MDS Starting Vidaza: What to expect?

[edo288]

I was diagnosed with MDS - RCMD about a year ago. My GP started me on Procrit five months ago. I have had two transfusions in the past two months. Now, my Oncologist is starting a Vidaza 6-cycle treatment course in one week (5 days of injection/28 day cycle). It has just been made clear to me that MDS is cancer and will translate to AML. Currently, I feel great and suffer no apparent symptoms.

Here are some stats that will (perhaps) help you answer my questions at the end of this message:

Male age 70 diagnosed with Leukopenia and Microcytic Anemia with Multilineage Dysplacia. Cellularity is 70-80%. Blasts less than 5%. Cytogenetics demonstrated an interstitial deletion of the long arm of chromosome 9 which is in two copies. Hemoglobin maintaining above 10g/dL without additional transfusions. Absolute Neutrophil Count above 1,800/ul and Platelet count of 288,000/ul.

My Oncologist says that I am an intermediate risk and the Vidaza treatment course could extend my quality of life by 6 months to a year. He prognoses translation to AML in about 2 years with 6-9 months to live after translation (don't you hate it when they sugar-coat their prognosis).

Now, to my questions: To the extent possible, I want to spend whatever quality time I have traveling and having fun with my wife. How long between Vidaza cycles will I feel normal and feel like traveling? When and how will they know that Vidaza treatment are working? What typical tests will they perform to determine the treatment effectiveness?

Thanks in advance for your responses.

[Birgitta-A]

Hi edo288,
When I was dx May 2006 my situation was similar to yours - I was 67 yo and had (and still have) RCMD. Your counts are much better than mine because I was transfusion dependent from start (have now received 100 units of packed red blood cells), my WBC:s were low but normal and my platelets 65 (now about 40). My EPO was more than 800 so I was never treated with Procrit because this type of drug have best effect if EPO is low (less than 500).

Your chromosome aberration – as far as I understand isolated Chromosome 9 aberration – has an intermediate prognosis. http://atlasgeneticsoncology.org/Ano...ri9ID1020.html

Your doctor doesn’t know if and much less when you can get AML.

My professor – Eva Hellström-Lindberg – has told MDS patients at a MDS Foundation Patient Forum that the prognosis today is much better because we can get Procrit and similar drugs for low HGB, Neupogen and similar drugs for low WBC:s, iron chelation if we have iron overload after many transfusions and many drugs like Vidaza.

Many patients like me prefer supportive therapy and want to wait with drugs like Vidaza but I think it is quite OK to try the drug. Hopefully you belong to the 50-60% that will respond to the drug.

Nobody can tell you if you will get any adverse reactions and for how many days if you get them. You should always try Vidaza for at least 4 cycles. They can still only do the same blood work as they do now but many researchers try to find tests that really can show if the drug is working very early. In the thread before your post I posted info about such a test. Azacitidine is the same drug as Vidaza.
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Hope Vidaza will give a good result !
Kind regards
Birgitta-A
Asymptomatic 42 months after Interm-1 dx

[edo288]

Your response is very encouraging. Thanks.

Your cytogenetic reference was for "Chromosome 9+" while my tests show del(9q). Do you know the significance of the difference?

I am very curious as to why you opted for Supportive Treatment only rather than a demethylating agent? Are you aware of some higher risk factor or some irreversable damage from Vidaza that I am not aware of? Perhaps I am getting too personal -- I have no idea of the cost of Vidaza treatments.

My oncologist says that Vidaza can postpone the translation to AML for from 6 months to one year. However, I am somewhat skeptical of his advice because he is very young and just taking his medical board exams. Since I am receiving treatment from the VA, I don't get to choose my doctor.

Regards,

Ed

[tytd]

Hello,
I am not an oncologist but from what I have read it is not an absolute certainty that your MDS will progress to AML. However you do have a higher risk of that since you do have a chromosomal abnormality but the risk is not 100% ( possibly you have a more than 50% risk). More MDS patients die from the consequences of bone marrow failure than from AML. IF you are a candidate for therapy , I think that Vidaza is now preferred over Dacogen just due to the study showing it does improve survival in high risk patients. However you are apparently in the intermediate IPSS category. So should you take Vidaza now or wait until the Procrit stops working or your disease progresses?? I would definitely ask for a referral to a tertiary care center or MDS Center of Excellence oncologist especially if your VA oncologist is young and has not had a lot of experience with MDS patients. You could still be treated at VA but just feel better about getting an opinion from an expert in MDS. Many patients have 2 oncologists, the one at home and the "MDS specialist" who can confer together about your best care. I wish you the best of luck. tytd

[Birgitta-A]

Hi edo288,
In this article you will find chromosome 9q- in table 2 - the prognosis is supposed to be favorable.
http://www.pubmedcentral.nih.gov/art...?artid=2413090

I prefer supportive therapy only because I am very afraid of adverse reactions - I told my doctor at dx that I think quality of life is much more important than living longer but feeling ill. My doctor is a specialist in MDS and treatment with Vidaza. I have never heard or read anything about higher risk factors or some irreversable damage in connection with Vidaza.

You know I live in Sweden where we pay the highest taxes in the world and all types of examinations, treatments and hospital care cost almost nothing. I take 2 Neupogen injections/week for my low WBC:s - they cost 100$ per injection and Exjade 1000 mg/day that costs 55$ per day.

As tytd already told you it is not true that 100% of the MDS patients get AML. The most common death cause in MDS is heart failure (like in the rest of the population). The second cause is infections, then bleedings due to low platelets and then AML. The prognosis depends on many factors - if you don't have any other diseases you have a better prognosis.

You should take care of yourself and try to avoid infections - they will decrease all counts .
Kind regards
Birgitta-A

[ann]

My husband has been taking Vidaza and is starting his fourth round of treatments tomorrow. He is doing very well on them. His first round consisted of 7 days and the last two have been 5 days as will this next one. I don't know how many he will receive but as long as he is doing well, he is ready to take as many as the oncologist recommends. He is 73 years old and has other major medical problems. He receives Procrit shots also, as needed.
His first shot of Procrit made him feel a little "off" (his words) but has had no other bad symptoms from Procrit or Vidaza. He receives the Vidaza through a port that was put in before his first treatment. The port has been a God send to him. He hates to get stuck. We aren't able to do the things we did before his dx but mostly because of his congestive heart failure and pulmonary edema. He got his diabetes under control just in time for all these
other ailments to strike!
Good luck and God bless.
ann

[jerryo]

Hello

IT SOUNDS LIKE WE MAY BE IN THE SAME GENERAL BOAT.

I WAS DIAGNOSED WITH MDS (SUB GROUP RAEB 1) ABOUT A MONTH AGO. SINCE THEN I HAVE BEEN TRYING TO LEARN ALL I CAN ABOUT THE DISEASE. WE ATTENDED A ONE-DAY CONFERENCE AT UCLA IN SOUTHER CALIFORNIA SPONSORED BY MDS INTERNATIONAL FOUNDATION. IT WAS VERY INFORMATIVE AND IT WAS WELL WORTH THE TRIP.

I HAVE SINCE HAD A SECOND OPINION AT STANFORD UNIVERSITY AND THEY CONCURRED WITH MY LOCAL ONCOLOGIST ON ALL FRONTS. VERY REASSURING. NOW I HAVE TWO ONCOLOGISTS IN MY CORNER.

HERE ARE A FEW STATS TO PONDER: AGE 73; WHITE CELLS, 2300; RED CELLS 10.4; PLATELETS 71K, BLASTS 8%; CYTOGENETICS, GOOD.

I START MY AZACITDINE (VIDAZA) TREATMENTS ON MONDAY. THIS WILL BE GIVEN IV FOR SEVEN DAYS AND THEN WAIT 28 DAYS BEFORE THE NEXT CYCLE. I WILL HAVE ANOTHER BONE MARROW BIOPSY AT THE END OF THE FORTH CYCLE TO EVALUATE THE PROGRESS.

I AM REALLY THANKFUL FOR THE MDS INTERNATIONAL FOUNDATION AND ALL THE INFORMATIONAL DATA THEY HAVE AVAILABLE FOR US PATIENTS. IT GOT ME STARTED ON MY QUEST FOR INFORMATION AND IT JUST KEEPS ON GIVING. THIS IS MY FIRST TIME USING THIS FORMAT TO EXCHANGE INFORMATION AND IDEAS.

I SHARE SOME OF YOUR CONCERNS REGARDING QUALITY OF LIFE AND BEING ABLE TO TRAVEL AND ENJOY LIVING WHILE RECEIVING AZACITDINE. I WILL LET YOU KNOW HOW WELL I TOLERATE THE TREATMENTS.

[edo288]

Hi Jerry:

You sound like a good soul mate. I start Vidaza Monday also. Mine will be 5 days of subcutaneous injections and a 28 day cycle. Let's keep in close touch and compare side-affects.

Regards,

Ed

[launch]

Ed & Jerry -
Good luck to both of you on your Vidaza treatment. Please look under the clinical trials section (you can search for e1905 ) and you will see my posts for my husbands' Vidaza progress over the past 7 months. He's done tremendously well and is now in remission. He receives injections of Vidaza each month and will continue to do so to keep it in remission. Ron has tolerated Vidaza injections very well! and we are so very thankful!!!!

Cindy

[ann]

Ed and Jerry you will be in our prayers. My husband just finished his 4th round of treatments IV today. He is doing very well. His doctor was really happy with his progress. He will go back Monday for a Procrit shot and Labs
and the next week back for labs. He will be on a program of Vidaza every 3 weeks for 5 days. He receives his chemo through a port that was put in during one of his earlier, many hospital stays. It has been over a month since his last transfusion and his counts have risen. We just pray that he will continue to do well. Keep us informed of your progress. God blessings to all.
ann

[jerryo]

Hello Ed.

It does look like we are on the same track so it will be interesting to follow each other along this phase of life.

It is also good to know others will be following our progress and keeping us in their prayers.

I am new to MarrowForums so I have to learn how to navigate the website.

Talk to you soon.

Jerry

[edo288]

Hey Jerry:

I'm sure your doctor will get a Complete Blood Count before starting treatment. So, if possible, get a copy of your blood lab tests and let's report changes in the critical values:

Red Blood Count (RBC),
White Blood Count (WBC),
Neutrophil Count (NE#),
Neutrophil Percent (NE%),
Serum Hemoglobin (HGB-FAV),
Serum Hematocrit (HCT-FAV) and
Serum Platelet Count (PLT-FAV).

Regards,

Ed

[jerryo]

Good morning Ed.

Yes, I am scheduled for a CBC draw before my first treatment.

I have had three CBC draws in the last month but I have only been tracking WBC, RBC, & PLT-FAV, and of course the blasts when I have a bone marrow biopsy. I will add the other items on your list to my spread sheet so I can keep track of all the items on the CBC.

It is a little strange to me that I am starting to understand some of the medical terms the doctors are using. I don't think I can be over informed.

Have a good day.

Jerry

[edo288]

Good Afternoon Jerry:

I guess I should have added a the normal ranges for blood tests and their significance:

Blood - Units (Range)
WBC - K/cmm (4.8 - 10)
RBC - M/cmm (4.7 - 6.1)
NE# - K/cmm (2.2 - 4.80)
NE% - % (43 - 65)
HGB-FAV - g/dL (14 - 18)
HCT-FAV - % (42 - 52)
PLT-FAV - K/cmm (130 - 400)

As you can see, when you initially referred to your "RED CELLS as 10.4," you were probably referring to your hemoglobin. Hemoglobin is that part of the red blood cell that carries oxygen throughout the body.

Neutrophils are important because they are the white blood cell most indicative of your body's ability to fight infection. The International Prognostic Scoring System (IPSS) follows the Absolute Neutrophil Count (ANC) -- which is derived by multiplying the White Blood Cell (WBC) count by neutrophil percent (NE%). An ANC less than 1,500 (some say 1,800) indicates an inadequate immune system.

Platelets under 100,000 indicate a risk of internal bleeding.

Hope I'm not repeating what you already know. Just thought it might help.

Regards,

Ed

[jerryo]

Hi Ed,

Thanks for the clarification of terms. I was going to ask my doc to clarify the complete data on the CBC report.

I did notice a slight difference in terms used on the report from Stanford.

Good luck today.

Jerry

[Mary in Alabama]

Originally Posted by edo288

Good Afternoon Jerry:

I guess I should have added a the normal ranges for blood tests and their significance:

Blood - Units (Range)
WBC - K/cmm (4.8 - 10)
RBC - M/cmm (4.7 - 6.1)
NE# - K/cmm (2.2 - 4.80)
NE% - % (43 - 65)
HGB-FAV - g/dL (14 - 18)
HCT-FAV - % (42 - 52)
PLT-FAV - K/cmm (130 - 400)

As you can see, when you initially referred to your "RED CELLS as 10.4," you were probably referring to your hemoglobin. Hemoglobin is that part of the red blood cell that carries oxygen throughout the body.

Neutrophils are important because they are the white blood cell most indicative of your body's ability to fight infection. The International Prognostic Scoring System (IPSS) follows the Absolute Neutrophil Count (ANC) -- which is derived by multiplying the White Blood Cell (WBC) count by neutrophil percent (NE%). An ANC less than 1,500 (some say 1,800) indicates an inadequate immune system.

Platelets under 100,000 indicate a risk of internal bleeding.

Hope I'm not repeating what you already know. Just thought it might help.

Regards,

Ed

Thanks Ed for the explantion of the numbers etc. I am new to this website and I am trying to take in as much information as I can. My husband is 88 in a few days and I need to learn all I can before his next appointment. I did get a copy of his bloodwork and have asked for a copy of his biopy report. If anyone has any advice for me, I would greatly appreciate it.
Mary in Alabama

[edo288]

First Cycle, First Day, No Side-Affects!

So, don't believe all of the horror stories you've read.

I plan to chronicle the Vidaza treatment course as I experience it. I'll place it on a special blog and post a URL address soon -- stay tuned.

Thanks for your prayers and good wishes.

Ed

P.S. Jerry, how did your day go?

[jerryo]

Hi Ed

I was very pleased with my first day on Vidaza. I was given an anti-nausea drip prior to the Vidaza and that gave me a slight headache but no nausea.

I am now on antibiodics because my NE#'s have fallen from .04, .03, to .02 yesterday. As a result I am re-doubling my efforts to stay out of crowds and avoiding sick people.

I have copies of all my CBC lab reports and am now tracking all the critical items. Thanks for the info you sent yesterday, it helped square me away on the proper names, etc. My doctor was very helpful in explaining the significance of each of the items. I also went online (MedicineNet.com) and got a complete description of the components of the CBC. I will have to study these reports to fully understand them.

I was very impressed with the staff in the Infusion Center at Sonora Regional Medical Center. They were very professional and took all the time I needed to understand what was going on. This was in view of all the other patients that were in pretty bad shape and they got excellent treatment as well.

I am glad your first Vidaza treatment was positive. Now, let us hope we get the results it was meant to produce.

[edo288]

Love your upbeat report. Now, let's set records for imporvemnt!

Regards,

Ed

[jerryo]

Hello Ed,

The second day of Vidaza was good. I didn't have the slight headache I experienced the first day. Still no nausea. I get an injection of Zofran before each dose of Vidaza. It seems to be working. I also have Zofran in pill form at home in case I need it.


My doc is concerned about my low WBC so prescribed Neulasta. This is a drug I get at the Infusion Center intended to increase my White Blood Count. Not sure how often I will be getting it. So far I got a dose on Monday and the next dose will next Wednesday. The side effects are sore joints and a few other minor things. If it decreases my chances of getting infected, it will be worth it.

My main concern at this point is having to avoid crowds. I want to go to church but we are a "hand shaking" people so I might have to avoid certain meetings for a while. I am a member of the Church of Jesus Christ of Latter-day Saints. I find a lot of comfort in having the Gospel of Jesus Christ in my life.

Have a good day.

Jerry

[Neil Cuadra]

Jerry,

It's appropriate to be cautious about being in crowds but it would be a shame if you were completely isolated from people who support you. If you are OK with taking a break from church attendance, that's safest, but if you do get together with other church members I'm sure they'd understand if you chose to skip the handshakes, wear one of those lightweight nose-mouth masks, stand or sit a bit father away than usual (so nobody can cough or sneeze on you), and wash your hands regularly.

[jerryo]

Hello Ed,

I finished my first seven days of Vidaza this morning with very few side effects. In addition I received a shot of Aranesp each Monday to help build up my red cells. I also got a shot of Neulasta this morning to build up my white cells. The Neulasta may cause bone pain but I haven't felt anything yet.

I will have a blood draw every Monday just before I see the doctor. They will keep close watch on my counts. So far everything is staying about the same; but they didn't expect any major changes for some time . We are still looking at least four cycles before they do another bone marrow biopsy.

I get a copy of the lab report each Monday so I can track my own numbers.

I still have about the same level of fatigue so I enjoy my naps.

I will enjoy the next 28 days until cycle #2 begins. I have to drive about 22 miles to the hospital where the infusion center is located so I will not miss making that trip each day.

How are you doing?

Jerry
Forward Message

[roger]

I read there are others also starting their journey about now as i will be. Please lets talk to one anothder so we can can compare. No one likes to travel an unknown path alone.

I'm new to the site so I'd apprecite it if someone would tell me how to reply to a post.

Thank you and God bless asll of us

[Neil Cuadra]

Originally Posted by roger

I'm new to the site so I'd apprecite it if someone would tell me how to reply to a post.

The Post Reply button is for adding a comment (a "post") to any discussion ("thread ") that you see. There's also a way to start a new discussion ("thread") for a topic you want to talk about.

For details, see How do I post? and How do I start a new thread? in the Frequently-Asked-Questions.

[jerryo]

Originally Posted by roger

I read there are others also starting their journey about now as i will be. Please lets talk to one anothder so we can can compare. No one likes to travel an unknown path alone.

I'm new to the site so I'd apprecite it if someone would tell me how to reply to a post.

Thank you and God bless asll of us

Roger,
Welcome to the party.
It will be interesting to track your results along with Ed and myself.

I am not sure of the best way to respond to a post but I am sure someone will come to our aid and give us directions.

Jerry