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kane744
kane744 Member Posts: 461
edited June 2014 in Lymphedema

Had my 2nd chemo 8-23. Hives came back but I had all the meds to treat so they spread no further than scalp and neck. A few days later became desperately ill. Finally gave up and went to bed. Couple days after that my temp soared to 103 and we went to the ER. After my blood counts came back, I was admitted to the Oncology floor. All rooms are private which is nice, but lonely. Except for my dh, no visitors allowed, no flowers, no fruit baskets. Received massive doses of antibiotics and 2 units of blood. My onc had removed the one new thing she added from 4 years ago, Neulasta, but since I still got the hives, determined it was Tax I developed allergic reaction to. Was in hospital 3 l/2 days.  Was soooooo glad to be home.  

Onc said she's going to do A/C for third treatment. Had a test to see if my heart can take it. Have not had any feel good days throughout this 2nd cycle so am terrified for tomorrow's treatment. It would be awful to go through all this shit and end up having a heart attack.  I want maybe a different drug with fewer se's. Have two pages of questions for her. Am pretty weak and beat up but yesterday I ate like a pig. Couldn't seem to stop. Think this was a good thing. Today my goal is to take a walk, the weather's been so beautiful.

Here's the interesting thing. I was so sick and weak, did not do any MLD or wear my compression garments for nearly 2 weeks now. When I got home, my Chickley therapist came by to give me a treatment and said I was in amazingly good shape. She said that's probably cause I'm not doing anything and propping. But she encouraged me to at least wear my Jovi at night which I have started doing. It's like my LE went away.  (I KNOW it didn't.)  Still do not have energy to do MLD or get my day compression on. DH is gonna try to help me get it on today but it feels so good not to wear it and I don't think I should have to while I'm dealing with all the chemo crap.

Don't know what tomorrow's treatment will bring but dh and I have decided at the first sign of things going south, we're heading right out to the ER and not delaying like last time. Then maybe they can treat and release and I can suffer in silence at home.

Wish me luck. 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2012

    Kane!!!!!! What an ordeal wishing you all the luck,and thank you for checking in.

    Glad the LE is behaving.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2012

    Kane - What a miserable experience! So glad your LE is doing well in spite of all else. Your strategy about heading to ER sounds like a good one.

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited September 2012

    Kane--Been thinking about you.  Hang in there. 

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited September 2012

    Indeed, Kane, best of luck! Thinking of you and appreciate that you checked in!

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  • Marple
    Marple Member Posts: 19,143
    edited September 2012

    Good luck tomorrow.  Thankfully the LE is behaving.  You've got enough (too much) on your plate.  Hugs.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2012

    Kane, thank you for checking in, and warm wishes for the best of luck!

    • Your Mods

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  • djls
    djls Member Posts: 65
    edited September 2012

    Hope your treatment goes well without any more complications!

    djls

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2012
    Right there with you tomorrow, Kane. Be well!
    Binney
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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2012

    Kane, thinking of you. Hoping all the side effects were well controlled this time and you're resting up at home. You need some of those "feel-good" days, and I hope today everything's heading in that direction.

    Be well, y'hear?!
    Binney

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  • kane744
    kane744 Member Posts: 461
    edited September 2012

    Was pretty sick for a couple days, but yesterday was able to get up, take a shower and go downstairs.  Appetitite not back. Everything I try to eat tastes like cod liver oil. Awful. Managed to down a pbj and Boost cause I know this won't last. Will have my blood levels checked BEFORE next weekend this time since my problems have been occurring in that weekend time frame. Had a Neulasta shot which really helps but it's so expensive I feel guilty. Why do the drug companies charge so much?? Today I woke feeling better than yesterday. I am happy. If this keeps up, I will surely have a bunch of good days to build strength for the final chemo treatment Oct 3. Thanks for checking on me.  

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited September 2012

    Kane--I really hope you do have better and better days and build your strength for that final dose.  Keep us posted.  I think about you often.

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  • Adey
    Adey Member Posts: 3,610
    edited September 2012
    Swell friends!  Laughing
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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2012

    Hey, hey! No ER! Sounds like they're on top of the issues this time, but keeping you in my thoughts and prayers for the blood tests.

    ACTongue out--all I could eat was Cream of Wheat and (bizarre!) fish tacos (which I normally dislike). Goes okay with the cod liver oil, y'knowUndecided? Hope you find enough you can eat to sustain you while you recover. 

    This, too, shall pass. (Just not soon enough!) How's the arm doin'?

    Huge, gentle hugs!
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2012

    Kane, just one more to go, and you're done!

    Yeah, neulasta is expensive, but you do need those white cells.....

    Soon you'll have this behind you, and let the healing begin! And back to your horse boyfriend.

    Thank you so much for the updates.

    Kira

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  • kane744
    kane744 Member Posts: 461
    edited September 2012

    OK, today have noticed the slightest boggy feeling in my LE arm.  Tried a mini massage while showering but was unsuccessful getting my compression sleeve on. When I say I'm weak, I am so serious!  My dh offered to wrap but here is what I've decided. I am so deflated in spirit and utterly fatigued that I can deal with one thing only and that is getting through this chemo treatment. A few more weeks and I will be the compliant LE patient I once was.  For now, will prop during day, wear my Jovi at night (which I was too tired to do since round 3), and deal with the consequences later.

    Today is day 5 after round 3. Based on experience, my problems start between days 7 and 10 so keep your fingers crossed. Thus far, no se's at all other than the fatigue and no appetite. Am trying to force myself to eat more, because that will make me feel stronger,  but it's almost all still tasting like fish oil. (Binney, almost tossed my cookies when you told me what you could eat...fish tacos, ugh.)  Yesterday I had a milkshake which did not taste fishy at all.  Drank half and have the other for today.  Loads of protein and calories. Still have some soup left which tasted OK the other day. Really, though, I just have no appetite and it's so hard to force it. I am still losing weight but onc not worried yet. All the old, packed away jeans will definitely fit me now.

    That's all for now.   

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  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2012

    Kane, just do what you can do.

    Baby yourself, rest, hydrate and eat what appeals to you.

    Fingers are crossed for an uneventful day 7-10, and smooth sailing for the final round.

    Kira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2012
    Aw, Kane, you're so wise! Yes, let it go--elevate, hydrate, deal with it later. Good for you! Prayers for days 7-10 and beyond!
    Hugs,
    Binney
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