Hi everyone
Just looking for some advice. I have had 4 out of 6 cycles of FEC. The last cycle was delayed for 5 days due to low neutrophils and my 5th cycle should have been last Wednesday 17th July but neutrophils again low (0.7) so treatment again delayed, this time by 8 days so should be going ahead next Thurs. On Friday I spiked a temp of 38.3 so ended up in hospital and had IV antibiotics. The strange thing is when bloods were taken on Friday, my neutrophils were 2.8 and white cells over 4! I came home yesterday and generally don’t feel too bad but am very frustrated at delays in chemo, though I understand why. I have asked my Onc about Neulasta but he refuses to prescribe it. Has anyone else had any similiar experiences with any of this. Just looking for reassurance and advice. Thanks everyone.
Bumping into latest posts for Mac123
Hi Mac,
Sorry you have had to endure these delays. It must be frustrating, and worrying at the same time.
I was neutropenic on my very first cycle. My temperature spiked to 38 and I ended up in hospital on IV antibiotics for 3 nights. My Neuts were down to 0.1 when I was admitted. I was lucky in that they climbed back up to a normal level before my next cycle was due so I had no delays.
However, my Oncologist then prescribed Neulasta for me. He told me he does not prescribe it automatically at the outset because not everybody needs it and it has nasty side effects of its own, but if a patient gets neutropenic he prescribes it for all suibsequent cycles. A sort of suck it and see protocol.
I am about to have my 6th and last cycle this week, having had the Neulasta since cycle 2. So far I haven’t been Neutropenic again, and am lucky I haven’t had any side effects from the Neulasta either. Touching wood here - I still have one cycle to go!
If I were you I would ask your Oncologist again. Surely it is better than a hospital stay, and in my case has removed a lot of my anxieties about Neutropenia.
xxx
Hi Mac, my story is much the same as Lola’s. Neutrophils only just got up 1.5 after my first FEC. Ended up in hospital after No2 with temp of 39.2 and since then have had Filgrastim from day 5 to day 10. Even with these neutrophils rarely above 3. Seems odd though that they won’t prescribe it for you as it has happened twice to you. Although expensive it is much cheaper than a hospital stay to put it right. Xx
hi i had a delayed chemo 5 due to low neutrophils and had neulasta for chemo 5 and 6. yes there are some side effects (aching hips ) but better than a hospital stay. ask again.
QD x
Hi,
Similar story here too. On my 4th session I ended up in hospital with 38.7c temp and 0 neutrophils. Even my onco couldn’t believe it as I had three of the filgastrim injections beforehand. I had them for every cycle, even the first. I was in hospital for 4 days during which time my white cells went from zero to 1.5, then a big jump up to 11. My next cycle went ahead as planned though.
Poemsgalore xx
Your oncologist needs hitting over the head with a blunt instrument.
I got an infection after FEC3, althuogh not admitted to hopsital, thankfully, just given iV antibiotics in A & E. FEC4 was then delayed because neutrophils too low.
As soon as infection came into the equation they prescribed me Neulasta each cycle to protect against further infection make sure there was no delay to FEC5 and 6.
As others have pointed out, it’s expensive but massively cheaper than repeated hopsital admissions, not to mention the cost ot the hospital of the wrongful death suit if a chemo related infection carries you off and you have been denied Neulasta.
If I were you I would make a HUGE stink about it, and if your oncologist still refuses , COMPLAIN very loudly via every possible avenue.
Good luck…
Hi guys,
I am due cycle 2 on Wednesday and just wanted to say that I got Neulasta 48 hours after 1st cycle and I am due to get it 48 hours after this cycle. It would seem that my Oncology Unit administer this as a matter of course so I should be lucky. As others have said I would ask again and see if that makes any difference. I have to say mind the “pain” from it was horrendous, it was my shoulders, neck and head that hurt but I think that was because it was unexpected; this time around I am topping up on lots of pain meds to get a head start.
Hope you get it Mac and get back on track with your dates, I am scared of becoming poorly with neutropena so knowing I am getting this has put my mind at rest for a bit anyways.
Karen
x
Thanks everyone for all your replies. Chemo due this Thursday so I will ask again about Neulasta.
Best wishes to all of you Mac
Hi - I had neulasta after all 4 of my EC - didn’t have any side effects at all so don’t worry about side effects until they happen! Conversely I am on weekly paclitaxol and neutrophils are low but not getting any GSF injections to boost neutrophils?? - cant quite understand it. Need to ask ONC again! Good Luck Ciccia x
Hi
I was neutrophenic every time throughout my 6 FEC. Here in N Ireland they don’t give the injections so every cycle I got antibiotics. Personally I was glad not to have the injections as the side effects sound pretty horrendous. My Onc also said that being neutrophenic means that the chemo is getting right down into your bone marrow, so I looked at it as a positive thing.
Good luck with your chemo. I’ve now 6 weeks of rads!!
Dyane
Just a quick update. I had 5th Fec yesterday (hooray, only 1 left ). My Chemo Nurse spoke to Onc about neutropenia. As my Onc wasn’t available, she spoke to an alternative one. This Onc still would not give Neulasta but instead gave me Ciprofloxacin antibiotics to take from day 8. Apparently its not my hospital’s policy to use Neulasta. Fingers crossed that bloods will be ok in 3 weeks and I can have last cycle of FEC!!!
Mac123 that’s the tablets I got for every cycle as I was neutrophenic for all 6 FEC. It’s just different hospitals, different routines!
Dyane