Been Poorly with Neutrpena Sepsis on 2nd Tax/Carbo

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Had my second Tax/Carbo on Monday 23rd July but was admitted to hospital on the 27th with a temp of 38.5 as was was starting to feel realy unwell, when i got to hospital i was found to have neutropena sepsis with an infection of an unknown scorce so have been haveing what they have have called the big guns anti biotics by regluar daily infusions ever since untill yesteday morning when my own neut count thankfully skyrocketed significantly enough allowing me finaly to be allowed home with a further week of very strong oral Abs.
I can honestly say i have never felt so ill in my life as i have done this last week, throughout my hospital stay my temp has remained consistantly over 38 and on many onacassions has been as high as 38.9 dispite being on 2 very strong iv abs since admission but unfortunately these still wasnt getting control of the infection , have had 2 lots of blood cultures done dureing my stay but they didnt yeild any results and so they still cant find the scorce of my infection , have also needed 2 infusions of potassium as my Potassium levels have become very low , one 5hr and 8hr infusion of potassium and regular fluids throughout of up to 7hrs at a time of body balanceing fluid salts, the pracetomel was the only thing keeping my temp under control but unfortuneately was only masking the infection as when we skipped a dose once a day to test my normal temp it would quickly rise again to 38 and above arghhhhhhhh. my chemo ward has been trying very strong broad spectrum ABs the big gums they called them, and hopeing they would work for me as without finding the scorce of my infection couldnt give me a specific Ab for what i was fighting! This chemo has been blooming EVIL for me, l have a mouth full of ulcers which hydrozone is helping an extreamly sore and raw toungue ,feels like ive been licking sandpaper for hrs , and very sore lady bits to name just a few grrrrrrrrrrrrrrr. I hate it, and just want to feel normal and well again.
Anyway, thankfully i finaly got home last night on day 8 after a 3rd type conbination of Abs infusions was introduced the previuos day and my own body neuts have finaly started to climb , still feeling very weak and wobbily but the increase thankfully has been significant enough for the drs to allow me to be put on some very strong high dose oral anti biotic so after some pleading from me they have allowed me to come home with the oral abs which i have to stay on for a further week as long as i keep resting up and keep takeing it very easy

Been discharged with a heap load of meds to continue with. and also have to continue with more of the soulable potassium tabs 2 x 3 x daily, god they are bloody foul !! for a couple more days yet grrrrrr untill blood is checked again Ive had a long chat with the chemo ward onc who has been brilliant throughout and has been keeping my own onc (well junior as mine seems to always be unavailable dispite only being 2 floor below my ward) informed of everything thats happened this week and will be seeing my own oncologist (hope) thursday for a clinical assessment…The ward onc has told me that all my ABs have been the big guns and dispite them not controling the infection what they did was stop the infection from spreading thrughout my body, my heart and blood pressure thankfully has remained stable and this is why they know they have helped to at least control everything, they have also told me that one of my blood markers which they look at for infections had risen significantly from 800 to over 1100 dureing my stay meaning that whatever my infection was it was a much more serious infection in comparion to the flu ect , we still havent been able to find the scorce , and have been told sometimes they never do, but there job was to keep on top of it and stop it from spreading throughout my body which they have done brilliantly thank god.The ward onc has also been looking at all my blood results since April when i was first re DX again and has now found that my red pallet count results in april was 14 which ive been told was very good but between april and now my pallet count is 8 which is almost half what it was, he has told me that for my pallets to have dropped that low in that time the thing they would normaly be looking at is either internal bleeding somewhere ( which they are quite confident i dont have) or possibly blood loss due to my surgery plus the bleeding piles ive had throughout both chemos due to the constipation dispite taking many strong daily laxatives. Unfortunealetly I now need a blood transfusion, which the chemo ward has decided i will be haveing just before my next chemo in 9 days time to give me the boost i need then instead of before i left yesterday, im very tired and breathless sometimes and have been for a few mths now so know now why this has been.

Am realy not very happy with my own new onc, ive seen him once for treatment planning only, unlike my origional onc who i saw throughout active treatment and felt very cared for , my onc didnt visit me once while in hospital dispite and only being 2 floors below me and the ward oncologist was only ever in contact with his junior throughout, the chemo ward has recommended i now have the GSCF injections for all my future chemos BUT this junior has poo pood the idea saying that the GSCF jabs dont realy help stop neutropena sepsis just looks on blood results that we have more neuts, What BO***CKS they worked for me last time while i was on the Tact2 Trial and i know ladies are given these jabs if they have had this problem too. Anyway when i go thurs il be haveing very strong words with my team about the whole situation and if im not happy will be insisting that i get transffered back to my origional onc who i feel safe with and trust. Its been a bloody awfull and scarey week for me grrrr i have never felt so poorly in my entire life , and after a lot of thinking about all thats happened after only 4 days after haveing chemo (not even my low week) unless they let me have the GSCF jabs i will seriosly be considering not haveing anymore chemo, i want to finish chemo, but know i cannot go through all this again without some help, am happy to carry on with my herceptin and raiotherapy and hormone therapy regardless. But i realy feel quality of life is more important to me than quantity and always have so please dont think im being a wuss ladies ,im not new to chemo and know how hard it can be sometimes but at the end of the day chemo doesnt guarrentee a cure it still leaves me perssonaly with a 20% risk of reocurrence and im here fighting this for the second time in 5 yrs dispite previous chemos ,its all risk vs benifit at the end of the day i guess but unfortuneately chemo has its own very real risks too ,so for me unless i get the GSCF jabs to help with future cycles i am seriously considering stopping.
Sorry for my long post and rant everyone , just feeling very tired,low and scared of this treatment and am fast looseing the will to carry on tut, life on cancer treatments certainly aint no picnic. Love and massive hugs to everyone else there haveing a very hard time.

Love to all

Linda xx

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Hi Linda,

You really been through the mill and to say that is an understatement. I know through my forst chemo I had fsg injections no pinic but worth having them to keep your white cells up to fight the infection. I really hope you get all this sorted out on Thursday and I cannot believe the reaction of the oncologist fofr not putting you on them soon as. Have you thought about having a reduction on chemo? I know I have had to have mine reducted because of bad se.

Just to wish you all the very best for Thursday and please let me know how you get on. Hope your getting lots of pampering and rest because you certainly deserve it. Also that the AB’s are kicking that infection into touch.

Take good care of yourself and I hope all your suffering has a fanastic outcome.
Love
Chris xxxx

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Thanks Chris, im feeling a lot better now my own neuts have kicked in and am fighting the infection myself along with the oral ABs, its been a h**l of a week and not one i would ever want to go through again, its very scarey when you have no control over what your body is doing and neither does the hospital, thankfully all the IV ABS did stop the infection spreading throughout my body even when they didnt tackle the site of infection otherwise i might not be here now, like you i cant believe the reaction of my own oncs team about the GCSF jabs i had these before when i had chemo 5 yrs ago as part of a clinical trial and had no probs with neutropena sepsis and never even had my chemo delayed dispite haveing chemo fortnightly back then, i am prepared with some strong questions that i want answers to on thursday as im not prepared to put myself in that position again without some help next time Its very scarey and frightening stuff sometimes isnt it so i need to get some confidence back in my team and the care that i feel i am not getting at the moment. Lots of questions that need lots of answers to, not just with with how its been for me this week but also other stuff. .
Hope you are doing ok Chris,very best wishes to you.
Linda x

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Hi Linda,

I have previously been on FEC with bareable side effects but had my first Tax 3 wks ago and i also feel like have been to hell and back. i am only just starting to recover but have my next chemo in 3 days! I had excruciating stomach pains, my mouth was so sore I was on baby food for two weeks and I went into hospital suffering with neutropenia and a temp of 40. They also couldnt find the source of the infection. I had to go through A&E which was traumatic, it took 4hours for them to find a vein they even tried my feet! I have wanted to give up on chemo several times on Tax, my only hope is it doesnt hit me as bad for the next one. They wont reduce my dose even though im on 15% extra as it is due to my young age, im on 75% in total (i think 100% would kill me) but they are going to give me some injections so that must be what you have mentioned. Im so scared and have just wanted to take my chances with cancer but I have only thought that when been at my lowest or in most pain, Im in the poor prognosis category so i understand they want me to stick at it, its just sooooo hard. They said to continue taking my steroids for a few extra days to ease the pains, but I suffer with the steroids too so its a case of what is worse. I cant wait for this to be over and to feel healthy again, I hope you get the injections and i wish us all lots of luck

hobo xx

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Hi hobo, am sending you massive hugs as know exactly how you feel and what youve been going through,like you at the moment im feeling like this blooming chemo will kill me before the BC does, its very scarey stuff someimes and the SES on this chemo for me are horrendous its realy hitting me hard. Am sending lots of best wishes for your next cycle and will be keeping everything crossed that this and future cycles will be much kinder to you, all the very best to you pet, please let me know how you get on.
Big Hugs to you
Linda xx

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Hello ladies,
I just wanted to send you big hugs and to suggest you both get the neulasta injection. I have had 4 tax/carboplatin. Although the SE’s are horrible, with the last two, I have been really ill for about a week and then start to pick up. The first two were awful, but I had other problems too. I still have two to go and know that these will be really hard, but I honestly believe that without those neulasta injections, I would have been neutropenic. I really hope that your recent experiences will make a good case for having them. It must have been horeendous to go through A and E hobo. I had to go to A and E with an infection post my mastectomies. It was awful. Linda. You need to have faith in your treating team. Hope you feel strong enough to go in and tell them what you need!
Thinking of you both. Rattles x

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Thanks Rattles, i have an appointment with my onc tomorrow for a clinical assessment and will be pushing for the Jabs as i will not be happy carrying on wothout some help, the chemo ward onc why i stayed last week has already reccommended the GCSF jabs to my own onc but apparently he has poo pood them saying they dont realy stop Neutropena Sepsis which i think is ridiculas ,they certainly DO help as i had these jabs as part of a clinical trial with my last chemo and i never once ended up in hospital or had my chemo delayed dispite haveing chemo every 2 weeks instead of 3 , i think if i get refused the jabs it will be more of a funding issues so am ready for a fight!
Will let you know how its all gos after tomorrow, am due to have a blood transfusion before monday now as red pallets have dropped by half, am very tired and keep dropping of to sleep at a drop of the hat, fell asleep 5 times yesterday grrrr so suspect thats the aneamia, hopefully il feel much better after the transfusion.
Hope you are feeling much better Rattles ,this chemo is evil stuff!.
Linda xx

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Hello Linda
Oh, I am sorry to hear that you went through so much. I just can’t imagine how the oncologist take us for granted. When you meet your ONC today, i wish you take a friend or somebody who supports you. I can understand these ONC have great work load but at the end of the day we place tremendous trust on them, anyways, they should have given you GSF after the tax, they usually highlight next to your records on the computer if you had it few years ago, I donot know how it was overlooked.
I had similar expereience like you couple of months ago. On the third day of doxitee, I developed low temp, severe muscle pain, mostly on my legs, couldnt move an inch, and had low BP. I was admitted for 10days with neutropenic sepsis, tried many antibiotics and finally when the count was up I was discharged and told that I will have GSF during the rest of my chemo for 5days. I was given 75%dose next time, I had anaphyalctic reaction and subsequently they tried TAX for which also i had anaphylactic reaction. Now I have moved on to CMF and was told I will have one extra cycle of CMF because I can’t have TAX. Tax is the worst drug I could say, but please don’t loose hope, these are their to help us, it manipaulates the brain, rightly said we are sailing with a chemo brain, but we are all here to support each other, so don’t worry to vent your emotions.
If you feel poorly, you dont have to go through A/E, your ONC should have given you a number to contact during day time and if at all in out of hours, go through badgers clinic they will speake to A/E and see that you dont wait for hours and put yourself in more risk. ask your ONC today for details.
I found some diets kinder to me during chemo and it has avoided me getting mouth ulcers. I have yoghurt with banana first thing in the morning and have another helping of yoghurt during the day. Frequent mouth wash is helpful too and my ONC gave me fluconazole for few days, which helped too.
I suggest you speake to your GP. Before my diagnosis, I have hardly seen my GP for myself, but now I have reqular visits with GP even for minor problems, he supports you and he can write to your ONC too. Also speake to your breast care nurse, they are a good support too and give valuable advise, infact she visited me promptly when I was admitted when the ONC team came to see me only few hours before my discharge, despite given message by myself and alos by the doctors in the ward. My husband luckily was there at that time with all my children and he was really upset with them. we are very polite and we go through difficult times. But it is right on our part to make them understand how we feel. Ask questions, write down in a notepad and see you get answers.
Hope you will be better and lots of love and prayers for you and all the ladies who are struggling
Gary