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MDS Myelodysplastic syndromes

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Old Thu Jun 9, 2011, 07:07 PM
wilmasdaughter wilmasdaughter is offline
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Question Help! Am I over-reacting?

Hi all. My 88 year old mother was just dx with MDS (refractory cytopenia; IPSS Int 1) about 1 mo. ago. Up to now, she has been feeling fine (she's very independent) so no treatment. I'm her primary caretaker. I called her today and she said she caught a terrible cold and cough. The hematologist told us that she needed to call him with ANY infection or illness, but she wasn't thinking of a cold/cough as an "illness." I will call hematologist first thing tomorrow morning, but in the meantime, I told her to call me if she started feeling worse or ran a fever and we'd go to the ER. Question - am I over-reacting? I haven't gone through this before, so didn't know if I should back off a bit. Do I need to take her to ER NOW? Thanks![/font]
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Jil, dtr of Wilma age 90; dx May 2011; MDS refractory cytopenia IPSS Int 1; platelets 35, WBC 3.5 & RBC 3.06
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Old Thu Jun 9, 2011, 08:09 PM
Chirley Chirley is offline
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Hi,

I was just wondering if your mothers white cells are affected. If they are low it's more of a worry. Also, sometimes the body just doesn't have the resources to develop fever.

I had very low whites and was told that if I ran a fever of 38 or more OR I felt unwell, that I needed to go to the ER immediately.

I got a fever one night and thought I'd see the doctor in the morning so I left it, big mistake. It took many, many weeks of IV antibiotics to reduce the infection.

What I'm trying to say is, it's quite possibly nothing to worry about but you shouldn't take the risk. Better to feel silly that you over reacted than something bad happened because you didn't take it seriously.

Probably not what you wanted to hear and I hope I'm not being overly dramatic but I don't think it's worth taking chances.

Regards
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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Old Thu Jun 9, 2011, 08:33 PM
mausmish mausmish is offline
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i tend to agree with Chirley. Until you become more familiar with her condition and how it affects her, it is probably best to err on the side of caution. I recommend calling her doctor's emergency night number if they have one and ask what to do. Right after I was diagnosed, I had a small nosebleed which went for about 20 minutes. It was barely dripping so my first thought was to let it go but my husband had me call my doctor even though it was long past office hours. They told me to go to the ER. In retrospect it probably would have been okay if I hadn't but the doctor empasized you really cannot guess which way it will go. My platelets were at 19 at the time. Your mother's doctor will know her blood counts and will be best able to advise you. With time, you'll probably become a better judge yourself when to wait and when to act.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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Old Fri Jun 10, 2011, 07:50 AM
edithr edithr is offline
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I would like to add that if she has low platelets then absolutely never take aspirin! And if she has a fever, don't take Motrin or Advil or any fever reducing medicines, they will only mask the fever and you need to see whats going on. Eric's doc said a fever is defined as 100.4 or up lasting more than an hour.

At 88, I would err on the side of caution.
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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Old Fri Jun 10, 2011, 10:51 AM
wilmasdaughter wilmasdaughter is offline
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Original poster - response

Thanks all. I do have her blood counts from last visit in May. WBC - 3.41; RBC - 3.22; Platelets - 45. All 3 are below normal. I did call her hematologist this morning; they said to just continue to monitor unless she ran a fever or was coughing up anything (which she isn't).
BTW - This board is a LIFESAVER for me because this is all so new to us. So glad I 'found' it.
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Jil, dtr of Wilma age 90; dx May 2011; MDS refractory cytopenia IPSS Int 1; platelets 35, WBC 3.5 & RBC 3.06
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Old Fri Jun 10, 2011, 10:59 AM
wilmasdaughter wilmasdaughter is offline
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Second response - orig poster

Dr office just called me again. They ordered a script for Levaquin for her to start taking today. But if she runs a fever over the weekend, she needs to go to ER. If she isn't better by Monday, she needs to go in and see the hematologist. We have a vacation planned in 2 weeks so hope she gets better! She is really anticipating this - we are meeting up with one of my brothers and two of my sisters and all their families - for some of them, it may be the last time they will get to see her. So I HOPE AND PRAY that she gets better or there won't be any traveling for us! Thanks again for all your comments - you are all a blessing to me.
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Jil, dtr of Wilma age 90; dx May 2011; MDS refractory cytopenia IPSS Int 1; platelets 35, WBC 3.5 & RBC 3.06
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