Filgrastim

[Naive]

Hi, I've been having diagnostic tests to find the cause of my anaemia and low white cell count. A bone marrow biopsy was mentioned a while ago but I haven't had one. I have had tests which show that I have low iron, low vitamin A low Vitamin D and high ALP, amongst other slightly abnormal things.

I've had 3 blood transfusions, each three weeks apart. My white cells have been low but not critical.

Yesterday I was at a routine outpatient department to get the results of an abdominal scan when I had a seizure. I don't remember it. After I came round I found they had cut my clothes off and I had IVs in both arms. The doctor came in (I was in ED) and told me my neutrophils were very low and he rang my haematologist who ordered a Filgrastim injection. I came home last night but still feel very spacey. I had a house call for another blood test today and I'm seeing the haematologist tomorrow. I suspect I'll need another transfusion because I'm short of breath.

I was just wondering if there are any specific questions I should ask or any tests I need to ask about. This diagnostic process is taking a while now and I feel I need to be a bit more insistent that I get more information.

Thanks for any advice.

[Cheryl C]

I think you should ask why a bone marrow biopsy hasn't been requested for you.

[riccd2001]

A little advice. You should keep a record of treatment infusions.

When you receive a blood product there should be an identification sticker or tag securely attached to the "bag." Together with a precise individual identification number there will be blood type (e.g., O Positive), date the donation was made, date the donation expires, and actual volume in ml.

Most recommendations are if and when you have had about 20 "bags," you will need to discuss iron chelation treatment (e.g., Exjade) with your Doc to mitigate iron overload.

[Naive]

Thanks, I didn't get any answers but I did get a referral to another doctor. (cardiologist?) I did have another transfusion of 2 units and was given 10injections of Filgrastim to take home and inject myself one injection every 5 days.

I was also given a medi alert card that says that if I present to a hospital or doctor I need to be seen and assessed within 30 minutes.

I have an appointment to see a neurologist about the seizure in about 10 days time as well.

I'm feeling better but my left arm, left side of face and both legs feel tight and kind of numb and I'm having trouble walking because my balance is very bad. I've also developed quite bad joint pains from my fingers to my knees/hips back, neck, shoulders...basically anything that has a joint.

I also found out today that my platelets have dropped as well but not critical or anything.

No choice but to be patient I guess.

Broncos playing the Storm...must watch this game.

[Naive]

Okay, so I gave myself the Neupogen on Monday and now it's Thursday. Today I've developed headache, rash, abdominal cramps (like diarrhoea cramps) and a blood pressure of 83/40..... but no fever.

Is this normal with Neupogen?

[Neil Cuadra]

Originally Posted by Naive

Okay, so I gave myself the Neupogen on Monday and now it's Thursday. Today I've developed headache, rash, abdominal cramps (like diarrhoea cramps) and a blood pressure of 83/40..... but no fever.

Is this normal with Neupogen?

Yes. Unfortunately, headaches, rashes, and cramps are all side effects seen with Neuopgen. I'm not sure how it affects blood pressure.

Some descriptions of this drug's side effects say to tell your doctor promptly if you experience cramps or a rash, so I think that's worth a phone call to the doctor.

[Naive]

Thanks Neil, I've been admitted to hospital. Developed wheeze and cough...oh well.

[Naive]

Turns out I had lingular pneumonia. I didn't even know I had anything wrong and never got a fever. It was found incidentally when I was having my port placement checked by X-ray. Neuts were 0.3 but now I'm on Prednisone and Neupogen as well as the course of IV antibiotics and now oral antibiotics.

I've been told to rest but I'm hoping I start feeling better by next week. I don't think I've ever felt so tired.

[Naive]

I have a question...if I never knew I had pneumonia, how can I be sure it's gone when my antibiotics run out on Monday? It's not as if I have had a cough or fevers (except slight cough on one day). I've been taken off the prednisone but I'm still having Neupogen injections every 5 days. I just feel extremely tired. I don't have an appt to see the haematologist for another two weeks.

[Neil Cuadra]

Originally Posted by Naive

I have a question...if I never knew I had pneumonia, how can I be sure it's gone when my antibiotics run out on Monday? It's not as if I have had a cough or fevers (except slight cough on one day). I've been taken off the prednisone but I'm still having Neupogen injections every 5 days. I just feel extremely tired. I don't have an appt to see the haematologist for another two weeks.

I guess you won't be entirely sure that the pneumonia has complete cleared up until your appointment. If you experience new or worsening symptoms then you should definitely check with the doctor sooner.

[bailie]

Naive, have you had an echocardiogram to see about fluid around your heart? Your description of "extremely tired" fits the way I felt with the fluid. Mine showed up as pneumonia then to the fluid around my heart. I didn't have a fever, but was extremely tired. Mine went to a diagnosis of cardiac tamponade (very serious) before they got a handle on it. I had five echocardiograms during the month that they were closely monitoring me.

[Naive]

Thanks Neil and bailie. The physician who told me I had pneumonia did mention something about it obscuring part of the heart. I had a bad day yesterday. No fever but episodes of sweating, feeling faint...talk about forgetful...had my morning shower and forgot and had another one about 15 minutes later. I was so tired I didn't even bother making anything to eat, so I ended up having a muffin at about 7pm last night...that was all for the whole day.

I think I'll see my GP on Tuesday when my antibiotics finish just to see if I need a repeat scan or something.

I don't understand why it took a chest X-ray and CT scan to find the infection but there were no signs of it...the Doc had listened to my chest every day for the previous 4 days and didn't hear anything unusual.

Bailie, did the fluid on the heart cause any blood pressure or pulse rate problems? My BP was often in the 80s and my pulse in the low 40s when I was in hospital. The Doc just withheld my migraine tablet...he thought the tablet was making my observations worse.

[bailie]

My blood pressure and pulse were erratic during the time, mostly on the high side. Have they given you an echocardiogram to check for fluids around the heart? That turned out to be the sole reasons for my extreme tiredness.

[Naive]

No bailie, I only had the chest X-ray and when that showed "changes" the doc sent me for a chest CT. The chest CT also showed changes "suggestive of an infective process such as lingular pneumonia with blunting of the left heart margins".

I'll see my GP tomorrow and talk to him about it. I'm still feeling terribly tired and I keep getting comments from people I know that I look very unwell. I've noticed my hair is falling out....more every day. I've also lost a couple of kilograms in weight in the last couple of weeks.

I just feel something isn't right but can't put my finger on it.

[Naive]

I saw my GP yesterday. He said that I have to have my chest rescanned in 6 weeks to see if the "pneumonia" has gone. I put the pneumonia in inverted commas because he said that no one knows if it's a bacterial pneumonia, a fungal infection, chronic aspiration or a mass that needs biopsying.

He said he suspects I will need a bronchoscopy, a biopsy and a lavage. In the meantime if I get sick or develop a cough etc I have to go straight to the hospital.

He also commented that I had obviously lost weight.

That medi alert card that says I need to be seen and assessed within 30 minutes of presenting to a hospital might come in handy...I thought it was just a bit of a joke when it was given to me. I was told yesterday that I'm really quite sick....I better take more notice of the doctors advice and rest more and look after myself. It was a wake up call.