First Complication...

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HerSister
HerSister Member Posts: 51
edited June 2014 in IBC (Inflammatory Breast Cancer)

My sister is now at the ER w/ a temp. of approx. 102 (up from when she first caught it at 101.5).  She's also had diarrhea since yesterday, which she figured was from the chemo (very 1st treatment was on Fri. 4/22), but now we think it's probably related to the elevated temp.

If I'm understanding what I'm reading (may not be, I'm pretty tired & not comprehending very well right now) I think the Leukine can cause this(???).

Does this happen alot during chemo - bad temps (they told her anything over 100.5 is a trip to the ER), infection & trips to the ER?  Of course I'm very concerned, but I'm just wondering how serious this could be or is it sort of par for the (chemo) course?

This is all so new & I know sooooo very little.

Thank you for your help,

Marianne

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  • grneyd5600
    grneyd5600 Member Posts: 420
    edited May 2011

    Marianne,  sorry your sister is having so much trouble.  She is right to go to the ER.  We definitely are told go if temp goes above 101.  I don't know what the Leukine is but I do know that nausea and diarrhea will make her weak.  A lot of times if they can get her hydrated with an IV of saline it will be the temp down.  She may have an intestinal bug that is reacting to the meds as well.  Since her first chemo was 4/22 I suspect it is something like that rather than the chemo but they will figure it out.  ER is the right way to go.

    Keep us posted and get some rest yourself.  She will need you refreshed.

    Hugs!

    Jackie

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  • HerSister
    HerSister Member Posts: 51
    edited May 2011

    Hi Jackie,

     Thank you so much for your reply & help!  She has a neutropenic fever from low white blood cells.  She said her count was zero - don't know if that's possible for it to be absolute zero, they probably just meant extremely low when they told her zero.  She said they'll be keeping her "for days" (her words, don't know exactly how long) and that she (and her husband who is with her) are wearing masks & she has to avoid people. 

     The Leukine is the daily injection they administer daily for 7 days (no earlier than 3 days after chemo) to stimulate our bones to produce white blood cells (the one that hurts your bones).  Don't know if this means the Leukine is not working and maybe she needs to be switched to Neulasta or another like it.  I remember reading one post somewhere in this forum that stated the Leukine-type drugs won't actually increase your WBC count, but it is supposed to keep it from bottoming out.  The unsettling thing is that she's not being immediately treated by her own Onco., but by the on-call Onco. and only via phone at that, as the hospital staff only calls him when needed.  No mention of perhaps switching her from Leukine to something else.  Maybe this will still happen. 

    You are so sweet to suggest rest for me!  This is our first week w/ treatment & to be honest, I've cried every single day this week, several times a day and it's just got me tired.  I've also been moved to tears over everyone's stories here!  May I ask how you are doing on this emotional, difficult (at best) journey? 

    I TRULY pray that you and everyone here have long, long, long, happy lives, free of disease!

    Hugging you back!

    Marianne  :)

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  • grneyd5600
    grneyd5600 Member Posts: 420
    edited May 2011

    Marianne

    I got a Nuelasta shot the day after each treatment.  It was a one time shot and it did the same things as the Leukine.  Maybe they can find something that her body will react to better.  Sounds like the Leukine didn't build her white cells like it should have.  Maybe her body didn't react well to it.They will figure it out.  I wouldn't be alarmed about the on-call onco versus the actual one.  I had an occassion to have to call for help over a weekend and got the on-call onco myself.  They were really good about a) asking my history and b) checking with my onco when they needed to in the process.  Remember they are in the business of making us survivors so they want what's best for us even if they aren't our full time care provider.

    Please know the journey your sister is on is a rough road but those of us just a few steps and many steps ahead will light the way.  There are tons of good idea's, suggetions and information on this site for both her and you.  NEVER underestimate the amount of effect this has on you though.  My sisters were both touched by the effects of my journey and they weren't nearly as actively involved as you are.  Hang in there!

    But, just like when you have a newborn baby at home - get sleep yourself when you can.  Find something that let's your mind relax and have some down time that isn't filled with worry.  You will need it as your sister's journey is just under way.

    There are lots of great survival stories here on the board! As for your question on the emotional side - I did well with my emotional status along the way but had a hard time as I finished up treatment.  I finally allowed myself the opportunity to face what had happened. It rocked me a bit for days.  I finally allowed myself a chance to mourn.  With that said I come here and read posts of hope, vent, "talk" to my fellow sisters battling and surviving.  I went back and re-read a lot of my books I got in the beginning that wee so upbeat and positive. 

    Keep those prayers coming!  We all welcome them.  We will keep you in our prayers.

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  • HerSister
    HerSister Member Posts: 51
    edited May 2011

    Hi Jackie,

    Thank you so much for your sweet reply!

    My sister was admitted to the hospital on Sat. (4/30) evening and by Monday (5/2), her WBC count went from 2 to 8, so they discharged her Monday afternoon!  As far as I know, they did nothing extra to boost her WBC.  She was just on fluids & antibiotics.  They never did find an infection, but sent her home w/ a script for antibiotics just in case.  They diagnosed her w/ Neutropenic Fever (due to the chemo, of course), which is a low WBC count & possible/probable infection in 50% of the cases of Neutropenic Fever.

    She is now feeling tons better, has an appetite and sounds like her old self (her voice became week and very sad after her first chemo tx).

    Thank you for allowing me to know how this affected you emotionally.  I apologize as I was more inquiring how you were doing healthwise w/ treatments and all (sorry about the confusion, esp. if it seemed I was prying)!   : ) 

    May I ask what kind of books you found that were helpful?  For instance, were they about cancer or just encouragement type books?  They only one I know of so far, is "Waiting for Wings" by Heidi Marble.  I have yet to get it, but I eventually want to get a copy for my sister.  She's basically of the mindset that if the chemo gets all the cancer (if we can convince her to stay on chemo), then she won't have to have an MX.  Maybe it would help her to read another woman's experience.

    God bless,

    Marianne 

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  • grneyd5600
    grneyd5600 Member Posts: 420
    edited May 2011

    Marianne, I read -

    "Don't bet against me" by Deanna Favre

    Chicken Soup for the Soul - Breast Cancer Survivor

    Crazy Sexy Cancer Survivor by Kris Carr

    I read some more but these were the ones I thought of first. 

    I absolutely don't mind any questions you have.  This journey has been made better by me being able to share my experiences.  If I can help you or your sister it helps me too.

    God Bless,

    Jackie

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2011

    Hello -

    Here is a book recommendation which has a lot of good information in it - Living Through Breast Cancer by Carolyn M. Kaelin.  She is a physician and BC survivor and she includes a host of generalized on all kinds of surgery, chemo, exercise, diet, etc. as well as her own anecdotal experience as a patient.  I found it very helpful soon after I was diagnosed.

    As far as her neutopenic situation - medications sometimes take time to work to stimulate the production of white cells which may have been the case for her, and sometimes they never do work. The nadir (lowest point) is usually about a week or so after chemo.   Unfortunately there is not much you can do to assist in that white cell production, such as eating something different, etc.  That is why drugs are used for white cell production and not red cell since that can be affected by diet.  It may be that since the initial medication used did not protect her or had a delayed response, she may now be a candidate for Neulasta, which is an actual stimulant.  That being said, it does not always work either but they will know one week out from injection, when a CBC is done.  If her counts are not up after Neulasta they will most likely give the prophy antibiotic and remind her to use precaution to avoid crowds, wash hands, etc.  If they do give her Neulasta I recommend taking Claritin an hour before and for two days afterward to try to minimize bone pain.  Have her check with her onc before doing this.  Nodoby really knows why it works, but it seems to for most folks.

    I can say that for me the 1st tx was the worst. Once I learned what my specific SE's would be it was easier to manage them. I am now on #4 out of 6 and my chemo is adjuvent, meaning I have already had a skin and nipple sparing bi-lateral MX.  It is not likely she will avoid surgery but maybe if she is neoadjuvent she can be a lumpectomy candidate?  The nice thing about chemo before surgery is that diagnostic testing will show the chemo working and that will be an encouragement for her and something to celebrate as she goes along.

    Best of luck to you all!  And do take care of yourself - it is frustrating sometimes to be the caregiver because you can't make it all better.  Just do your best to provide support - I know she will be most appreciative.

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