[pigduck]

Hi everyone, nice to hear from you.

Actually, my dad’s been out of the hospital for a week plus. After he took arcoxia, his fevers stopped straight away. He was discharged the next day.

The biopsy came back negative. It was just pus… but at least they took it out.

He came home to Malaysia during the weekend and walked around the house but couldn’t move much. He did drive on Sunday ‘cos it wasn’t painful. I think ‘cos we did stretching exercises (slight ones) where I just bent his legs a bit and moved them around and got them moving a bit… He went back to Singapore yesterday..

Not sure if it’s because he hasn’t had exercise… yeah, I checked out how petechiae looks like and my dad has little red spots but he also has big patchy ones… that kind of turn a purple-ish brown after a day or two… and remain. I guess it must be bleeding under the skin.

[pigduck]

Did any of you experience leg pain and bleeding under the skin during treatment? My dad seems to suffer from that quite a bit.

Not sure if it was because he was lying in bed at the hospital for so long that he lost muscles in his legs and now the bones are weak… but he can’t sleep some times and it’s really painful.

He’s eating arcoxia for his weak marrow which is a drug used to treat rheumatoid arthritis so if it was bone pain shouldn’t that drug relieve my father’s leg pains.. so I think it has something to do with muscles… the bleeding under the skin is a new addition… lots of bleeding spots all over.. big ones .. small ones… Petechiae?

[pigduck]

hi..

so far, my dad is still getting chills and fever… although today it seemed less.

The docs aren’t sure what the cause is. First they thought it was bacterial and/or fungal so they put him on wide spectrum drugs (Meronem and Vancomycin) and my dad still had spiking fevers.

They took out his central line thinking that could have been the cause but my dad still had fevers.

They did a CT scan and saw a white mass. So a biopsy was needed… it was so dangerous considering my father’s platelet levels are so low… they did find a lump and when they poked it it burst so they have taken that for testing. Results are not out yet but my dad still had fevers.

Doc then thought it could be that my dad’s marrow is weak. So to test this, they gave my dad meds for acute pain and rheumatoid arthritis (arcoxia). They said if the fevers stopped, it would be because of my father’s weak marrow.. and it stopped.

They also discovered his ferritin levels are at 17000 and that’s very high and apparently the doctors have never seen levels so high before.

Anyway, if anybody can give any pointers or advice please feel free to… it’s scary when the results are not conclusive and doc seems to be shooting around and putting a lot of undue stress on my father (with the biopsy and everything).

Platelets today are at 69 because he got 3 bags of platelets yesteday for the biopsy procedure. WBCs are at 3.3 which is expected after Vidaza.

[pigduck]

Hello…

So my dad’s fevers are quite high right now. About 39.7 Celsius. Dad’s been given ice.

Doctors don’t know what is infecting my father yet.

WBC – 6.6
Neutrophils are 76%

Platelets – 13

Has this happened to anyone before? High fevers that don’t seem to go down. My dad’s face is red. No appetite…

But the neutrophils are quite high. Isn’t that supposed to be a good thing?

[pigduck]

Does someone remember which thread it was where someone was talking about Vidaza and how we should keep a steady dosing pattern if not the Vidaza may stop working? Something to do with cycles and trying not to change it…

Can’t seem to find the thread…or maybe you can update me on your experiences?

[pigduck]

Well dad arrived at the hospital and developed a fever and chills there (good thing) so he’s been admitted to the hospital.

Temp reached 39 celsius/10.2.2 farenheit today.

Blood cultures have been taken.

Hmm… fevers are weird. They happen when you get transfusions, when you get treatment, when you get infection… it’s like.. ALL THE TIME! Hard to tell the fevers apart.

[pigduck]

Hi,

dad finished Vidaza last Wednesday (20 June).

Came back to Malaysia for the weekend.

Friday – got platelets and red blood transfusion. WBC 4.8 (neutrophils 45%)

Saturday – developed low grade fever.

Sunday – developed 38.3celsius/100.9 Farenheit fever.

Early Monday morning – developed 38.7celsius/101.6 Farenheit fever with chills.

Are these fevers expected? Did many of you experience these kind of fevers?

They are driving back to Singapore as I type. Hope to make it back for my dad’s appointment at 11am.

[pigduck]

Hello Janice

Like I said in my e-mail, my dad was also on voriconazole for the last few months. It helped keep my dad’s infections at bay but I wouldn’t was healing my dad as quick.

My dad’s infections flared up and got quite bad again after 1 round of Mylotarg. They first gave him Meronem which made it worse I think, then gave him Tazocin which again improved the situation slightly.

We transferred our dad to another hospital where they changed his medcations to

posaconazole
Maxipime
Bactrim

after taking tests to see what infections my dad had.

In Feb – he had Candida and staphyloccocus auerus. He may have had one other bacteria. I forget.

In May – he had e.coli and maybe others that couldn’t be detected as quickly.

They couldn’t do a lung biopsy (which would have been the best option) or an endoscopy due to my dad’s fragile state and low platelets.

I hope that helps somewhat.

After the switch, my dad’s lungs improved greatly and within 2 weeks my dad was pain-free. He still coughs but it’s not a heaving, like his lungs are going to explode kind of cough. It’s a lot shallower and like I said in my previous posts, the x-rays showed hos much his lung had cleared.

[pigduck]

Hello…

dad was discharged from hospital yesterday to continue his Vidaza treatment outpatient till Wednesday. I think that’s good news isn’t it?

Not sure what his doses are but I think it’s 100mg a day…

I think my dad was happy ‘cos he thought he’d need to be in the hospital for 7 days so he got to spend Father’s Day out of the hospital. Woopee!

[pigduck]

My father is starting on 5-azacitidine today.

His lungs look a lot better.

His platelets are a bit low @ 16.

Anything you can tell us to expect from 5-azacitidine?

[pigduck]

This happened to our family last year. My dad was first diagnosed with MDS in Sept 2005 and he still didn’t stop smoking.

He didn’t want to stop and then he was diagnosed with tuberculosis (Feb 2006) and he obviously had to stop then…

So after being transfusion independent for a couple of months and his TB was under control and the doctors were happy, he started smoking secretly again some time September/October 2006 and it devastated me and I know EXACTLY how you feel choijk.

When I was younger I thought smoking was cool (I was tiny then – 8 or so) but when I grew up I realised the harm it did and resented my father for smoking. He wouldn’t smoke in the house which was a rule for him but he’d go out and smoke constantly and who knew how much he smoked in the office.

Over the years we had tried to stop him.. bugging him about it or showing him pictures, articles, asking him about it but he was always so stubborn and after awhile he got really annoyed at us picking on his habit.

I always had this fear that it may cause my father much harm and when he got MDS and I read up about how benzene and smoking could be linked to MDS, I was so sad.

When my father didn’t stop initially I prayed then for something to affect my father so he’d stop smoking… and God, I believe, answered my prayers ‘cos my dad caught TB. Much worse and you’d think it’d change him.

Even when he started smoking again in Sept/Oct 2006 due to work stress or whatever excuse he gave… he never found it harmful. He used to sneak around us but we somehow picked up on it all the time. We asked him about it but he denied it.

Stress was also a problem for my father… and a lot of things were happening at his workplace from Sept-Dec 2006 it may have taken a toll but I guess it didn’t help with smoking either.

I would think he’d treat his lungs a little bit better after contracting TB and almost dying but obviously, he has short term memory.

So he started smoking again Sept/Oct 2006 and by mid-December 2006 – January 2007 his MDS had become worse and Thalidomide had stopped working… his counts had gone haywire and suddenly he had AML. So he stopped smoking after this.

Then, he went through induction and then caught bacterial and fungal pneumonia in his right lung (the same lung that had TB) and it almost killed my father twice.

You can’t discount smoking from all of this. But thank God, my father’s doing better and his left lung is in decent shape.

My fear is that he might have forgotten all the suffering he went through and start smoking again.

[pigduck]

Thank you guys for such positive feedback.

My father’s just headed back to Singapore to see what is the next step.

I have been having slight panic attacks the last few days and I am most comforted by your reply Chris. Thank you…

[pigduck]

Hello…

my dad’s lungs are doing much better. In fact, we compared xrays a couple of days ago and there’s been major improvement there… his lungs are a lot clearer.

Doc said he may start my father on 5-azacticidine (Vidaza?) next week if my father’s lungs permit.

They can’t do an endoscopy or a biopsy on the lungs as my father’s platelet counts are so low (below 15).

His wbcs are maintaining although he needs Neupogen shots every other day.

His HGB is also maintaining but he needs a bag or two every fortnight or so.

I have noted what people have said about Vidaza and how we shouldn’t try to ween off it. Will make a mental note about it… it sounds really dangerous considering what people have experienced so far.

I am not sure what to expect with Vidaza. Could some of you give some heads up? Are there any good questions we should ask our doc about? ‘Cos right now, I’m quite clueless..

[pigduck]

Yeah there seems to be nothing much on hypoplastic MDS or how to fix it.

[pigduck]

My dad’s MDS is classified as Hypoplastic MDS… any of you know anything about that?

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