Forum Discussion
The use of Lipegfilgrastim for the prevention/easing of febrile neutropenia in breast cancer patient
I had febrile neutropenia after chemo 3 so as a preventative measure was given an injection of Lipeg. to take 24 hours after chemo 4. Unfortunately, I developed all the side effects of Lipeg. (the main 1 in 10 ones - not the ruptured spleen further down the page ones!) except for diarrhoea. One was a temp of 38.2 so off I went to hospital with another dose of neutropenia and pneumonia ... but no bugs discovered. I also developed the terrible bone pains in my legs and sacral areas. I would like to know if others have had a similar experience after Lipeg.? In hospital I asked the Dr if it had caused the neutropenia and he said no, if anything it had made the neutropenia less severe. I also asked if it would be better to skip the next Lipeg. dose after chemo 5 and he laughed. But I am actually wondering about this. It's taken a while to recover from all the flu like symptoms after taking the Lipeg. and I'm starting to feel human again. I've looked at some research but was just wondering if others have had probs with Lipeg. and what they have done about them. (I know to ask chemo onc but would like to hear other people's experiences.)
27 Replies
- Thanks Kez. That’s reassured me. I’m very much about following the medical model but every inch of my being told me not to have it again.
- I ended up in ED after that injection. Bone pain that bad I couldn't walk. Severe skin (i'm talking purple black) reaction WCC through the roof like 112. I just flat out refused to take it again. Just had to have a blood test a couple of days before the next round. Didn't have any problems after that.
- Dose after third Ac - I mean.
- Hi there,
I had neulasta after the second AC cycle with minimal side effects however the dose after the second AC was beyond horrific.
Onset of pelvic pain with pv bleeding and a syncope. The pain was like my induction labour. It subsided as quickly as it came but not before I had presented myself to the local ED in agony.
Bloods revealed that my wcc had gone up to 36 in that short time.
I elected not to have the next dose after my last AC 2 weeks ago. I have had weekly bloods since. Most recently today and I’m waiting to see what neuts are today. I have no fever and am just the usual bit tired.
X - @Payne ... that sounds great speaking to an onc before! I rang today and asked the chemo nurse if it was possible to see the head chemo onc who I saw twice and knows my history if I could see her next appointment ... the nurse said it was unlikely as luck of the draw but she would put in a request into the booking system and see if that helped. I agree I may need to be more assertive and as my counselor said, but not be aggressive ... lol. I said it is more likely I will cry as don't have energy for aggressive! She also said to be very firm and not go home without the assistance I need. So will try that! @Giovanna_BCNA thank you for your good wishes. With the help of the good women on this site I am getting to learn the ropes and this crisis in confidence and neutropenia related melt down has shown me how valuable it is to have people to talk to here who can offer that little bit of hope or encouragement or even just a hug when you feel the cancer is the driver's seat. xxx
- Hello @viking1,
Sorry to hear about the associated pain you are experiencing with the Lipeg injections.
Great idea to speak with the chemotherapy nurses, let them know that what you are currently doing to manage this pain is not helping. They can speak with oncology registrar or consultant with regards to some pain management for you. Hoping your next treatment goes well. - I am also public patient and before every chemo treatment had a quick consult with oncologist. They should also be able to fax a script to your pharmacy. Yes, if this not your case, talk to onco nurse and she should be able to organise it. Sounds like you might have to make a bit of noise ( as in jump up and down and some heartfelt sobs should do the trick)
- Hi @Payne and @Molly, no I didn't expect an offer of MJ lol ... maybe in Amsterdam! I'm public so maybe that's why I don't get a phonecall. I will do as you say and if can't organise a script on chemo day, then ask GP as it was enough pain to make me want to stop the injections and just see if I got neutropenia or not.. I know I have to have the Lipeg script filled on the day, this Monday, at the hospital dispensary, so maybe talking to chemo nurse will help.,and she can wrangle a Reg for me. Honestly, the chemo nurses seem very good. Very good you didn't get the pain Molly!
- @viking1 ALL of my docs (gp included) were more than happy to prescribe endone for bone pain. I only needed it the first neulasta shot then I got very little pain for the next 5. If you cant get in to see oncol get into your gp.
- The oncologist is not going to recommend you smoke a joint and I don't know if medicinal marijana? is available but when I told them the excruciating pain 3-4 days after injection they immediately prescribed oxycodone. Also ask them to prescribe an aperient (movicol/ coloxyl & senna or something) for constipation> You don't need a script for those but is good to have them write it up anyway. You should;t have to make a fuss, and is sad you have been left like this. Does the oncology nurse phone you few days after your treatment?
