they occur.

Chromosome problems are part of the nature of MDS. The specific chromosomal abnormalities can be interpreted as relatively better or worse but at this stage the most important result is that they probably confirm the diagnosis.

MDS is not a disease that can be dealt with easily or that will have much chance of disappearing if untreated, although some patients are able to live with lower-than-normal blood counts if they aren't critically low.

Even expert doctors have trouble predicting life expectancy for a patient with a bone marrow failure disease. They can tell you statistics about groups of patients in years past, which tend to be skewed toward the pessimistic side. With your Dad's complicated history, I doubt that the patients and caregivers in these forums can make predictions that could help you.

I can tell you some of the factors that aren't in his favor:

• Among the MDS subtypes, RAEB-2 is on the most serious end of the scale.
• MDS that results from previous cancer treatments, which may be the case here, is more likely to progress and harder to treat than MDS not associates with previous cancer.
• Your Dad's other health problems may prevent him from being able to tolerate aggressive treatment.

I can also tell you what your Dad has going for him:

• The availability of excellent physicians with MDS experience, if you seek them out. For example, the Siteman Cancer Center in St. Louis is known to be excellent.
• The improvements that are constantly being made in understanding and treating MDS.
• The availability of clinical trials that gives patients access to cutting edge treatments at little or no cost.
• You! I can't say enough about how important it is to have the support of a family member who is seeking out information and helping decide what to do. Having you on his team, along with his doctors, is a huge plus.

You can learn more about the basics of MDS, including treatment choices, by reading the information about MDS here at Marrowforums, by getting the information packet from the Aplastic Anemia & MDS International Foundation, and by reading about MDS at other websites. It would be very helpful for you to go to your Dad's doctor's appointments with him, if you can, since you'll be able to ask questions directly and get advice that's specific to your Dad's situation.

[forevr30]

Originally Posted by rondeb111

Dad just diagnosed with Myelodysplasia RAEB-2 Refractgory Anemia with Excess Blasts-2. 65 years old. Any information regarding; treatement life expectancy, what to expect from disease...etc. Had C-cell Lymphoia 18 years ago and prostate cancer 10 years ago.

Hi there! My husband was diagnosed with MDS/ RAEB-2 last year. He is 61 years old. He underwent 5 days of chemo, followed by total body irradiation, and then a stem cell transplant from a related donor (his brother) in October 2010, and is doing great! Prior to his diagnosis of RAEB-2, he was not sick with anything. They found a problem with his blood counts when he had to have a minor surgery last February. He was never on transfusions or had any prior treatment for this disease. We went right from diagnosis to transplant in just a few short months. Hang in there. One of the big symptoms of this disease is the tiredness. It is awful to have no energy to do anything. It is amazing the things they can do now. If I can help in any way or answer questions for you, let me know.

[Flamingo Jim]

I was diagnosed last year with RAEB-1 and treated at Siteman Center in St Louis with a Stem Cell Transplant on September 30, 2010. For the most part, the treatment has gone well to the point where I am going back to work Feb 1. Look thru my blog to see the kinds of things I went thru: http://jimschmitz.wordpress.com/

Keep Strong and Good Luck!

[vikas]

Originally Posted by forevr30

Hi there! My husband was diagnosed with MDS/ RAEB-2 last year. He is 61 years old. He underwent 5 days of chemo, followed by total body irradiation, and then a stem cell transplant from a related donor (his brother) in October 2010, and is doing great! Prior to his diagnosis of RAEB-2, he was not sick with anything. They found a problem with his blood counts when he had to have a minor surgery last February. He was never on transfusions or had any prior treatment for this disease. We went right from diagnosis to transplant in just a few short months. Hang in there. One of the big symptoms of this disease is the tiredness. It is awful to have no energy to do anything. It is amazing the things they can do now. If I can help in any way or answer questions for you, let me know.

which dr /institute/hospital u got stem cell transplant .....done my dad is also having raeb 1 and is having transfusions every 15 days.....

[rondeb111]

Just an update on my dad’s condition. He had his first treatment of Dacogen 4 weeks ago. Things went well for the most part, no nausea, just weakness. His sister was not a match but did find 4 possible matches on donor list. One week ago he started with sore throat and doctor put him in hospital for IV antibiotics. Two days later he started with fever, has had two blood transfusions and still has unexplained fever. Doctor wants him to do two additional rounds of Dacogen before transplant. Any words of wisdom or advice are appreciated.