New Symptoms

[Sue&Dave]

My husband has not started treatment yet - very likely it will start soon. But in the past 3-4 weeks he has had the following symptoms: intermittent fever, headaches and extreme fatigue. His counts, while low, have remained in the same range since October, so we are not attributing it to a plummet in his counts. He has had a complete work up and the local hemo doesn't have an answer. The scary part of this is over the summer those very same symptoms appeared prior to him being diagnosed with a brain empyema (infection) post operative for 2 subdural hematomas. We have neuro involved and CT and MRI are negative (at this point). We know that his immune system doesn't respond like others and he could have a recurring brain infection that just hasn't presented itself yet. He was relatively fine up until just before Christmas when he hit a wall. Basically walking 2-4 miles a day, puttering around the house, etc. Then the fatigue and headaches started. Headaches have subsided somewhat, but chills, sweats and intermittent fever have taken over. So, has anyone experienced similar symptoms without being on treatment? I am really hoping this is an MDS issue instead of his brain again.

[Bcana69]

Hey there,

My platelet counts dropped from 140's to 120's over the summer and last week dropped to 90 (Bronchitis) my lymphocytes were below 20 as well and even though I dragged myself to work I felt like crap!! I would say with low counts not unusual AT All to have 'flu like symptoms'. Any new meds at all?? Are they treating the MDS or just monitoring it? Any recent BMB?

[Sue&Dave]

We put him through the ringer with tests in the past couple days. MRI and CT show no brain infection or bleed. Echo of his heart was good. Slightly enlarged lymph nodes in his chest, but not alarmingly so. Has extreme fatigue and shortness of breath. Had his first RBC transfusion on Tuesday night (HGB was 7.9) and both that night and Wednesday he had night sweats and a fever up to 103 last night, resolved immediately with Tylenol. We had to cancel our trip to his Center of Excellence because he was so weak. Local doc wants to do a BMB tomorrow to ensure he hasn't transformed to AML. Two weeks ago he only had 1 circulating blast, I find it hard to believe it would transform that quickly. Sigh.

[Sue&Dave]

Good news / bad news (isn't that frequently the case with this disease?). Because our COE was a 6+ hour trip for us and he was feeling so bad we transitioned to another center closer to us (2+ hour drive). I honestly think this is where our path has been leading us the whole time! We met with the doc last week to get the results of his biopsy and were surprised that his blast count had not gone up in an entire year - even though his symptoms have become alarmingly worse. When talking with the doc she just kept staring at him saying, you don't look good - and given his fevers, shortness of breath and counts - was concerned about an infection. She kindly asked if he would consider getting admitted to the hospital to rule out an infection (even though we went thru those tests at his local oncologist). Given that infection is a leading killer with this disease he agreed. He spent 5 days in the hospital with all sorts of tests. He would spike a fever in late afternoon, at which time they would culture his blood and start him on IV antibiotics (I told the nurses he's like a colicky baby, afternoons are the worse for him!) This went on for 4 of the 5 days and then they agreed that his fever and fatigue are symptoms of his disease. Fast forward to today. He is on Day 3 of his first round of Vidaza with little side effects (right now), except for that pesky fever about 10 hours after treatment. We understand that a transplant is in the near future as he is considered high risk under the new scoring system. Alternatively his doc said he could be one of those exceedingly rare cases that Vidaza works perfectly and he remains transfusion independent for a couple of years. So starts the battle!

[bailie]

We are all hoping for the good news to prevail. As you might remember, the Vidaza worked for me and I never needed a transfusion. I still feel strongly that if the Vidaza works to not wait until the Vidaza stops working before having the transplant. People have gone "downhill" rapidly by waiting too long.

I start my 24th cycle of Vidaza next Monday. I have had the Vidaza on three different occasions.

[Cheryl C]

Great that you've found a treatment center where you can be assured they are doing their best for Dave. All the best with the new regime - I hope it achieves the desired result.

[Catl]

Hello Sue, my dad also started his Vidaza on Monday and so far so good. Is he on the 7 day schedule or 5+2+2 schedule. My dad is on the 5+2+2 which I am disappointed about because it seems like 7 days straight is the gold standard.

Interestingly, he has also had a couple of spikes of fever that lasted an hour or so and then goes away. It's scary because the cancer center told us to bring him to emergency if the fever is over 38oC for an hour or goes over 38.3oC. He felt fine so we waited a little and it came down. All the best to both of you!

[Sue&Dave]

Hi Catl - yes the fever thing is a little scary. We had the 'fortune' to have him hospitalized for 5 days prior due to a fever, so they knew it wasn't an infection. I have narrowed it down to a 2 hour (ish) fever about 10 hours after his treatment. And yes, the first night I called the hospital (per their instructions) and after some back and forth they agreed no need to bring him in. The nurse told us that is a very common side effect, especially during the first course of treatment. I told her I was surprised no one told us that, and she said that's what all the patients that call in w/the same symptoms say. I guess they don't want anyone to become complacent about fevers. Dave is on the 7 day schedule since our local oncologist is open 7 days for treatments - we are lucky in that regard. I have also noticed that he has 1 good day, then a bad day, then a good day. Today is starting out to be a 'good' day, but of course that can change! Best of luck to your dad!

[Catl]

Thanks for your reply! Yes I can understand why they don't emphasize the fever as a side effect. Since my dad's fever went away fairly quickly I'm confident that it was treatment related. He hasn't had any fever for the past two days and he's feeling fine. The wait to find out if through treatment works will be brutal. Thanks again, Catl

[Ugo]

I have had cytopeniae since 2002. Usually my counts are abnormal in WBC, RBC, Platelts, and my Hemoglobin.
I have had BMB at both Johns Hopkins and Moffitt abd even though they were not of great concern they dud reflect that I had MDS, although consiered low risk.
I am monitored regukarly and the counts have been within a range, never so severe that I needed to begin treatment ,yet never within the normal counts. My worst symptoms are fatigue and poor enurance,

My last visit in January my WBC had taken a nosedive and was of concern to my hemo. I will be returning to be checked out again in two weeks an if still in a downward trend may need to start treatment. What treatment exacty I do not know but trust the hemo explicitly,

For what it is worth to Bocana69 my Platekat count has ranged from 90 to th3 170;s since 2002. I am definitely not complaining and feel very fortunate that I have not had to endure tratment up to now. I notice that you are in Boston where there are fantastic choivces. Dana Farber comes to mind as an excellent choice. Best wishes and good luck.

[Neil Cuadra]

Ugo,

Did they test you for an active viral infection? That could explain your WBC drop. If that's the case and you get over the infection, your counts may return to their normal (low but livable) range.

Nobody is fortunate to have MDS, but you are right to feel fortunate that you've been stable for so long. Your MDS never seems to advance, and that's great.