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MDS Myelodysplastic syndromes

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  #1  
Old Mon Apr 30, 2012, 01:03 PM
Neel Neel is offline
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Location: delhi india
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starting decetabine

My father is still in hospital since 14 april, stil having fever even after daily injection of antibiotics. The fevers reaches to 102 and he has to take paracetamol he is taking arnd 4-5 paracetamol in 24 hrs to control the fever.

All cultures are sterile/negative.

Doc saying fever is due to disease progression. We have now/today stopeed thalidomide and revolade as both were not showing any positive effects.

His platelets are the main concern as they are being transfused every alternate day. They every alternate day they drops to 2000-3000.

Doc say that we have reached end of wall and we have to start decitabine now and also not to expect much from decitabine therapy.

Kindly give ur sugestions and experience with decitabibe/dacogen espicially when platelet trasnfusion dependent.

Can decitabine be started when he is having fever ?

Also instead of dacogen, doctor will be using decitex which is decitabine (generic version of dacogen).

We are really very afraid at this point.

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.

Last edited by Neel : Mon Apr 30, 2012 at 11:04 PM.
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  #2  
Old Tue May 1, 2012, 04:57 AM
Birgitta-A Birgitta-A is offline
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Dacogen

Hi Neel,
Too bad that the antibiotics are not helping your father - perhaps other types of antibiotics could have better effect. It is very common that they never find the agent (bacteria, virus or fungi) that causes the fever so that they have to try different antibiotics and hope for response.

Remember that even paracetamol can decrease platelets so it is better to try to take as few as possible http://www.nhs.uk/Conditions/Painkil...e-effects.aspx

As you probably know it takes several cycles before Dacogen is working. It is common that patients need supportive therapy with blood and platelet txs when they get Dacogen or Vidaza.

Since the fever can depends on an infection I think it is better to wait with Dacogen until your father is free from fever.
Kind regards
Birgitta-A
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  #3  
Old Tue May 1, 2012, 07:28 AM
milliken2 milliken2 is offline
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Fever and Dacogen

Neel;

If your father is running a low grade temp - 100 or below - I have been told by our Docs that it is safe to administer the Dacogen - but if it has been holding steady at that rate or above for 3 or more days, then his system is already compromised, and I agree with Briggita - hold the Dacogen - since we know the Dacogen will lower his levels as well. Good luck to you.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.

Last edited by milliken2 : Tue May 1, 2012 at 07:29 AM. Reason: misspelled word
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  #4  
Old Tue May 1, 2012, 10:12 AM
Neel Neel is offline
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what abt low platelets.

Thanx for the reply,

We also have this concern of starting dacogen when he is already having fever. The doctor said that when all cultures are sterile/negative, then the fever might be due to disease only and says that they can start decogen.

We also want to wait, but the biggest problem is his platelets which even after transfusion are not giving much effects, they were 3000 ysday and after 1 SDP today were 18000. we might be needing platelets tommorow. therefore he is requiring platelets every alternate day. therefore in this condition when he is requiring platelets every alternate day, brining him home is difficult task. Moreoevr they ahave tried broad spacturm antibiotics for last 14 days and without any results. The fever is still there.

We have been told that paracetamol (what he is taking ) is safest. I agree that paracetamol also knocks the counts, but so do the fever. so if we dont give paracetamol, the fever knocks the count. we have to chose our poison there. Also the fever knocks him down also physically, therefore giving paracetamol is more of a compulsion then a choice.

We really dont know what to do at this moment.

Hoping for the ebst and praying for the best.

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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  #5  
Old Tue May 1, 2012, 01:08 PM
Birgitta-A Birgitta-A is offline
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Fever

Hi Neel,
Actually it is not possible to identify agents that cause infections when some kind of treatment has started - at the same time they have to start treatment at once that is before they have got the results from the tests.

As I wrote before it is very common (50% of the cases) that they don't identify the agent. If they don't get response with one drug they have to try another. "Empirical administration of broad-spectrum antibiotics is necessary for febrile neutropenic patients because the currently available diagnostic tests are not sufficiently rapid, sensitive. or specific for identifying or excluding the microbial cause of a febrile episode."http://www.ccspublishing.com/journal...enic_Fever.htm

It is true that paracetamol is better than other drugs that can decrease fever.

Hope they will find antibiotics that are effective!
Kind regards
Birgitta-A
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  #6  
Old Mon May 7, 2012, 12:16 AM
Neel Neel is offline
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what next

We brought my father home from hospital ysday. He is still running fever , but it might be due to disease as the same goes away on its own. At the time of discharges and after several platelet and blood transfusion his counts ysday morning were

HB :- 9.8
Platelet :- 46000
TLC :- 1900

He had developed High BP after transfusion of blood. Maybe wrong blood or reaction to the blood.

We have again started thalidomide 50 mg ysday after 5 days of rest. hoping it works.

Dont know till when his platelet lass, i have noticed three red spots/Petechiae on his scalp today morning, maybe due to low platelet count or maybe just like that.

We are clueless at the moment, dont know what to do.

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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  #7  
Old Mon May 7, 2012, 04:27 AM
Birgitta-A Birgitta-A is offline
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MDS

Hi Neel,
For the moment your father's counts are OK except that the WBCs are low. The supportive therapy with txs and antibiotics at the hospital have had good effect. Perhaps your father could get Neupogen for the WBCs?

Petechiae are not common at the scalp - many patients have petechiae at the lower parts of the legs.

Hope the fever will decrease and that your doctor thinks your father could try decitabine.
Kind regards
Birgitta-A
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  #8  
Old Sat May 12, 2012, 01:41 AM
Neel Neel is offline
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Location: delhi india
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Still having fever

My father is still having fever, the fever started on 10th April and it is more than 1 whole month he is having fever. this is even after a course of Continious wide spectrum antibiotics and anti fungal for almost a month. the blood culture, throat swab culture, and urine culture all came negative/sterile. he is requiring platelet almost every 3 days and that too 2 unit SDP at a time. Its very unfortunate to see my father suffering so much. Doctor is advising to start decitabine as early as possible even in fever, as he says that its not wise to wait till fever subsidized as we have already tried all the antibiotics and anti fungal.

Kindly send ur inputs what to do ?

Can we do more ??

Also kindly share your experience of treatment with decitabine , i mean what to expect as side effects, in regard to counts in the first month, how they behave/fluctuate and how much transfusion of platelet and blood is required and how often and duration of hospitalisation and what to expect from the treatment

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 Sat May 12, 2012, 04:47 PM
Birgitta-A Birgitta-A is offline
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Decitabine

Hi Neel,
We still don't know which patients that will respond to decitabine, so nobody will know if your father belongs to the patients who will improve. In this study the overall improvement rate (OIR) was 23%.
https://ash.confex.com/ash/2011/webp...aper41286.html

The most frequent drug-related adverse effects were low neutrophils, anemia, low platelets, fatigue, and low WBCs.

The adverse effects will come after the first cycles and the response a little later. It is not possible to tell how many txs that will be needed.

We can only hope that your father will respond if you try this treatment.
Kind regards
Birgitta-A
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  #10  
Old Sat May 12, 2012, 07:54 PM
kgtuck kgtuck is offline
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Wink Dacogen

Neel, I notice that your dad and I are about the same age and same diagnosis. After starting Dacogen, it took 3 months to show improvement and when it did, my counts became stable and have continued to be stable for 3 years. During those first 3 months, my counts bounced up and down, hgb, platelets and white count. I had to have 5 blood transfusions and 6 platelets added during that time until my counts stabilized. I do know that it could take longer, possible 6 months or so for some people. One nurse put it simply, "you have to get enough of the drug in your system before you can expect improvement". I just wanted to share my experience so that you won't be too discouraged! My only side effects are constipation and a day or so fatigue the week after treatments, a slight change in taste/appetite, and also white counts drop slightly, then rise during the 3 weeks between treatments. The best to you and your dad!
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66 yr female;diag 6/09; MDS, unspecified, normal cytogenetics: blasts 10%; successful Dacogen;every 4th wk.; as of Aug.'12 changing to every 5th wk., stable at Hgb 12-14/platelets 200-300/wbc 2.-3.
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  #11  
Old Mon May 14, 2012, 07:01 AM
milliken2 milliken2 is offline
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Dacogen

Neel;
Earl had had 2 cycles of Dacogen, and so far no change. But, like the ladies have told you - it may take up to 6 cycles before you see improvement. Make sure he keeps hydrated, and keep him away from crowds - even lots of visitors - since he is already in a compromised state. If you don't have them already, get some masks that he can wear if 'strangers' are around - to help protect him from breathing in any germs that may hurt him more. I know Earl doesn't like to wear one - but when we have to go to the Dr - where there are already sick people - I make sure he does.
When we were in Florida - the one time he was hospitalized - his temp went up to 102.8. They had him on Vancomycin through his PICC line. They never did find out where the infection came from. They even removed his PICC line and cultured it as the infectious control Dr. was sure the PICC was the cause - and I was sure it wasn't - because it was me who was cleaning it and flusiing it daily. When it came back negative - she was hard pressed to tell me (the nurses already had told me the results) - and I made her say it twice, because she purposely mumbled it the first time - she didn't want to admit she was wrong. Somewhere, he got gram negative bacilli - and became septic. We have no idea, and neither did they. Does your Dad have a Port in place - or a PICC line in? If so - make sure they are cleaning them well daily - and especially before any treatment is given.
I know Earl's taste buds have changed since he started treatment - he says things have a metallic taste - and of course - his appetite is way down. But - if he decides he wants anything - I run for it - as any nutrition is better than none. Get some Ensure or Boost - and some carnation instant breakfast - try to use the Ensure or Boost for the liquid - add some fruit or ice cream - blend it - and see what he likes - you may have to change the 'recipe' so to speak. Too - you can put the mixture in ice cube trays - and especially when he is feverish - let one dissolve - the cold will help the fever a bit, and nourish him at the same time.
Also make sure he is having regular bowel movements - use a stool softener if necessary - especially after starting the Dacogen - as it will tend to constipate you.
Sorry if I sound like the nurse - but I am - and I guess that will never change.
Beth
__________________
Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.

Last edited by milliken2 : Mon May 14, 2012 at 07:04 AM. Reason: missspelled word
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