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How are people with liver mets doing?

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Comments

  • BevJen
    BevJen Member Posts: 2,341
    edited August 2020

    Folks,

    As you all know, Nicole had her first infusion yesterday of eribulin. Her husband sent me a note to say that she ended up in the hospital last night with a 102 degree fever. They've now released her but she still feels horrible. All the blood and urine tests came back fine. He/they were wondering if anyone had any insight into this -- has anyone had this kind of reaction to eribulin (halavan) or have any insights?

    Please keep her in your thoughts. Thanks.

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited August 2020

    No experience with halevan but prayers for NicoleRod.

    Dee

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited August 2020

    thinking of Nicole.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited August 2020

    I’m back in the hospital again. Blood draw yesterday results came back and my hemoglobin is down to 5.5 lowest ever.

    Admitted to hospital because it will take so long to match my blood type and I have to get 3 bags this tune around. I knew my legs were wobbly but didn’t think it was this bad.

    Won’t be done till late tonight and they want to watch me for another delayed response.

    Hoping to be home tomorrow but I really need to know why my body is eating all my red blood cells. Getting very frustrated.

    This group is the best. Thinking of everyone.

  • Bliss58
    Bliss58 Member Posts: 938
    edited August 2020

    Thanks BevJen for the update on Nicole though I'm very sorry to read she had this bad reaction. Nicole, thinking of you and still holding you in my heart. Hoping this quickly turns around for you.

    LFF, very sorry to read you're in the hospital, too. Fingers crossed you go home tomorrow and they get you some answers.

    Sandra & Saulius, sending positive vibes your way for great scan results.

    Hello and hugs to anyone I missed.

  • intolight
    intolight Member Posts: 2,439
    edited August 2020

    Nicole, sending prayers the docs are able to bring your counts up. LFF, also praying for you I am sure the hospital is very scary right now on top of your own scare. I wish there was a "like" button so we don't repeat everything, but I agree with BevJen in sending scan wishes. I am still struggling but was able to get up and make some pico to go with dinner tonight so things are a little better. A combination of tooth pain, weakness and dizziness from X have kept me down for a few days. Hopefully will get it all sorted next week. I am sure we all have additional concerns not posted, but know we care here.


  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited August 2020

    LFF my heart hurts that you are going through this again. Prayers for resolution and home quickly.

    Dee

  • Bliss58
    Bliss58 Member Posts: 938
    edited August 2020

    ShetlandPony, in scrolling back, I see now that I missed the potassium foods list you posted for me. Thank you very much! Some I knew, but many I didn't. I'll put the list up on my frig, too. Thanks again.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2020

    You're welcome, Bliss!

    BevJen, please tell Nicole and her husband that I had unexplained fevers on eribulin, and they occurred soon after my infusion, maybe two days? There were one or two others on the Halven thread who also got fevers.

    LFF my friend, I'm so sorry to hear your low hemoglobin landed you on the hospital again. I wish there was something I could do, but since I can't I will just sit by your bed and wait with you.

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited August 2020

    BevJen - so shocked and saddened to hear this. Please send her my love and tell her I am praying. 🙏. Surprised to hear she would spike a fever so quickly after infusion. The oncologist "on call" could not offer any explanation? Seems she may need something in pre meds? Does she have a port or did she have any issues with veins during infusion? Hoping her MO calls her today.

    Question - did she have a terrible headache or was she taking zofran?

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited August 2020

    BevJen- just came across this. Apparently eribilin can cause fevers....as I see others mentioned.

    https://www.breastcancer.org/treatment/side_effects/fever


  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited August 2020

    LFF - can only imagine your frustration. Wish I had an answer. Praying 🙏 they find and answer to this. You are not alone....we are here for you.

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited August 2020

    IntoLight- thinking of you and wishing you strength and hope. Each day a little better. prayers 🙏.


  • candy-678
    candy-678 Member Posts: 4,182
    edited August 2020

    Thinking of Nicole and Leftfootforward today.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited August 2020

    Poor Nicole after all the soul searching and decision making for this to happen must be discouraging to say the least.

    LFF UGH 5.5 HGB no wonder your legs were shaky. Do you have an unusual blood type? Just curious why it takes so long to type and match. Praying for your docs to get this figured out.

    Intolight Hope you start feeling better.💞


  • Anewbreath
    Anewbreath Member Posts: 122
    edited August 2020

    Sending Prayers And Peace for Nicole, Granny, LLF and Intolight! Hugs🙏

    I maintained on 125 ibrance for 2 year, last 6 months tumor markers increase 1-2 points each month. (MO said stable) In April/May My ANC came back 700- holding treatment 1 week each month and Then MO switches me to 100mg tablets. June started 100mg - Now my TM went up 10 points this month. MO scheduled me for a Scan beginning of September. Anyone have TM rise after a decrease in dosage of ibrance, without progression

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited August 2020

    My TMs slowly increased over 3 months. MRI Scan at 3 months showed progression. At time of scan, they had tripled. My TMs are reliable for my cancer.

  • Anewbreath
    Anewbreath Member Posts: 122
    edited August 2020

    Thanks Sandy! My TM have been reliable also. I’m grateful for that and also scared. I’m guessing the decrease of dosage is allowing the cancer to progress even more

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2020

    Hi Ladies...Im here *waves hand*. much better today. Thank you for all thinking of me and all the well wishes my heart is full. So had infusion on Thursday. Friday night/ Saturday morning 2am started with uncontrollable chills shivering. Started fever and they said to go to ER. I didn't want to but it got to 102 and my husband was like "get up...were going to ER"...we got there and they took a lot of blood and did chest X-ray. All good. After my fever broke (never took anything for it not even Tylenol) and wanting to go home they allowed it and gave me a script for leviquin (which I haven't taken because all the fevers never came back since yesterday afternoon). I will say I literally felt like I had gotten hit by a truck...ughh. Much better today. I am just wondering if this is gonna happen after every single infusion?

    I have not talked to my MO because she is away until my appt. this coming Thursday.

    Just found out our son and his fiancee have moved up their wedding and its now Oct 3rd. I am suppose to have chemo Oct 1st..that would mean I would be sick the day of their wedding so I am going to have to speak to my MO about alternating the schedule so I am not sick for that.

    HopeandGraditude...I only had 8mg of steroid for pre-med... I didn't want the Zofran bc it constipated me so bad with doxil I was almost impacted. So the other night during the fever I actually took a pill for nausea I believe it was zofran..and again I have not gone to the bathroom yet.

    Also I was severely dehydrated when I got the the ER and I am shocked that I was because I drank 70oz of water Thursday and Friday.... They gave me 2 liters of IV...and I still was craving more.

  • BevJen
    BevJen Member Posts: 2,341
    edited August 2020

    Nicole,

    I am certain that your MO will be able to jigger your chemo schedule to make it work. On my first rodeo (when I did ACT) we had planned a huge family trip six months before my diagnosis, in accordance with my kids' school schedule and my academic schedule. Boom, I was supposed to have an infusion the week we were going to be away. MO said to go, enjoy ourselves, and that I would come in the following week. So it pushed me out a week. The better part was that I had recovered from the chemo before the vacation by the time we went, so I was able to enjoy the trip. Just be sure you tell her sooner rather than later so that she can figure out the appropriate schedule.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited August 2020

    grannex/ I am actually B+ blood type but I have developed antibodies I guess in my case I have 2 rare ones, most people only have 1 or the other of the two. I am always that special perso. Do it takes longer to find me blood as they have to match my antibody status.


  • JFL
    JFL Member Posts: 1,373
    edited August 2020

    Hi Nicole. Glad you are okay. I think I did get some mild fevers on Halaven and currently get fevers up to 101.5 on Gemzar, which is common. The first infusion after my week off is worse than the other infusions. If I really need to do something (I moved the day after an infusion 5 months ago) or do not want to feel bad, I will take Aleve and feel fine and totally functional. It makes my energy and appetite come back and the fatigue and body aches go away. It seems to work better when I take it preventatively. I think the fever is some sort of immune reaction to the chemo itself. Even if you don’t usually like to take fever reducers, it may be worth it for quality of life for the first day or two after chemo.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2020

    You guys are not gonna believe this...ughhhh those that remember when I was on Ibrance..my mouth sores.......It took a MONTH off the medication for them to even start to heal..well my mouth just started feeling raw (on the roof) on the left side just above the gum line.. I WANT TO CRY AND SCREAM!!! I CANNOT DO MOUTH SORES RIGHT NOW!!!!!!!!!!!!!

    I started my dexamethasone rinse...but it's probably not going to do anything and magic mouthwash is not covered by my insurance and it was $600.00!!!!! I cannot afford that.

    I guess I have to try and find the mouth sore thread again :

  • BevJen
    BevJen Member Posts: 2,341
    edited August 2020

    Nicole,

    Take a look at p. 752 of the Ibrance thread where RK2020 is talking about some products that she used -- they were different from the original ones that were discussed before. There are a couple of posts there, including one about something called Dentek. I don't know if that will work on the roof of your mouth, but it apparently covers the sore for some bit of time to help it heal. Good luck.


  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2020

    Thanks Bev :( I have done the Kank aid covering thing when on Ibrance it didn't work well for me.

    I once again have fevers....and my glands are swollen..I have broken down and now am taking the Levaquin.

    Im not gonna lie...I am feeling defeated. I mean not only have I never had a treatment work..but when I have a shot at one working ...my body cannot handle it. I can see now why people just give in to the alternative to just want to die.


  • intolight
    intolight Member Posts: 2,439
    edited August 2020

    NicoleRod, Keeping you covered in prayers right now. My heart hurts for your pain and suffering.

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited August 2020

    Nicole. My heart goes out to you tonight. Keep your faith. We pray and God hears us and answers. I can't even imagine what you and your husband are going through. Hold on. Do not despair. Lets see what the doctors can do to help you to keep.going on this treatment.

    Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited August 2020

    Nicole- we are here for you. I am so sorry. You have been through a lot. As someone who recently went through a dark space I get it. May there be light dion for you to see and until then, let us hrr Er Lo guide you.

    Hugs

  • bsandra
    bsandra Member Posts: 1,040
    edited August 2020

    Uhh, LFF, Nicole... so much has happened while I was away for a day. My heart goes out to you. Cannot advice anything, just holding you all in my heart. Please, dear God, make them heal... Saulius

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2020

    Thank you for the thoughts and prayers. I am up its 5am I have been up since 3am my stomach hurting from the darn Levaquin. My mouth..something strange going on...the entire left side of the my gums upper and lower are swollen?? before anyone asks I have been to dentist 2 months ago for cleaning and all was good so its not gum disease but something is making them inflamed I rinsed with peroxide and water I want to do listerine but I am too afraid it will bring on sores :( ?? I do floss every day..Yesterday the bottom of my left cheek bone was hurting..then all this started?. So now I don't know if its sores forming or something in the gums or just a reaction to the chemo...etc?

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