Vidaza

[MagicBob]

I Have Been On Vidaza For 27 Months, And My Mds Responded Very Well For 19 Months. Since November 2012, My Wbc And Granulocytes Counts Have Been On Steady Decline. My Counts In March Were, Wbc 1.6, And Gran. 0.8, I Was Given A Shot Of Neulasta And It Boosted The Counts In April. In May The Counts Fell Again, Wbc 1.5 And Gran. 0.7
And My Oncologist Stopped My Vidaza Treatment For Three Weeks. This Month The Counts Stayed The Same As May And Again He Held Off With The Vidaza. During The First 19 Months, The Only Cells That Were Low Have Been The White. Since January 2013 There Has Been A Downward Progression Of Rbc, Hgb, Hct And Platelets. Plts. Fell To 24, And Received Plt Transfusion, June 4th.
I Am Wondering Whether My Body Is Beginning To Reject Vidaza?

Magic Bob

[Neil Cuadra]

Magic Bob,

I'm confused about the sequence. Did the oncologist take you off Vidaza because it was no longer being effective, or was it an experiment to see how you did without Vidaza even though it was still working to help you maintain your blood counts?

[MagicBob]

Neil, thank you for the prompt response.
The oncologist's reasoning is that while the Vidaza is destroying the bad white cells it also destroys some of the good cells. And by staying off Vidaza for awhile he thinks it will raise the counts high enough to restart treatment.
With the Granulocytes below 1.0 he refuses to administer Vidaza.
Confused and not sure what action I should take.
MagicBob

[billyb]

My wife has been on decitibane for 7 months her counts stay low...wbc 1.5 ...rbc 2.5 ...platelets 6 ( on average ) we are going to try an 8 week cycle instead of 4 to see if counts improve...we get blood and platelets once per week ....what do your differentials look like ( cbc ) ...have you had a BMB lately

[MagicBob]

Billy, I don't know what you mean by "what do your differentials look like (cbc)".
My MDS symptoms are primarily low white cell counts of 1.8 and lower, and low granulocytes 0.9 and lower, and my oncologist refuses Vidaza treatments when gran. are below 1.0. As I mentioned in my earlier post, all of my counts have been on a downward trend since January 2013. Could this be a signal that Vidaza is no longer effective? Thank you, MagicBob

[Neil Cuadra]

Originally Posted by MagicBob

Billy, I don't know what you mean by "what do your differentials look like (cbc)"

Differentials are explained here. It's a test to see which kinds of white cells you have in what percentages, and together with your white count it lets you compute your Absolute Neutrophil Count (ANC). That's where your granulocyte percentage comes into play and why it matters.

You don't seem to have a problem with Vidaza's effectiveness since you were doing OK on Vidaza for over 2 years. If your blood counts are continuing to drop ever since you stopped taking Vidaza then it sounds like your oncologist wants to resume the Vidaza treatment, but only after your ANC is up enough to avoid the risk. Since Neulasta helped you before you might ask if Neulasta could help you again now. Otherwise, I think you should ask your doctor what the alternative is.

[billyb]

Bob there are 3 different types of granulocytes witch help the body fight infection so if they are low along with a low wbc the reasoning for not giving treatment is during treatment your counts can drop even lower and putting you more at risk of infection, its hard to say if the vidaza has stopped working just by looking at a few blood counts because a lot of different factors can make blood counts swing, I would ask your doctor if he / she thinks you need a bone marrow biospy and that should answer your question, doctors work these things out by process of elimination

[MagicBob]

Originally Posted by Neil Cuadra

Differentials are explained here. It's a test to see which kinds of white cells you have in what percentages, and together with your white count it lets you compute your Absolute Neutrophil Count (ANC). That's where your granulocyte percentage comes into play and why it matters.

You don't seem to have a problem with Vidaza's effectiveness since you were doing OK on Vidaza for over 2 years. If your blood counts are continuing to drop ever since you stopped taking Vidaza then it sounds like your oncologist wants to resume the Vidaza treatment, but only after your ANC is up enough to avoid the risk. Since Neulasta helped you before you might ask if Neulasta could help you again now. Otherwise, I think you should ask your doctor what the alternative is.

Neil and BillyB, thank you for the insight about ANC, little did I know about the make-up of the WBC. I am surprised and disappointed, that my Oncologist in Florida and my current one in Pennsylvania never made reference to ANC. I have an appointment on Friday, and another CBC will be done and I will definitely question my oncologist about the ANC count.
As I had mentioned in my original post the VIDAZA had worked well for 19 months, and for the past 8 months there has been a progressive decline in WBC and PLATELETS. The RBC, HGB and HCT have been on a steady decline for the past 6 months. Now we are in trouble with all counts.

I will keep you and BillyB posted with the results of my appointment this coming Friday.
MagicBob

[Wherenext]

I am curious to know the effectiveness of Vidaza as well. My mother was diagnosed Aug 2009 with MDS RCMD and doctor had her on a wait and see until Dec 2012. My mother is 80 yrs old and never told family until about a year ago and she knew very little other than she had an ammune disorder and was seeing a blood doctor. When she said he told her in December to start treatment or die she opted to start treatment. I became fully involved at this point questioning doctors, getting copies of all her tests and that is when I found out her diagnosis and how long ago she was diagnosed.
She has been on Vidaza for 5 months and blood counts really haven't changed that much WBC 2.65 to 3.51 RBC 4.11 to 3.0 Absolute Neutrophils from .18 to . 42 HCT from 38.4 to 30.0 HGB 11.5 to 9.4 Last month they thought had progressed to AML but BMB showed no. This month he said amazing you are not getting sick treatment is up to you. She opted for Vidaza shots for 5 days and nothing more for 6 weeks. I asked if he checked BCL2L10 gene as I understand that is the only way to know if Vidaza is working as blood counts can vary do to foods and exercise. So how does one truly know if Vidaza is working? What should we be watching?

[Birgitta-A]

Hi Wherenext,
To follow the response you have to look at the counts as you already have understood. The important counts are HGB, WBC, ANC and platelets.

Your mother's HGB has decreased, her WBC has increased, her ANC is very low at 0.18 - 0.42. Look out for infections! We don't know anything about her platelets. Hopefully they are OK.

Most doctors wait 6 months before they evaluate the effects of Vidaza treatment.

Since you mention the BCL2L10 gene I think you perhaps can understand quite complicated info. Here are the response criteria for MDS patients:
http://bloodjournal.hematologylibrar...expansion.html

Many patients respond even if they don't meet the IWG criteria.

Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Thalidomide + Prednisone with good response.

[DanL]

Billy,

Here is an abstract from last years ASH conference that talks about using lower doses of decitabine for longer periods of time for AML patients to pretty good success.

https://ash.confex.com/ash/2012/webp...aper51351.html

This might be what your doctor is looking into for Tina's treatment. The results of a very small trial had an 84% response rate when including stable disease, 47% for CR and HI.

[billyb]

Thanks Dan, Any info is greatly appreciated, we are thinking dose reduction instead of a longer time frame, we need to try to get out of the critical ranges in our blood counts, before we catch a major infection ( we had some minor ones ) or some internal bleeding, we have limited options and there are risks associated with those.....Thanks...Billy

[Wherenext]

Thanks Briggetta for the link. My mother's platelets was 110 in January 2013 day treatment started. After first round they jumped to 297 then after 2nd round they dropped to 237 so looked like some response was being made. She then started her third round of Vidaza 7 days followed by 10 of Neuprogen however only two doses given in her new port. 10 days later she was hospitalized with a port infection and port was immediately removed. She spent 4 weeks in the hospital. On day she was admitted her WBC 5.97 RBC 2.81 Platelets 79. It was a roller coaster ride for the next 4 days. Being diagnosed with pericardial infraction, squamous cell skin cancer, high blood pressure. On day of release her counts were WBC 2.67 RBC 2.51 Absolute Neutrophils .8 HCT 28.1 HCG 7.9 Platelets 7.9 last week when she started round 5 platelets jumped from 118 on 5-1-13 to 456 on 6-3-13. The number he seemed concerned with is neutrophil granulates which went in the same time period from 2 to 11.9 this site is amazing so much great help and information.

[Birgitta-A]

Hi Wherenext,
Too bad with an infection in your mother´s port, infection in the pericardium, and squamous cell skin cancer. The high blood pressure can depend on that she was frightened because of all symptoms and treatments.

Her HGB - 7.9 - is a little low. WBC - 2.67 - is too low too and the ANC - 0.8 - too low. The platelets seem to be OK - in fact every figure above 50 is OK for MDS patients.

Good that she is getting Neupogen. I have been taking Neupogen myself during more than 4 years after neutropenic fever 2007. It is not difficult to give that kind of injections - you could learn to do that.

Try to keep the ANC above 1.5 to decrease the risk for infections.
Kind regards
Birgitta-A

[SLB]

Hi magicbob,

I was on vidaza for 8 months & my counts did rise at first but in last couple of months my counts just kept declining. I guess for me the most telling sign that the vidaza wasn't working anymore was that at first I had blasts in my blood & then these disappeared or declined, only to start increasing in about month 6 or 7.. then a biopsy showed I had transformed to AML. I am guessing no blasts have ever shown in your blood work? I would think only a biopsy would really show if vidaza wasn't working anymore? Are the doctors talking about doing one?

[sobrien]

I sure do not understand this MDS disease. It frustrates and puzzles me.
I had 7 rounds of Dacogen with great results (11% blasts down to .001%). The Oncologist stopped treatment for 8 months. Blasts crept up to 6%. Now, I have had Vidaza for two rounds followed by 5 Neupogen shots each time. My blood values are low and lower: WBC: 2.4, NE 0.3, PLT 85, RBC 2.95, HGB 9.5 and HCT 27.7. The mystery is that I feel great. I biked 16 miles on the trail yesterday and walk the dog 2+miles every day. I feel no different now nor do I have any different lifestyle now than I did before my diagnosis 1 1/2 years ago. Yet, I get CBC results like I did today and I get really frustrated and depressed.

[Birgitta-A]

Hi Shirley,
Most doctors continue treatment with Dacogen or Vidaza as long as the patient is responding. I don't understand why your oncologist stopped the Dacogen treatment.

Now we hope that you will respond to Vidaza. You know most of us can't feel if our WBC or platelets are low. Your neutrophils are too low - perhaps you could get more Neupogen?

You manage well with HGB 9.5 - probably your heart function is good.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Positive results with Thalidomide + Prednisone. I have felt fine all these 7 years except when I had neutropenic fever 2007.

[MagicBob]

Originally Posted by SLB

Hi magicbob,

I was on vidaza for 8 months & my counts did rise at first but in last couple of months my counts just kept declining. I guess for me the most telling sign that the vidaza wasn't working anymore was that at first I had blasts in my blood & then these disappeared or declined, only to start increasing in about month 6 or 7.. then a biopsy showed I had transformed to AML. I am guessing no blasts have ever shown in your blood work? I would think only a biopsy would really show if vidaza wasn't working anymore? Are the doctors talking about doing one?

Hi SLB,

Thank you for sharing. My BMB, showed that I had a deletion of Chromosome 7, and Y. IPSS put me in Intermediate II MDS, most recent BMB shows that both are back, (something I don't understand) My and Oncologist and MDS specialist are considering repeating the BMB again. I have an appointment on June 14th, and should know from them, what direction they are considering. MagicBob

[Wherenext]

Mother went for her oncology appointment Monday and Dr said she is not responding to Vidaza. Her options change to Dacogen which he didn't feel would work, do nothing or find a clinical study. We contacted Mayo Clinic in Scottsdale waiting to hear if they have other options. Don't understand no follow up appointment or blood tests scheduled only told to call if gets a fever. WBC 2.5 Absolute Neutrophils .42 Platelets 156 can't remember her other levels. Any suggestion on next step or just enjoy life without a doctor poking her?

[Birgitta-A]

Hi Wherenext,
Yes, many specialists recommend a trial if Vidaza isn't working - the patients counts can decrease quite fast otherwise. Very good that you have contacted the Mayo Clinic in Scottsdale - one of the top clinics in the world for blood cancer patients.

Your mother's platelets are still very good but the neutrophils too low as you are aware of - look out for infections!

You know when the neutrophils are low our own bacteria, virus, fungi etcetera (that we always have in mouth, throat and so on) can start to attack us.
Kind regards
Birgitta-A

[LizR]

Hi Wherenext -

We go to Mayo in Scottsdale and see Dr. Mesa who is a well known MDS specialist. My husband is on Vidaza and so we discussed the options he had when it stopped working and there were possible trials which depended on the patient. He also set blood count limits that indicated when treatment was needed by our local Hem/Onc. Dr. Mesa only sees patients 2 days a week but they work with us since we have to travel.

[billyb]

Wherenext, The Mayo Clinic is a great place, the key to this is wherever you go is to trust and have 100% confidence in your doctor.Sometimes throuhgout this journey things can look grim, so sometimes the best recourse is just to wait and see what happens after a few more doctors appointments before decideing on what direction to take for furture treatment ( stay the course or switch up ) to see what kind of trends are going on, how your mom feels health wise ( daily activitys, energy, appitite, bowel movements, ect. ) go hand in hand with blood reports, you can have low counts but feel good, so thats a good thing, paying attention to overall health is very important ( new pains, changes in dispositition and things like that ). As Birgitta said about infections, there are things we can not control ( internal ) but we can control the external, just be aware of your moms surroundings ( the first thing we do when anybody comes in our house is ask them to wash thier hands ) Wherenext Ill tell you from experience, the sooner you adapt to this new way of life, the less exhausting it becomes, weather you go to the doctor once every 3 months or twice a week, you CAN figure out how to make this seem normal which will make life more easy, which inturn makes life more enjoyable, we are praying for ya'll.... YOU ARE NOT ALONE..... LizR were praying for ya'll to....Brigitta - You are a true Warrior....Love Billy and Tina

[Al's Wife]

Those of you who have followed our posts for the last three years know that we were also told that if Vidaza failed that Dacogen would probably not work. So we went through three clinical trials in-between. Last August one of our doctors recommended hospice, another clinical trial (and when I asked about Dacogen) or Dacogen which he said he did not think would work. He told my husband since he had progressed to AML that he had "weeks not months."
So we went home devastated and waited for the worse. At the time my husband was in a wheelchair, on oxygen 24/7, and could barely pull himeself out of bed. Over the next few weeks, he rallied and said that he wanted to try the Dacogen. We went to a local oncologist (who said that he only gave the Dacogen a 2% chance of working but we felt 2% was better than 0%) and began Dacogen in August of last year.
On Monday (God willing) my husband will have his 12th round of Dacogen. He has been off oxygen for months and no longer uses a wheelchair or cane (which I really wish he would use). He has remained fairly stable these last eleven months, needing monthly transfusions and occasional platelets. Last Monday his platelets were 53,000 (we are wondering if this was a lab error but we'll know this Monday when he goes in again for labs, doctor visit, and cycle 12 of Dacogen) which is a three-year high. He also did not need a transfusion and his last one was over a month ago.
We of course are cautiously optimistic but we've learned with MDS and now AML that we are on one heck of a rollercoaster ride.
We just try to enjoy each and every day. We have been able to travel, go to car shows (my husband is an antique car owner and lover), and although we don't have the quality of life we once did, it certainly beats the alternative.
And I am not naive, I do know that what works for one doesn't work for another. But I just want to stress that you need to be your own advocate, speak up, suggest, don't give up, and keep trying. I know there are others on here that had bad results from Vidaza and/or Dacogen. But we have been blessed that at least for my husband, Dacogen has given us some additional time together.
God bless and keep the faith.

[billyb]

There are some people out here that are very fortunate to be able to achieve remission, unfortunately we are not in that class, but we are in the class where AML is fully alive and running rampant in my wifes body, Decitibane has also been good for us, we try not to stress for how long it will work, we are greatful it is working while it can, if you crossed paths with my wife you would never know that shes at the doctors office 11 days a month, or needs 2 bags of blood and 1 bag of platelets per week just to survive, but thats what works for us, sure we had to rearrange some things, she gets tired easily, we get fustrated at times, get scared at times, worry at times, even mad at this disease at times, its not what we signed up for, but overall we have a good life, when your doctor says every case is different, it usually is, no one can predict what the furture holds, so we mostly try to just enjoy each day

[LizR]

billyb,

All you've said is completely true. There is always a "next test" to either look forward to or dread but keeping a positive outlook makes it all tolerable. We've learned to look for the good little things and not just wait for the big ones. There was a moving truck in front of our very grumpy next-door neighbor's house this morning. Little thing or big thing? Doesn't matter. Bob's big smile was so welcome.

All our good wishes headed to both you and Tina!