Neutropenic Sepsis

FormerMember
FormerMember
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My Husband was diagnosed with Ewing’s Sarcoma in July this year. He has it in his lung. Having never been ill in his life (apart from Man Flu a couple of years!) he is struggling with sometimes not feeling well. Generally he is well most days it’s only after chemo days he isn’t great, he is on his 4th out of 6 cycles of chemo which is an intense course. On the 3rd cycle he developed neutropenic sepsis & was admitted to our local hospital for 5 nights. He regained his strength & was ready for his 4th cycle which went well. 5 days afterwards and he has been admitted to hospital again with neutropenic sepsis.

First time round I was terrified, this time we were aware of the symptoms & didn’t panic so much.However I am struggling with my emotions & I sometimes feel like I’m at my wits end with it all! I have family locally to me & a great friend support network so why do I feel overwhelmed with it all?

i am tired mentally, emotionally and physically and really don’t know how much longer I can cope like this?

  • FormerMember
    FormerMember

    Morning 

    Sorry to read your husband has been hit with Neutropeania again Disappointed

    I'm surprised after the last bout of this G-CSF (info link) various white cell boosting meds were not offered.

    Perhaps with Ewings he cannot have these injections ? My wife had breast cancer and also got NS but I am in the dark a bit with Ewings Sarcoma but it may be worth enquiring about as he has two more sessions to completion.

    It can be tough on the carer when a partner is going through chemo when all you both seem to get is yet more hoops to jump through Disappointed

    Have you mentioned this to your GP ? maybe a short course of low dose tablets can help you sleep better so you don't so feel so fatigued and mentally 'washed out'

    Hope this is of some help, G n' J

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Dreamthief

    Yes he is receiving Gcsf injections. After the first 2 cycles he had one large dose 3 days after chemo. Then when he was admitted with NS the first time they gave him a smaller dose every day until his neutrophils were back up again. On completing cycles 3 & 4 they decided to give him the smaller doses of gcsf for 5 days after chemo but it still really hasn’t made a difference to the NS.

    last time he was in hospital for 6 days so I’m hoping as it’s not quite so bad this time he may not be in as long?!

    For me I think it’s especially hard as my Husband has never been poorly, he has been the fit one, looking after me with multiple illnesses over the years!

    i have made an appointment to see my Dr to talk over my anxiety but unfortunately no appointments available until 16th Oct! My sleep pattern actually isn’t too bad I’ve always been an early riser & can survive on about 6 hours sleep, but occasionally I just need one day of pure rest, doing nothing! Mentally I sometimes think my mind is on overdrive & I find I can’t even think straight!!

    Its good to talk though, so thanks for your communication.

  • Dear Catchintherays, I'm so sorry to hear about your Husband and his problems with N.Sepsis. I know where you are coming from yourself with the emotional strain as I am going through it myself. My wife has Small Cell Lung Cancer and after her first cycle of Etopiside and Carboplatin she ended up in hospital with N.Sepsis. They then decide to give her a Pre-filled syringe with a booster for her white cells to kick start again after the chemo. This worked.

    You must stop feeling upset and carry on the best you can. It can be hard but you ARE doing everything right to your best. It does get easier some days so enjoy them while you can. Just be strong!

    God Bless

    BILLYTHEDOG
  • FormerMember
    FormerMember in reply to FormerMember

    Hi

    I think you should play the 'cancer card' with your surgeries firewall receptionist and get an earlier appointment....

    If you just phone up and say you are anxious you get a low priority appt date, so do tell them how it is  Disappointed

    G n' J

  • FormerMember
    FormerMember in reply to Billythedog

    Hi Billythedog

    Thanks for your communication. Yes some days are easier than others that’s for sure. On those days I am truly grateful & we do tend to make the most of it, although My Husband is adamant he is going to work those days! All be it he works from home, I feel on his good days we should be spending time together & doing things and enjoying it while we can, but all he wants to do is work! His company are not English and their ideas of being ill but continuing to work are completely different to ours, so my Husband feels he needs to work !

    I count every day together as a blessing but some days are just harder than others & I feel guilty for feeling sorry for myself Cry

    We have been together 45 years & married for 42, he is my soul mate, husband, Father to our 3 Children & Grandad to 6 Grandchildren. He is so positive and we are all trying so hard to be positive too but life some days are sh..!!!

  • Catchingtherays DO NOT feel guilty about feeling sorry for yourself. YOU are suffering this Disease also like me. We need to take time to ourselves and reflect on whats happening and if it means having a Mad moment then so be it. Your hubby is probably just trying to keep his mind active with his job but if his employers are that bad with compassion then get him to leave them. His health is more important.

    I too count everyday as a Blessing as back in January 2019 my wife was given 2 months without treatment and 12 with treatment. 7 months have passed and I get more upset with everything. She has been my life for over half of it and thats marriage for 25yrs. 

    Life is S**T!!! But its beatable!

    God Bless you Both 

    BILLYTHEDOG
  • FormerMember
    FormerMember in reply to Billythedog

    Dear Billythedog

    i am so sorry to hear about your Wife.

    This awful disease certainly doesn’t choose who has it by reading some of the comments on here that’s for sure.

    How do you cope day to day?

    i just feel the same but my mind is on overdrive sometimes, other days I feel guilty for feeling normal??!!

    With only 2 more cycles of chemotherapy to go I am

    frightened of what will come and what time that will give us together?

    Today after visiting him he seemed more cheerful & didn’t look poorly with his neutrophils up to 1.9 he seemed happier.

    Then a phone call some 3 hours after leaving him to say the levels are down to 0.5 & the feeling of dread comes back!!

    Another day of not having him home but knowing he is in the right place being cared for!

    Lets hope tomorrow brings us all a good day x

  • Hi Catchingtherays, I'm sorry to hear whats happening with your hubby. He is in the right place and being looked after. The answer to your question is I just have to cope. I live for today, yesterday has gone and tomorrow is yet to come.

    My wife was up and down with her chemo and she knew it was helping. So did I. 

    I have cryed buckets of tears as she has been going through the side effects of chemo and now we are at the radiotherapy stage.

    Your husbands bloods will kick in and rectify things. Just keep your chin up.

    God Bless

    BILLYTHEDOG
  • Hoping your husbands neutrophils are back up. It really doesn't discriminate our healthy  25 year old son was diagnosed 23 August out of the blue with Acute Lymphoblastic leukaemia (hate the words).  He only graduated mid July it turns everyones life upside down.  We had good news yesterday he is in remission but will need bone marrow transplant in few months.  But starts phase 2 next of intensive chemo  treatment or lemon treatment I call it as I hate the other word.  We feel angry and just want all our lives back  sorry for going on a bit down today. 

    Thanks

    Hayley 

    Hayley 
  • Hoping your husbands neutrophils are back up. It really doesn't discriminate our healthy  25 year old son was diagnosed 23 August out of the blue with Acute Lymphoblastic leukaemia (hate the words).  He only graduated mid July it turns everyones life upside down.  We had good news yesterday he is in remission but will need bone marrow transplant in few months.  But starts phase 2 next of intensive chemo  treatment or lemon treatment I call it as I hate the other word.  We feel angry and just want all our lives back  sorry for going on a bit down today. 

    Thanks

    Hayley 

    Hayley