Extra Chromosome 8?
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June 26, 2007 at 4:15 am #18260pigduckMember
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?
June 27, 2007 at 8:01 am #18261pigduckMemberHello…
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?
June 27, 2007 at 1:36 pm #18262Russ P.MemberPigduck, did you do a search of postings for “vidaza”? A prayer goes out for your dad.
God Bless,
RussJune 27, 2007 at 8:44 pm #18263jaxemMemberpigduck
sorry to hear about your dad’s suffering. that’s a pretty high temp to be running (103.5 F). I guess tylenol has no effect? vidaza is normally given by Sub-Q injection once/day for 5 days every 4 weeks for 4 rounds. the concentration depends upon the person’s body area. for more info, go to the drug mfr at http://www.pharma.com.June 29, 2007 at 5:40 pm #18264pigduckMemberhi..
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.
July 9, 2007 at 4:07 am #18265pigduckMemberDid 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?
July 9, 2007 at 1:40 pm #18266shirlsgirlMemberHi Pigduck,
Has your Dad’s fever improved? Have you heard anything back yet from the biopsy? Your poor Dad. Is he able to walk at all in the hospital?
Take care,
jody
July 9, 2007 at 7:05 pm #18267Russ P.MemberPigduck,
Blessings and prayers to you and your father.
RussJuly 10, 2007 at 4:21 am #18268choijkMemberPig Duck,
I am so sorry to hear that. If you google the term “petechiae” you will be able to see an image if it is that or not.As for my father, every time he gets his CBCs done or when he gets a transfusion, there is purple spots under his skin. It sort of looks like a pen where the ink bled on a white sheet of paper. I asked our hema about it and he said that it comes with old age and that it should go away in about a week or two.
I dont know if thats the situation for your dad or if its petechiae.
Please keep us updated.
July 10, 2007 at 3:48 pm #18269pigduckMemberHi 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.
July 27, 2007 at 6:10 pm #18270pigduckMemberhi everyone, just an update.
My father’s just finished his 2nd round of 5-azacitidine (Vidaza). His counts have dropped quickly this time. Yesterday his wbc was 6, his platelets 11 and his HGB 9.5.
He’s home for the weekend and still complains of leg pains. It gets very bad some times that he gets a mild fever and cannot walk much.
He went to work today to chat a bit and get his mind off blood counts.
August 16, 2007 at 11:33 am #18271pigduckMemberI’m going to ask the question here first before I start a new topic…
So my father’s counts are still about the same. His platelets are around 20…WBC are ok with neupogen shots and needs HGB transfusions every week or 2.
His blood tests show a blast count hovering at 15%.
They intend to do a bone marrow test next week.
My question is
Are 2 cycles of Vidaza enough to see improvement in my condition or would more rounds be needed?
The doctor did suggest changing to ara-C as the next course of action…depending on the bone marrow test to see if my father is producing good cells.
From what I read, some people need about 5 cycles of Vidaza to see improvement but does this mean for the first 2 cycles there are no signs of improvement?
August 16, 2007 at 5:38 pm #18272maueenhParticipantMy father started showing signs of improvement shortly after two cycles and was in the normal range for all counts after three cycles. I know that for many it takes 3-4 cycles.
Maureen
August 17, 2007 at 4:14 am #18273pigduckMemberhey maueenh,
thanks for that… that’s what I thought but did your father show any signs of improvement from the first shot?
August 17, 2007 at 4:57 pm #18274maueenhParticipantHis counts starting coming up just as he was beginning the second round. His platelets dropped after two weeks (from the beginning of the first round)then started to rebound and were triple by the end of the fourth week.
His counts always fell a couple of weeks after he started each round but were still improving from the baseline.
I believe ara C is a much stronger chemo than Vidaza. My father tolerated Vidaza very well but as we all know from reading posts on this forum everyone is so different. Take care.
Maureen
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