The use of Lipegfilgrastim for the prevention/easing of febrile neutropenia in breast cancer patient
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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.2
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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.2
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@Sunshine1 That sounds really painful! Poor you - not at all what you were expecting. I think it is good you listened to your body/made a decision you felt was right. I have been doing as told until chemo 5 and in consultation with my psych insisted on a week off chemo as the neutropenia hospitalisations left me psychologically and physically weak. I'm not advocating it for everyone, I just needed a break and it did help. I also discussed with the chemo onc not taking the Lipeg for chemo 5 seeing as I got neutropenia 4 days after. Something just felt wrong. Maybe I am having a reaction to it as I got all it's side effects ...including neutropenia. The onc said the Lipeg probably helped me get through the neutropenia and didn't want to discontinue as I queried. However my chemo nurse raised the query with the Professor and she stopped the Lipeg and reduced my chemo dose! This is after two registrars giving Lipeg the go ahead! So far I have only had mild joint pain, taking panadol around the clock. Monitoring my temp. If I do get it again, at least I've tried another option. Frankly I couldn't face the pain. I haven't had a bub like you but felt like my knees were shards of bone and I was crawling around on all fours into the hot bath when I could and and then the hot shower! Was glad to get to hospital. It is interesting to hear people talking about these side effects as I don't see them in lots of books. Rest on the weekend and lets hope we both get a smooth cycle ... yours was more than rough! Hugs xxx0
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@kezmusc ... same story as mine! In the past I would have pooh poohed my body telling me something but I am really thinking these gut feelings are based on something ... I don't know what, but I am certainly going to keep having more of a say in my treatment despite cross chemo oncs etc. I mean, if you look up febrile neutropenia, it can actually kill you (sorry to bring that up) but it made me realise that it's not something to stuff around with. A relative suggested I see how my 39 degree temp 'go' before going to hospital ... maybe give it an hour! I bring the lit. home for them to read and then all common sense flies out the window! They seem to think it's very self indulgent, ubering off to ED. Gotta laugh!!! Keep strong Kez xxx1
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@viking1 I am a private patient and no one has ever rung me after chemo. Three rounds (Docetaxol & Cyclophosphamide ) so far, side effects worse (but not diastrous) everytime. My breast care nurse rings once a month. She asked me last week if anyone rang from the hospital after chemotherapy and sounded surprised when I said no. It sounds like it's a thing that does occur.
I have found having chemo very isolating. I am bored, lonely and scared at home for much of the time. Cooped up and a bit abandoned. That's emotive I know but hey, it's an emotive time eh?1 -
@kmakm I've only had the one treatment so far, and I was contacted. Maybe, ring them instead to discuss what you're experiencing. I did ring the nurses a few days later to ask for something more for nausea. After talking through my symptoms, they spke to the doctor who prescribed something stronger, and then they had the script faxed to a pharmacy that was convenient for my husband to collect from.
I know what you mean about being isolated. I hate it. I want to be back at work but it's just not possible. Before we go hijacking another discussion, maybe pm me! I can't guarantee I'll always answer immediately as I'm not always at a computer but I'll see it eventually.2 -
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Hi @kmakm and @Sister, I just re read my old post and it was so long bactk that I felt like when women say childbirth was terrible at the time but they forgot the pain later down the track! I am now nearly finished with radiation .. 23 of 30 treatments completed and only getting a bit pink sunburny looking now. I have been using moogoo 3 x a day. After chemo, and the side effects, this is a walk in the park! But to go back to where you are, I also felt a great deal of isolation despite support from friends. At this late stage I am joining a breast cancer group therapy meeting on the third of each month next month for the first time. Mostly because I haven't processed a lot of what's happened until the near end! I had a big gap of about a month between chemo and radiation. It wasn't planned and I kept waiting to be told when I would start rad. So I didn't get to go anywhere or do something nice. I seemed to go into a depressive slump. Maybe because my previous purpose was to attend chemo etc and hospital appointments. Suddenly I was left with nothing. So I need to try and find a new purpose once the rad is over in the 8/3. I will still be having herceptin in my thigh every three weeks and heart tests, inc visits. But that ends in Sept. So I am glad you have work to go back to kmakm. How about you, Sister? I am not working so need to find something to do once the fatigue from rad wears off. I don't have a partner or kids so that's a bit isolating too. Here is a good place to find people to chat to. Are there any groups you could try that you have access to in your area? Worst thing with chemo is you may not feel up to social interaction. But I did access my gp, psychiatrist, and BCCWA counsellors at different stages and it helped. But am thinking it a good idea to check out the group therapy and give it a go. Mainly because I haven't had any real in depth conversation with another woman doing the same. And also, it seems like once you see light at the end of the tunnel, my own question is what now? I've got this far since last June, good, but what am I going to do now? This seems to be my main fear rather than recurrence. Keep in touch with your breast nurses and breast physios, they are gems...keep ringing if you have anything come up. The chemo nurses are good to talk to too. Stay in touch online when you're down ... there is always someone around! And if you are doing rad, it's much much better than chemo! It's tiring but fast and the days fly by. Hugs xxxx and best wishes. Let me how you are going and if you have any groups in your area you might consider trying out.0
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Thanks @viking1 Glad to hear you're coming to the end. I must admit my positivity has taken a hit with chemo and I'm not even up to the second treatment. It would help if I knew that I really needed it but there's no way of knowing (unless I don't do it and the cancer comes back). I'm not good at being "done to". No groups close to me that I know of and I don't think I'm ready for that. I can't go back to work as it will impact the income protection and I wouldn't be able to work full-time. I'm working on a mental and physical health plan, though. I'm just secretive by nature until I have a clear direction!1
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@viking1 No work to go back to at the moment I'm afraid. Not sure I'd be up to it anyway.
Your movement through your treatment is so interesting! It seems most of us hit all the same emotiinal marks but at such widely differing times. I lurked here without joining until I felt I had the strength a couple of weeks ago. Couldn't contemplatr group therapy though!
I am VERY nervous about the time when treatment ends and the team disappears. The what now. I'm going to need strstegies.1 -
@Sister it's great you have some ideas re mental and physical health. Really, I know a lot of women worry about hair loss, and have every right to their feelings, but once I was into chemo I felt for me I had to stay on top of things mentally and concentrate on my physical health. Your gastrointestinal tract from a to z can take a beating and lots of self care is required. I missed a week of chemo towards the end as I was so sick of being sick and couldn't face another hospital stay. The one week off didn't impress my chemo onc but did me the world of good and I got to the end. I asked at my psych's request if a week off would harm my recovery. Chemo inc said no research avail. to say yes or no. So there are options avail. if you feel you need to steer your own boat at any stage. We don't want to harm our treatment but we also need to know what options there are if you hit a wall and are getting worked up about it unnecessarily. Good you have income protection! @kmakm I know just what you mean about us all being so different with our experiences and time tines. On my first hospitalisation for 7 days I was scared of going home as I felt safe and had a new routine. The second time I just wanted to leave because I had a few incidents of errors being made that irked me. After chemo ended I was quite teary as I knew the staff and had 18 weeks of a routine and rapport going. Bit like Stokholm Syndrome! But know now that I was depressed due to the long gap between chemo and rad, I should now start planning what to do post radiation. Yes, I need strategies too! I have some health appointments like dentist, optician etc but they are one offs. Strategies for the 'what now?' are needed. Not sure how I will go in group therapy. To be perfectly honest, I do love this forum but sometimes don't come on. I know when I am up to being more social and when it's best for me to be quieter. I feel quite guilty about that as there is always someone here to listen or help you out, and sometimes I am not here to help as am dealing with some or other issue. Thankfully there are so many of us here that when I need a private sook, one of the angel's amongst us takes my place. I'm very grateful for the troopers out there who are here come hell or high water! xxx1
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@viking1 I was bawling my eyes out when I came on here tonight. Stopped crying pretty quickly. It's an amazing space filled with fantastically diverse & unbelievably supportive voices. Don't worry about the guilt from stepping away. I reckon everyone here understands a silence.0
