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  #1  
Old Tue Jul 15, 2014, 12:08 AM
Bella37 Bella37 is offline
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Ongoing fever

Hi everyone my dad has mds and has had a fever for almost 3 weeks now and the doctors don't know the cause.

Just wondering if anyone has experienced the same we are getting really worried.

Thanks!
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  #2  
Old Tue Jul 15, 2014, 10:12 PM
Neil Cuadra Neil Cuadra is offline
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Bella37,

Prolonged fevers can have many causes. One study found that 28% of MDS patients reported fevers affecting their quality of life.

If you search these forums for "fever" you'll find a number of discussion threads about other patients with ongoing fever, including ones named high grade fever for last one and half month and Worried about fever.

Presumably your dad's doctors looked for signs of an infection, since MDS patient who are neutropenic can be subject to opportunistic infections. Fevers can also result from medications, nutritional issues, alcohol and drug use, disease treatment, and in the case of MDS can supposedly result from the disease itself. Unexplained fevers sometimes disappear as mysteriously as they appear. Is your dad under active treatment for his MDS?

Without knowing the cause of a fever, doctors may choose to prescribe antibiotics and/or watch for or test for other symptoms. I think it's best to follow your doctors lead, since they know your health conditions best.
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  #3  
Old Wed Jul 16, 2014, 05:42 AM
Mseth Mseth is offline
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Low grade fever

Quote:
Originally Posted by Bella37 View Post
Hi everyone my dad has mds and has had a fever for almost 3 weeks now and the doctors don't know the cause.

Just wondering if anyone has experienced the same we are getting really worried.

Thanks!
As per my mothers docs, temp above 100.4 F is fever in medical terms.

My mother has had fever for last few weeks, during the course of the day it normally ranges between 98.8 F to 99.4. In June her temp crossed 100.4, so she was admitted in hospital and received Iv antibiotics, her temp returned to normal but after discontinuation of the oral antibiotic at home, it again climbed up into the 99's but stays under 100. All cultures prior to antibiotic and after discontinuation are negative. The internal medicine doc says it could be because of mds.
We don't know what's going on..hope it disappears soon as it's becoming a cause of great worry.

All the best
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #4  
Old Thu Jul 17, 2014, 08:07 AM
Bella37 Bella37 is offline
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Thanks for the replies, he was only diagnosed in April and was going along ok having blood transfusions every couple of weeks until the fevers started 3 weeks ago. We are now waiting in the biopsy results to see if the mds had progressed and they need to start other treatments. I'm hoping these fevers stop soon.
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  #5  
Old Thu Jul 17, 2014, 02:09 PM
Mseth Mseth is offline
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My mothers latest labs shows an increased TLC of 14,000 ref range 4,000-11,000. I think this means an infection of some sort, which could be causing the fever. Since she was treated with antibiotics just 4 weeks back, maybe this is a newly acquired infection. Seeing the doctor tomorrow.

Bella37, is your Dad getting a high fever? Have they tried a broad spectrum antibiotic? What tests have been run?
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #6  
Old Thu Jul 17, 2014, 10:05 PM
Bella37 Bella37 is offline
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Yes he has been having high grade fevers for 3 weeks now, has has lots of tests to try find an infection but they have found nothing. Just waiting on the biopsy results. They have been giving him antibiotics although they can't target anything as they don't know where they are coming from.

He has has MRI chest and heart X-ray and ultra sound blood tests and urine tests and still nothing!
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  #7  
Old Sat Jul 19, 2014, 02:31 PM
Mseth Mseth is offline
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Hi Bella37,

I can understand your concern.

While my mother was on Tylenol for the fever, platelet counts reduced. She discontinued Tylenol and the count went up again. It's good to keep a watch on this aspect.

Hope your dad has a diagnosis on his fever soon.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #8  
Old Sun Jul 20, 2014, 07:33 AM
Julianna Julianna is offline
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I understand a bit of your anxiety. I've been having periods of very high fevers & shivers for weeks & a cause was never found. But it did settle down for me. But it still happens to me a few times a year. I am otherwise not too bad in between.

Sometimes our bodies just do what they need to at the time. Hard to accept when fevers make you so exhausted. Hope it settles down soon. xo
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #9  
Old Mon Jul 21, 2014, 05:01 AM
Bella37 Bella37 is offline
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We finally have a result from his biopsy and it shows the mds has quickly progressed to acute leukaemia. The doctors want to treat it with a very strong chemo which means another month in hospital! It's going to be a hard time ahead but we are staying positive! Thanks for your responses and all the best!
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  #10  
Old Mon Jul 21, 2014, 10:48 AM
Whizbang Whizbang is offline
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Bella,

I just finished my 7+3 (the standard treatment) for Leukemia, it actually wasn't as bad as described for me... It's been 15 days since the first dose, so time today for BMB/BMA to ensure that it worked well...

Counts are still near zero, but feeling ok, as my HGB is 6.7 and getting a RBC transfusion, PLTs are 22, WBC and ANC are still both less than <0.1...

All the Best to you and your Dad, and may God Bless us ALL!!!
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #11  
Old Tue Jul 22, 2014, 12:30 PM
Mseth Mseth is offline
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Hi Bella37,

Sorry to hear that the disease has progressed. It's a frightening and unpredictable disease. Even when things are going fine I am always worried about what lies ahead and the many bumps along the way.
Hope your Dad will respond well to the chemo.

Take care and all the best!!
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #12  
Old Wed Jul 23, 2014, 05:17 AM
Cheryl C Cheryl C is offline
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Whiz - I was as just wondering how you are going, and I'm so glad to see a message from you. You sound as though you are hanging in there with good courage as usual. All the best mate, and prayers for you.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #13  
Old Wed Jul 23, 2014, 01:23 PM
Whizbang Whizbang is offline
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Cheryl,

Feeling pretty good, no real pain attacks anymore, just waiting for BMB results to see next direction, planned August 31st second Transplant, non T-cell depleted same brother as donor...

Hope every thing is going well on your side...

All the Best, and may God Bless us ALL!!!
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #14  
Old Wed Jul 23, 2014, 04:49 PM
sbk007 sbk007 is offline
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Dave, Good to hear those attacks have subsided. Hope everything turns out great and everything goes as planned. I know I don't have to tell you this but Keep the faith and hang in there. you have a lot of people praying and rooting for you.
Take Care my friend.
Steve
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  #15  
Old Wed Jul 30, 2014, 04:38 AM
Bella37 Bella37 is offline
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Thanks everyone he is doing ok so far with his treatment, taking it day by day.

Good luck to you all
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