MDS and fever

[cecfire]

My brother in law was diagnosed with MDS about 4 weeks ago. For the last 13 days, he has been running a high temperature from 102 - 103+ with brief periods recently of being normal. He has been hospitalized for the last 9 days and has been receiving IV antibiotics even though they cannot determine the source of his infection. His platelets even with frequent transfusions remain under 10,000 which could in part be due to the temperature. In the last few days, his liver enzymes have also been elevated and he is jaundiced. They started him on steroids yesterday, but his temperature rose again to 103 and 104 after being pretty low for the last couple of days. He is classified as RAEB 1.5 and his last white count was around 13,000. Has anyone had anything similar and was the cause of the infection determined?

[S001]

Originally Posted by cecfire

My brother in law was diagnosed with MDS about 4 weeks ago. For the last 13 days, he has been running a high temperature from 102 - 103+ with brief periods recently of being normal. He has been hospitalized for the last 9 days and has been receiving IV antibiotics even though they cannot determine the source of his infection. His platelets even with frequent transfusions remain under 10,000 which could in part be due to the temperature. In the last few days, his liver enzymes have also been elevated and he is jaundiced. They started him on steroids yesterday, but his temperature rose again to 103 and 104 after being pretty low for the last couple of days. He is classified as RAEB 1.5 and his last white count was around 13,000. Has anyone had anything similar and was the cause of the infection determined?

Yes, my dad went through roughly the same chain of events when he was diagnosed with MDS (RAEB-1) in May this year. Initially he just had a loss of appetite, dry cough and generally feeling sleepy and fatigued after routine physical activities.

Once he had the bone marrow biopsy though, he caught an infection from somewhere and this infection caused a ton of problems. Dad had persistent high grade fever for 3-4 weeks. He was constantly on IV antibiotics, given after every 6-8 hours.

Even after running a battery of tests, nothing could be pinpointed. By this time, my dad has completely lost his appetite and his solid food intake was so low. This, alongwith the constant antibiotics being fed into his system, caused his stomach lining to erode, which caused further loss of appetite and then caused his abdomen to swell up with alot of gas, making it difficult for him to breathe with his lungs being constricted for space.

Long story cut short, once the gas was cleared out, and after finding no conclusive evidence of infection, the doctors went in for a 'blind treatment' of antibiotics for the persistent fever.

It was a 5 day course and the fever simply vanished. It was always a 'fever of unknown origin', causing erratic Hb, WBC and platelet counts. My dad did have platelet transfusions too and the lowest his platelets ever went down was 19K.

Thankfully, eversince, there hasn't been any such repeat episode. I really do hope the doctors can pinpoint the cause of infection soon and help your brother in law recuperate from the bouts of fever.

Take care!

[cecfire]

Thanks so much for your reply. It gives us hope.

[Amy D]

My husband also went through several weeks of undiagnosed fevers. He was hospitalized 3 times and saw everyone from a cardiologist to an infectious disease doctor. They could never find the cause. I know it can be very frustrating when no one can give you an answer. I am happy to say that since his last hospitalization about 6 weeks ago he has had no fever! He is actually doing pretty well right now. My thoughts and prayers go out to you and your family.

[KMO]

My wonderful sister is cecfire, she is my strength through this nightmare. My husband, her brother-in-law,l was diagnoised with MDS on 10/15/2010, 8 days before our daughters wedding. We were told he was In subgroup REAB-1 intermediate-high with blasts of 7-9%. His platelets were low, 10 and under ad he had a platelet transfusion twice before the wedding. His red and white counts are also low and his has had 3 red blood transfusions since his diagnoisis. After the wedding we found a doctor in NYC that specializes in MDS and we his was to begin a clinical trial of vidasa and vironstat a week ago today. However, after a second bmb on 11/9 which moved him into RAEB-2 with blasts now at 18% he developed a fever and has been hospitalized since 11/13. They have run a million of tests and cannot find the source of the infection. He also is experiencing liver issues with very high enzymes, increasing every day. He has had a platelet transfusions every day but one since we have seen here. Platelets can't seem to get over 10,000. In addition the fever remains although over the past 5 days he gets a few hours where he is normal.
I am so frustrated because we have not begun any treatment and I'm so afraid he is progressing with the disease and we are waisting precious time trying to find this needle in the haystack. My gut keeps telling me this has to be MDS and let's get going but I'm not the medical doctors. In the meantime my husband is suffering and he is miserable and it breaks my heart.
Does anyone have any advise or been through this?

[launch]

Hi There,
My husband, Ron was diagnosed (dx) with MDS back in Feb'09. Prior to dx, he had nightly fevers and night sweats. Once dx with MDS, if a fever develops, they have to admit inpatient and hunt the source of infection. Sometimes, the search produces absolutely nothing and you learn that, MDS itself can cause fevers and night sweats.

Now, after getting the condition under control, with a clinical trial of low-dose Vidaza 10-Days each month, my husband went 13 cycles without fevers. But, unfortunately, the medicine stopped working for Ron and then, he developed AML. He had been dx with low risk MDS and was the least likely to transition to AML. His fevers during the transition from MDS to AML were 103F nightly accommpanied by sweats... it was terrible.

Ron went through induction therapy and his AML has been put into remission. We thank God for his progress. A bone marrow biopsy will show how he's doing, post induction and post 1 cycle of Consolidation Chemo therapy...

Good luck to you and your loved one...
Hugs, Cindy

[SheWhoKnits]

Hi,

I went through a few years of low grade fever and night sweats, just once in a while at first, then finally nightly about a year ago. As my fever stayed under 101.5 my GP wasn't too concerned. Most likely the cause was just pre-menopausal symptoms. Turns out that wasn't it at all. So in August when I was dx with MDS I was told by a hematologist that MDS causes these things. I take tylenol and usually keep it down in the 99's. Night sweats are drenching to the point of changing sheets and jamies in the middle of the night once or twice. Finally started putting towels over the wet sheets so as to not wake up my husband but still changing night gowns once or twice. Sometimes I'd just dispense with the clothing and lay on top of the sheets with the ceiling fan on. Still have sweats and fever but I feel better.

Since starting Procrit shots two months ago, the sweats are even more prevalent than before which is very frustrating. Fever still staying under 101 though. However, the Procrit has not relieve tx dependence and only after being bumped up to the max dose last month has a slow down in the drop of my hemoglobin happened. That slow down will not get rid of the tx dependence so we are going to switch to Vidaza in January. Wanted to get past the holiday's first. I'm curious to find out if the sweats and fever will continue with the Vidaza?

[cheri]

I have MDS and not the night sweat issue, that I did have going thru menopause....the drench thru a nightie kind. Gross! Menopause lasted YEARS for me! I'm now 53...Occasionally I have mild night sweating, but I sleep alone and think it's because at a certain point at night, my body has finally heated up the bed, the heat just came on, and I'm overdressed! I'm on rd 4 of Vidaza and nothing sweaty noted. I did, however, run a low grade temp last month (99's) ...the past few weeks, I am below normal.
I think Vidaza definitely messes with your temperature...and I've had a few fevers too...Good luck and maybe a terry cloth nightgown is in order!

[Hopeful]

Hi SheWhoKnits,

I was originally diagnosed with MDS RCMD, but that was later changed to an AA/MDS overlap diagnosis. When my disease was active, I had continual low grade fevers and the nightly drenching sweats. Once my marrow started recovering after ATG, the sweats and fever disappeared. I will still get them occasionally when fighting a virus.

Does your MDS RCMD include chromosone abnormalities or just dysplasia? I ask because of your young age. If you have no chromosone abnormalities, have you been considered for immune suppressive therapy?

Best wishes!

[SheWhoKnits]

Instead of Vidaza I received dacogen as my hem/onc decided it works faster if anything is going to work at all. Four cycles later and I'm worse off than before so we discontinued it. I didn't have any abnormalities show up in BMBs, just dysplasia. Since being on the dacogen the night sweats have been greatly reduced, just a couple times a month! However, the fevers are persistent almost nightly. They do seem worse as my hemo drops. I figure it's caused by my body working overtime to try and crank out blood, but who knows? I'm still getting weekly procrit shots but they haven't rendered any visible improvements. My transfusion dependence has gone from once every 4 weeks to once every 2 weeks or even a few days less. I am going to KC tomorrow for a new BMB to see where things are. Until I qualify for a SCT I will be on supportive care (and I guess procrit).

[Julianna]

Thought this may be the place to post. I'm in the middle of horrid fevers again but glad there is a rest period in between. I've read many of the stories here & each is so different. I've had bad fevers a couple of times a year. This is the first time I've tried staying at home. With my hydrolyte (to stay hydrated) and visits to go for blood test etc. I'm doing ok considering. But exhausted. Sure my Hb is low.

Just wondering if there is actual proof that fevers of unknown origin are a symptom of MDS?

Learning that these fevers are something I may need to live with. I'm trying hard! It does intrude on my life. All I can do is just ride it out once more.

[Cheryl C]

As far as I know fevers are due to low immunity, ie low white cell/neut counts because the body is vulnerable to infections. These are often of unknown origin. Of course low WCC/neut counts are often associated with MDS.

[Julianna]

Yes indeed. However, those counts never seem to be low for me. Maybe they just aren't working right. Hmmm. Oh well, I'm just very thankful that I awoke without fever this morning! Yay, I did manage to stay at home 😊

[Cheryl C]

The more I read, the more I realise that MDS, AA and other marrow diseases are just so highly individualised!