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MDS Myelodysplastic syndromes

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  #1  
Old Thu Mar 15, 2012, 06:25 AM
Neel Neel is offline
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treatment so far

Hi, My father was diagnosed with MDS RAEB-2 in Oct 2010 , he has been taking thalidomide 75mg dosage since April 2011. His count improved slightly and stabilized. Hb in the range of 9-10, Platelet 20000-45000 and WBC 2400-3000. However since Dec-2011, his Hb started steady decline and we started with Cresp 200 (Aransep) Inj once fortnightly. This didnít helped his gradual decline in Hb but helped in raising platelets to remain in 40000-60000. No effect on WBC. on 12/03/2012 his Hb tanked to 7.4 , platelet were 50000. We decided for blood transfusion and on 13/03/2012 he was transfused 2 units of blood. However after 2nd transfusion he started shivering badly and developed fever. e was given paracetamol and antialergic injection. The fever subsided in the morning. The report in the morning after transfusion was 8.8 Hb and 24000 platelets ??. Next day he had blood in his urine. He was then advised SDP (Platelet Transfusion) and was given 1 SDP with the same blood group donor. In the evening he again developed fever. The next day CBC report showed Hb 8.1 Platelet 46000. he is currently been again transfused 1 unit blood. He is still Sometimes having blood in the urine. Doctor has advised revolade 50 mg(promacta) along with thalidomide 100mg. He is still in Hospital. Kindly provide inputs and valuable suggestions.

Regards,

Neel
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Father age 64 diagnosed with MDS RAEB-2, with 15%-18% blasts in October 2010. Only had blood and platelet transfusions. Ayurvedic treatment which showed result for arnd 5 months. Started Tahlidomide 100 mg started on 22 nd April 2011. Revolade 50 mg started on 2 nd april 2012.
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  #2  
Old Thu Mar 15, 2012, 04:28 PM
Birgitta-A Birgitta-A is offline
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Thalidomide + Revolade

Dear Neel,
As far as I understand Thalidomide 75mg/day isn't working so well now and your father's doctor is increasing the dose hoping that your father will respond again.

Many high risk MDS patients try Vidaza as first drug. Thalidomide is not approved for MDS.

Some patients who stop responding when they get Thalidomide try the similar drug Revlimid with positive effect.

Hope Revolade (Promacta) will increase the platelets - several members of this forum have had positive effect when they are treated with Revolade, that not is approved for MDS.

Thalidomide, Revlimid and Vidaza don't increase the counts at once but can decrease counts initially.

Hope Thalidomide + Revolade will have a positive effect!
Kind regards
Birgitta-A
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  #3  
Old Thu Mar 15, 2012, 08:40 PM
riccd2001 riccd2001 is offline
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Pre-meds BEFORE PRBC transfusions...

I'm a patient NOT a doc, but bad reactions after PRBC transfusions (e.g., uncontrollable shivering, fevers, blood when urinating,etc.) would indicate a poor match of donor product.

YMMV but for me a pre-med set comprising 2 reg. tylenol, 2x25 benadryl, and IV 100ml hydrocortisone prevents bad reactions to PRBCs that are given but classed as "least incompatible."
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #4  
Old Sat Mar 17, 2012, 01:23 AM
Neel Neel is offline
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Out of Hospital but developed fever

Thanx for your posts. My father is home now. Got him discharged day before. However yesterday evening he again developed fever. reached upto 101 F and was given paracetamol. However he is till having fever in arnd 99.5. (all readings are in the arm and not in mouth). Blood and urine culture are not negative for bacterial growth. Before going to hospital for transfusion he was (though didnt monitored) not having any fever for arn 10 months. however as soon he entered the hospital, before transfusion the nursing staff measured the temp and it showed reading of 99.5, was given paracetamol. after that he was transfused two units of blood and arnd 1 hr after transfusion developed severe chills and fever. was given antialergic injection and paracetamol. the temp became normal after 5 hours. he didnt had any temp for 30 hours and before transfusing 3rd PRBC the thermometer again showed temp of anr 99.5. was again given paracetamol. He didnt had fever for another 30 hours. But since yesterday evening he is continiously having fever and even after paracetamol the temp is till there.

Any suggestions/advise/inputs ?

Regards,

Neel
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Father age 64 diagnosed with MDS RAEB-2, with 15%-18% blasts in October 2010. Only had blood and platelet transfusions. Ayurvedic treatment which showed result for arnd 5 months. Started Tahlidomide 100 mg started on 22 nd April 2011. Revolade 50 mg started on 2 nd april 2012.
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Old Sat Mar 17, 2012, 08:59 AM
CatherineJ CatherineJ is offline
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Try not to worry too much about a slight fever. I've had a fever ranging from 99-100 everyday for months now... I keep track of it several times a day. Buy a thermometer that reads from the ear, they are the most accurate and fast way of reading.

The hematologist said that having a low grade fever can be part of the disease and to call if my fever gets above 100.5. They ran a multitude of tests trying to find an infection at first, but there wasn't an infection to explain fever. I'd say keep monitoring fever, but having a low grade fever of 99.5 without infection isn't abnormal for MDS as far as I've been told.

Best of luck.

Catherine
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25F, Dx RCMD MDS 1/2012, on wait and watch for who knows how long
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  #6  
Old Sat Mar 17, 2012, 07:56 PM
usaf1125 usaf1125 is offline
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Thumbs up The old Welshman

I get 2 units of blood every 2 to 3 weeks depending on my CRT level. I don't care what my other numbers are, they just make you worry. I can be reading at night and feel my temp. rising, it will go from 99 to 101, take a couple of aspirin and it goes down. Some nights I wake up soaked from sweat, have to change everything, then go back to sleep. When I first started getting blood, I would get a fever, 101 to 102, now I get Tylenol, Benadryl and Hydrocortisone, that takes care of it. so far I have had 262 units of blood, I don't know if this helps you any, my only advice is don't let it run your life, there are only two options, it gets better, or it gets worse, and there is nothing you can do about it. Trust your doctor and hope they find something new. I know it's hard but keep smiling, keep smiling.
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82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net
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  #7  
Old Sun Mar 18, 2012, 02:26 AM
Neel Neel is offline
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thanx

thanx all for your posts and encouragements. We are monitoring his temperature and giving him antibiotics as of now. Yes i understand that fever is part and parcel of this disease. When my father was diagnosed with this disease, we were told so. However he didnt have any episodes of fever or temperature for last 10 months, therefore we were concerned. Anyway it is a disease which gives surprises every now and then.

Regards,
Neel
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Father age 64 diagnosed with MDS RAEB-2, with 15%-18% blasts in October 2010. Only had blood and platelet transfusions. Ayurvedic treatment which showed result for arnd 5 months. Started Tahlidomide 100 mg started on 22 nd April 2011. Revolade 50 mg started on 2 nd april 2012.
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  #8  
Old Tue Apr 24, 2012, 04:42 AM
Neel Neel is offline
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again hospitalized

My father was again hospitalized on 14/4/2012 due to high grade fever and low blood countss he is stil in hospital,recd 3 u nits of blood and 3 unit of sdp platlets. he is also being given antibiotics for fever/infection. he started revolde 50 mg daily along with thalidomide 100 mg daily. Revolade was started on 2nd april 2012. However till now their is no improvement in the platelets, however we have noticd a lot of flactuation in his plateletes counts either due to medicine effect or due to false reporting by labs. Doctor has now advised to inc the dosage of revolade to 75mg. We have also noticed his blood and platelets re not maintai ing or increasing theyare on downfal. Atpresent the min isue are fever and low platelets. Kindly send in ur valuable inputs. Regards, neel
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Father age 64 diagnosed with MDS RAEB-2, with 15%-18% blasts in October 2010. Only had blood and platelet transfusions. Ayurvedic treatment which showed result for arnd 5 months. Started Tahlidomide 100 mg started on 22 nd April 2011. Revolade 50 mg started on 2 nd april 2012.
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  #9  
Old Tue Apr 24, 2012, 05:59 AM
Birgitta-A Birgitta-A is offline
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Thalidomide + Revolade (Promacta)

Hi Neel,
As far as I understand has your father has been treated with Thalidomide since April 2011. He initially had positive effect but now the drug is not working so well. Is it not possible to change to Vidaza that is the first drug for MDS patients?

Good that your doctor is trying Revolade (Promacta) for low platelets. I think it is common that the drug isn't working directly.

All infections will give low counts and it is difficult to evaluate the effect of for example Revolade when your father has high grade fever.

If his WBCs are low he perhaps needs Neupogen or similar drugs that can increase the WBCs and prevent infections.
Kind regards
Birgitta-A
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