Filgastim and bone pain

[TheFlyer]

Blood test shows wbc 1.9 anf Neutrophils 0.68 so prescribed 8 x injections of the above.Took it 1pm Fri by 2am I was in pain chest back hips and pelvis a pulsating throbbing pain that caught my breath.

Spoke toTriage and they said it can happen and suggested Paracetomol which I should of taken earlier, Sat was ok thanks to the paracetomol and back to normal today.

Have another 7 injections to go but it was far from pleasant, will have bloods weds and see what they say but been advised even if up I will need to take the remainder.

Jules

[AussieNeil Partner Administrator]

Good to know the paracetamol helped. Make certain that you take your paracetamol (Panadol, Tylenol, acetaminophen), at least 30 minutes before you inject the G-CSF drug Filgrastim to gain the protective effect.

There was an expectation that an antihistamine might help with G-CSF bone pain, but this clinical trial of loratidine (Claritin) didn't show a benefit.

pubmed.ncbi.nlm.nih.gov/268...

You should see the benefit of your G-CSF shots fairly quickly, but the frequency may need to be adjusted based on your blood test results. I needed them between daily and weekly until my bone marrow infiltration was sufficiently reduced by treatment for it to be able to make sufficient neutrophils. (There can also be the dampening effect on bone marrow production from treatment and treatment supportive drugs, e.g. prophylactic drugs to overcome.) Neutrophils should be our most common white blood cells and they sacrifice themselves killing bacteria (pus is mostly dead neutrophils). They don't live long, so our bone marrow is kept busy replacing them.

Neil

[TheFlyer in reply to AussieNeil]

Thanks Neil there was no leaflet or any advice on what to expect will take your advice. Hopefully it wont be so bad now definately worked I thought they may be doing overtime.All the best

Jules

[Poodle2]

I was on a lot of GCSF injections when I was in treatment (V+O). I suffered with bone pain, mainly my shoulders and knees. I always just dosed up on paracetamol. It helped. I was hospitalised once with neutropenic sepsis, which was very scary, so I personally wasn't that bothered about the pain as long as I knew that my neutrophils would go up and protect me from going through that again. It made me anxious before I figured out the bone pain was from the injections, I will admit to that. I kind of got used to it as there was no other option. Sorry you are going through this, so much we have to deal with. Stay strong and take paracetamol, hopefully it will take the edge of the pain. Definitely take your Filgrastim, you don't want to risk getting neutropenic sepsis or any other infection.

[ChillichilliBangBang]

Hi The flyer

I'm on these injections once a week. Have been for a little while, maybe a year. When I first started I used to have a pretty miserable day after the injection, but it seems to have settled down now, I don't have any noticable side effects at all. I can confirm that it's better than getting sepsis!

Stay strong.

M

[Floxxy]

I know what you are going through. I'm on Venetoclax and Rituximab as a second line treatment. My first line treatment was FCR. My neutrophils have always been very low so have Filgrastim injections. They do work but I get bad pelvic pain. Paracetamol only helps a bit. I find that a long hot water bottle wrapped round my pelvis really helps. Good luck to you. X

[TheFlyer]

look like if my bloods are ok I will still need to take the other injections but better than the alternative.

Will try the hot water bottle this Friday. Feel really good today was really tired just before they found out my WBC were low.

[Mijoed]

Apparently it is quite common to have hip/pelvis ache with filgrastim. I didn’t suffer too much, possibly because I was on the 0.5 ml dose twice a week. The haematologist said that it doubles to 1.0 ml over 80kg bodyweight and is more likely to cause discomfort.

[TheFlyer]

Definitely over 80kg but on 0.5 once a week.

[Jmiah717]

Mine was always right in the sternum which made me think I was having heart pains. It's no joke. Hope you get through and don't need it any longer.

[Bluesinthenight]

interesting that your team started the growth factor for your ANC of 680, grade 3 but not grade 4 neutropenia. Have you had serious bacterial infections recently? Unless there were other specific circumstances, we would not start G-CSF for grade 3 neutropenia in the U.S.

[TheFlyer in reply to Bluesinthenight]

I take it you mean 0.68 on the side of caution I guess for starting in the Uk

[Poodle2 in reply to Bluesinthenight]

They usually start them once below 0.5 but it's up to the doctor's discretion. The day unit would never start me on them if my count was over 0.5. My CLL consultant would do so as a precaution to save me the journey to A&E and being hospitalised as she knew it was quite stressful with leaving the kids and husband for a day/a couple of days and being away. She eventually put me on a maintenance dose (depending on my counts) - this varied from 1-3 filgrastims a week, reviewed monthly. I was very grateful as it gave me a peace of mind and saved me many journeys back to the hospital for more injections or A&E trips.

[TheFlyer in reply to Poodle2]

I think its being done as a precaution.

[AussieNeil Partner Administrator in reply to Bluesinthenight]

Depends on the circumstances. During treatment, specialists may decide to defer infusions, slow venetoclax ramp up, reduce oral dose of BTKi drugs or arrange temporary drug holidays to ensure a safe neutrophil count has a reasonable chance of being maintained. The recommended guidelines with respect to managing neutropenia and other cytopenias vary by drug, but CLL specialists have the expertise and experience to go outside the recommended guidelines, such as prescribing G-CSF shots rather than oral drug holidays or deferring infusions.

My specialists liked to see my neutrophil count ideally above 1.5 during treatment. I averaged a neutrophil count of 1.0 for my 11 years in watch and wait.

Neil