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MDS Myelodysplastic syndromes

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  #1  
Old Thu Aug 24, 2006, 03:32 AM
John Clark John Clark is offline
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Location: Brigg, Lincolnshire, England
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Vidaza progress query

Hi All,

Completed one cycle Vidaza - no side effects

Due to start second cycle next week.

All counts well down Hb 7.2 - Neuts 0.2 - Plats 10

Transfusions started for Hb and Plats.

Taking shots of Neupogen every 3 days - no effect

What do we do about Neuts?

I have heard of Neulasta (sp) but advised this is not for myelo disorders.

Any help please would be appreciated.

John
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Age 71 Male. Diagnosed MDS(RAEB2) in January 2000. On Aranesp, Neupogen and Warfarin. Counts down in January this year. Started 1st. course Vidaza August 2006 when all counts crashed.
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  #2  
Old Thu Aug 24, 2006, 07:40 PM
Loretta Loretta is offline
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Vidaza (John)

John, My dr. told me that counts will fluctuate during the 1st three to four sessions on Vidaza, which is exactly how it happened for me and others I've talked with. I would go in for CBC every wk. and continued needing red cell transfusions for the first 3 months (or three sessions) on Vidaza. Then, my counts came up to normal and became transfusion independent. However, it seems that many people have different responses to Vidaza. So, you probably need to give it a couple more months to see how it is working for you. My platelets and ANC were not a problem.
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Loretta 58
MDS-RAEB dx 6/05
positive response to Vidaza 8/05 to 11/06
progressed to AML 11/28/06
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  #3  
Old Sat Aug 26, 2006, 06:22 AM
John Clark John Clark is offline
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Thanks Loretta.

I am getting blood tests every 3 days as I am also on Warfarin and there is no information (no tests have been done) on the effects combined with Vidaza. Only started transfusions (RBC's & Plats) after I started Vidaza.

Its the neuts I am bothered about. They don't seem to move off the 0.2 level and I had heard Neulasta had been used to some effect but wasn't approved for Myeloid disorders. Neupogen (taken every 3 days) has no effect.

Start second cycle on Tuesday (Monday holiday in UK). Counts from Friday are Hb 8.7 - Plats 35 - Neuts 0.2.

Anyway thanks for your help

John
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Age 71 Male. Diagnosed MDS(RAEB2) in January 2000. On Aranesp, Neupogen and Warfarin. Counts down in January this year. Started 1st. course Vidaza August 2006 when all counts crashed.
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  #4  
Old Sat Aug 26, 2006, 09:13 AM
knstone knstone is offline
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Hi John,
My Dr. said that Neumega for platelets was not good for MDS. Are you still taking Aranesp or Procrit? Sometimes they can help platelets in rare cases.

It does seem that it takes a few cycles for Vidaza to work and the counts to stabilize.

Hang in there and hopefully the platelets will get better.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #5  
Old Sun Aug 27, 2006, 11:08 PM
Loretta Loretta is offline
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John's Vidaza

John, best of luck with Vidaza. Just remember, it doesn't work for everyone, but it does take 3 to 4 sessions before you will see a response. I'm sure if after 6 sessions your counts don't get better, your doctor might try one of the other new drugs. In my case only by hemoglobin was really bad, and I only needed red cell transfusions every 3 wks. until I began responding to Vidaza. Several new drugs are getting good responses. Keep putting one foot in front of the other and take care of your self the best you can.
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Loretta 58
MDS-RAEB dx 6/05
positive response to Vidaza 8/05 to 11/06
progressed to AML 11/28/06
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  #6  
Old Wed Aug 30, 2006, 10:22 AM
John Clark John Clark is offline
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Quote:
Originally Posted by knstone View Post
Hi John,
My Dr. said that Neumega for platelets was not good for MDS.
Are you still taking Aranesp or Procrit? Sometimes they can
help platelets in rare cases.

It does seem that it takes a few cycles for Vidaza to work
and the counts to stabilize.

Hang in there and hopefully the platelets will get better.
Hi Kirby - Platelets not worrying me - Just Neuts.

Vanessa,

Just had results after first cycle - ALL counts up - just a touch but it's in the right direction. Neuts is still a worry - Dr says they may come up later in treatment - very early yet.

Still interested in Neulasta though.

Thanks for encouragement

John
__________________
Age 71 Male. Diagnosed MDS(RAEB2) in January 2000. On Aranesp, Neupogen and Warfarin. Counts down in January this year. Started 1st. course Vidaza August 2006 when all counts crashed.
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  #7  
Old Sun Oct 29, 2006, 08:25 PM
Linda Linda is offline
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Cool Neuts?

Hi, John,
I am not sure what you mean by neuts. My husband is on his 10th cycle of Vidaza. He had very low platelets and granucites. His WBC was .2, RBC was not very high, but not to the point of concern. He had neupogen and neumega shots for months every day. This was right along with the Vidaza treatments. He showed improvement at 3 months. This continued. The growth factor shots were stopped in May. His doc is going to stop the Vidaza after this last one or the next. I am a bit confused. He wants to see if Bob's marrow will work on it's own. It is just about different for every patient.

My prayers are with you and all on the lists.
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Linda, Wife of Bob, dx REAB-1 19 Jan. 06. Beginning numbers 19% blasts, Vidaza for 10 cycles then stopped responding, as of Apr 07 REAB-T Blasts at 20 (AML). 2 cycles of Dacogen May and June, 3rd in Sep. Counts bottomed out (WBC and Plts). BMB in Oct. showed blasts at 51%. NC
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  #8  
Old Mon Nov 27, 2006, 09:42 PM
larry gard larry gard is offline
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Vidaza and Thalidomide

John:

I responded under Questions of others using Thalidomide since I use it in combination with Vidaza. You might refer to that thread.

larry gard
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  #9  
Old Tue Nov 28, 2006, 02:47 AM
Steve Kessler Steve Kessler is offline
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Unhappy Just adding info about side effects for me

I just finished my second round of Vidaza and had an unusual reaction, I think. My first couple of shots each session were in the abdomen, outside of the sensitive zone, supposedly. I developed shooting pains in my tummy and bad constipation each time. I was taking zofran pre-shots and one of the nurses mentioned that it was constipating, so I stopped it. Fortunatley, I haven't suffered nausea, but the stomach pains and constipation were severe. Any other similar experiences?
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Steve Kessler,Age 71, Dx 3/2001, Currently AML converted from MDS, 5q-, 11q23, Negative response to Aranesp, Revlimid. Partial response to Vidaza in the past. On a study using ON1910.NA, counts too low to go to Stanford on schedule.
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  #10  
Old Tue Nov 28, 2006, 08:33 PM
larry gard larry gard is offline
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Vidaza Reaction

Steve:

My Vidaza injections have been in my arms with out any complications. I usually alternate arms for the 5 day injections. You might try that instead of your abdomen. For constipation I am using stool softner and Prune juice.

larry
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  #11  
Old Sat Dec 2, 2006, 12:39 PM
John Clark John Clark is offline
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Thanks to all who replied. Now in fifth month of Vidaza with counts going up and down - overall just slightly up. Platelets a worry - holding at around 20-30. Constipation VERY severe. Told it was caused by Anti nausea drug but even without this drug still severe. Tried 5 different prescribed medications for constipation - no effect.

All shots into tummy (66 in all so far). Seems to burn from inside - smarts like sunburn on outside with similar skin peeling and a residue of a brown sunburnt patch.

No real effects after first two cycles but as time progresses effects of the chemo become more annoying especially nausea, constipation, loss of appetite and constant sleeping (anemia I guess).

Had some very low counts - Hb 7.9 Platelets 10. Neuts and WBC seem to vary over quite a wide range Neuts 1.2 to 0.30 - WBC from 1.0 to 3.0.

Waiting results of another BMB. This should show any progression in the MDS either up or down.

Regards to all,

John Clark
MDS (RAEB2) Age 71 (soon) Diag. Jan. 2000
Still on Aranesp and Neupogen with Warfarin.
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Age 71 Male. Diagnosed MDS(RAEB2) in January 2000. On Aranesp, Neupogen and Warfarin. Counts down in January this year. Started 1st. course Vidaza August 2006 when all counts crashed.
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  #12  
Old Wed Jan 10, 2007, 09:27 AM
John Clark John Clark is offline
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Counts dropped again with Vidaza. Needed transfusions of Platelets and Red cells on Christmas eve.

I decided to halt treatment to see if my counts would come up on their own. (saw similar post about stopping for a while and thought I would try it).

Counts dropped for a further 2 weeks but this week they came back up on their own.

Hb from 7.8 to 9.7 and Plats from 12 to 73.

Quite pleased with the way my body is reacting and if my next counts are further up I will start the Vidaza again but at a reduced dose, probably 100ml rather than the full dose of 150ml.

My doctors have been very supportive and have agreed with every step I have taken.

I hope this tale will help others travelling the same road, as I have been helped by previous postings on Vidaza.
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Age 71 Male. Diagnosed MDS(RAEB2) in January 2000. On Aranesp, Neupogen and Warfarin. Counts down in January this year. Started 1st. course Vidaza August 2006 when all counts crashed.
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  #13  
Old Wed Jan 10, 2007, 05:55 PM
Debster01 Debster01 is offline
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hi John! My dad had his 2nd round of Vidaza early in December. He has now been in the hospital almost 2 weeks with low low counts. Today his white is .7, and his platelets have been less than 5. He is getting neupogen shots with not a whole lot of response, and many platelet transfusions. They did a bone marrow and his blasts are 12% I am hoping and praying they eventually go up...any insights would be greatly appreciated Thank you-Debbie
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  #14  
Old Wed Jan 10, 2007, 06:28 PM
John Clark John Clark is offline
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Debbie,
You really need to know what his low point was before starting Vidaza. Then, after a few months treatment (different times for each patient) the counts should be about 25% above this low point. If they are not increased, I found, I had to stop the Vidaza until the counts had increased to this +25% level. This allowed the body to produce the required cells on it's own without the Vidaza knocking the counts out even before they start to recover.
During this time I found transfusions are quite commonplace to counteract the action of the Vidaza.

If after 42 days without Vidaza the counts still remain low then consider starting the Vidaza again but at 50% of dose.
If before the 42 days the counts do come up to the +25% mark then Vidaza can be started again.

I must point out the foregoing is only my interpretation of the treatment as it applied to me and may not be correct or suitable for other people.

I have found that Pharmion have been most helpful in providing information to doctors who request it and will provide algorithms of treatment cycles and quantities of Vidaza to be used in all types of cases.

I have never been admitted to hospital for the treatment and only as day patient for transfusions. All my treatment cycles were done as an outpatient and the injections only take a few minutes.

I hope the above has been of some help - unfortunately every patient seems to react differently and therefore no course of treatment is the same for everyone.
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Age 71 Male. Diagnosed MDS(RAEB2) in January 2000. On Aranesp, Neupogen and Warfarin. Counts down in January this year. Started 1st. course Vidaza August 2006 when all counts crashed.
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  #15  
Old Wed Jan 10, 2007, 09:45 PM
Debster01 Debster01 is offline
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Thank you so much John for the info. I am not sure when they will restart the Vidaza-he is so low they have not discussed that yet. I sure hope these counts get a boost and quick!!! Deb
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  #16  
Old Sat Apr 7, 2007, 08:09 PM
Dave Dave is offline
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Cool Vadazza

Just completed 6 rounds, no improvement in counts, and just did 4 days in hospital with a leg infection, not having a fun time with this MDS at all.

Now they are talking BMT and I should begin looking for a match.....here we go.......
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  #17  
Old Sun Apr 8, 2007, 10:52 AM
John Clark John Clark is offline
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Now taken off all Vidaza - no success after 6 rounds. Counts going down faster with the treatment.

Now on blood transfusions every 30 days and the subsequent iron overload.

I suppose you are lucky Dave that they are talking BMT, I'm a bit too old for that.
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Age 71 Male. Diagnosed MDS(RAEB2) in January 2000. On Aranesp, Neupogen and Warfarin. Counts down in January this year. Started 1st. course Vidaza August 2006 when all counts crashed.
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