Extra Chromosome 8?

[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..

[cthomas555]

Saw my hem/onc this a.m. about the Exjade and chronic diarrhea. He reiterated that the Trisomy 8 generally have a poor prognosis and transform into leukemia rather soon and here I am still bumping around ten year later.

I asked if the RARS make it better. He says not it generally makes it worse.

I remember when this, my 3rd hem/onc, said this to me over 8 years ago that he gave me less than 2 years, I said to myself, HEY, you’re not going to tell me when I’m going to die!

Chris

[chuckk333]

Chris.

Good for you. I was dx’d over a year ago, and I still am doing fine. Counts have stayed same or slightly better. Dr. and UCLA says he would not recommend any treatment as long as the counts say OK in spite of my chomosome complexity.

[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]

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?

[Russ P.]

Pigduck,
The 5-azacitidine (Vidaza) will lower his counts but should recover in a couple of weeks. I think there is hope in using a hypomethylating drug like vidaza or dacogen along with a HDAC inhibitor. There seems to be more trials going this way.
Best of luck,
Russ

[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!

[choijk]

Indeed it is a happy father’s day! Happy father’s day to pigduck’s father and also to everyone on this forum!!!

[JaniceR]

Pigduck:
What did your father take to clear up the fungal infection in his lungs? My father’s on v-fend and he’s still in alot of pain. How long did it take for the fungus to clear up?

[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]

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.

[JaniceR]

Hi:
My Dad always gets fevers after receiving red blood. But we always tell the doctor about it and he gets checked that he doesn’t have pneumonia or some other infection, just in case THAT is what is causing the fever. They usually only last about 2 days, and after taking tylenol the fever goes away. He usually gets a fever at night after getting red blood. HOpe that helps.
Janice

[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.

[Frankie]

Whenever I received blood, I was given 2 Tylenol and a Benadryl right before each unit of blood.

Frankie

[maueenh]

My father developed a fever and was admitted to the hospital last Friday (3 weeks after he began Dacogen). They are treating an infection and we hope he will be better soon.

Dad was on Vidaza for 10 months with a good response and we were hoping for a response from Dacogen. Dad went almost a year without a blood transfusion but shortly after he went from 4 week cycles to 5 weeks cycles, it stopped working. It may be coincidental but who knows.

The first month my father was on Vidaza he needed several transfusions and his counts went so low but within a month he was holding his counts close to the low end of normal.

I hope Vidaza helps your father.

Maureen

[Author]

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