Unfortunately things are going downhill

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  • Lita57
    Lita57 Member Posts: 2,437
    edited November 2017

    No, eyesight is getting worse.

    Off to taxol infusion today. Hope i have a better week than last week :(.

    L

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  • Kandy
    Kandy Member Posts: 1,461
    edited November 2017

    Artist, I hope you are doing well. My Ibrance was approved and should be delivered today. My back is good today, it seems to be sporadic. Sometimes it hurts other time it doesn't. Got up this morning with my right leg and foot twice it's normal size. Not sure what caused that. Been sitting with it elevated. I hope everyone is doing well. Lifting you up in prayer.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited November 2017

    Oh great kandy! I hope it goes exceedingly well for you. When I first started Ibrance I got a mammoth phantom tooth ache one morning, I mean tears! I rushed into the dentist, she could not find anything and by the second day it was gone. Very weird! Also got mouth sores for about a week.....just FYI

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  • Nkb
    Nkb Member Posts: 1,436
    edited November 2017

    Kandy-I hope it goes well. It's working well for me so far. I did feel really tired on the first month and my blood counts got too low and I had to lower the dose to 100 mg which is much better for me and I feel good most of the time. I do have to take 2 weeks off before I can start the next cycle, but, my MO is not concerned with that at all. I got mouth sores on the top dose which did well with baking soda mouth rinses-don't really have them now and have stopped the mouth rinses. Anyway, so far my scans are looking good and TMs are coming down. I so hope that it works well for you!

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  • Kandy
    Kandy Member Posts: 1,461
    edited November 2017

    Thank you Nkb. I'm praying for good results also. Wishing you the best and prayers always.

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  • Kandy
    Kandy Member Posts: 1,461
    edited November 2017

    Time for an update, been on Ibrance for 2 weeks now. I have felt pretty bad. Seen MO today and they did labs. Labs are way off. Getting blood firstvthing in the morning, hemoglobin has dropped to 5, WBC too low, platelets are down to 48. MO says bone marrow very unhappy and is no longer making platelets. My legs are like jello and I get short of breath just walking through my house. Really just want to sleep. He is changing me from 125 to 75 every other day. Big decrease. He doesn't think I will be able to tolerate Ibrance and is trying to get keytruda for me. He has asked the drug company for compassionate allowance. I'm feeling pretty down, doesn't seem like anything is going to help. Praying for all of you, and hoping y'all are having an easier time

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited November 2017

    Kandy, I’m so sorry that you are feeling so weak. Do you think it would do any good if we all showered the Keytruda people with emails or letters rallying to your side for compassionate allowance. We would all be proud to do it. Thinking of you everyday.

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  • Nkb
    Nkb Member Posts: 1,436
    edited November 2017

    Kandy- I’m so sorry that you are having this reaction. The blood transfusion will make you feel much better. 5 is really low- no wonder you are short of breath just walking around! I’m hoping that the much lower dose less often is tolerated until a new plan comes up. Someone else got really low platelets also and i think is doing ok on a lower dose, but, i don’t remember if they Ultimately stayed on it.

    Hoping you feel much better with the blood tomorrow.

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  • JFL
    JFL Member Posts: 1,947
    edited November 2017

    Kandy, sorry to hear of that Ibrance has taken such a toll on your counts. I hope all goes well tomorrow and that you feel much better after the infusion. Praying for you that Keytruda comes through via compassionate use.

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  • zarovka
    zarovka Member Posts: 3,607
    edited November 2017

    Hey Kandy. Thinking of you. Praying for light on your path.

    >Z<

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited November 2017

    Kandy, I had to switch to 100 from 125 Ibrance as my hemoglobin, absolute neutrophils and platelets were hit hard. My platelets still run in the 60,000 range. Hemoglobin and ANC also low, but acceptable. Don't give up on Ibrance yet, see how you do once your MO adjusts dosage. Hopefully you will get some transfusions to bump up that hgb. Surprise you have energy to post. Hang tough girl.

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited November 2017

    Kandy - so sorry to hear this.  Are you taking a break from Ibrance to give your system a chance to bounce back before the change in dosage?  As for Keytruda -  it's crazy that we have to beg for a compassionate allowance in order to get a treatment.  ARRRGGGGHHHHHH!  I hope the blood transfusion picks you up and you feel much better soon.  ((((HUGS))))

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  • Micmel
    Micmel Member Posts: 9,450
    edited November 2017

    Kandy~Just sending you thoughts of strength and love to let you know how we care for you. I am hopeful they will find your golden ticket with your treatment.Wrapping you in a warm hug. ~M~

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  • Southernsurvivor
    Southernsurvivor Member Posts: 632
    edited November 2017
    Kandy, just wanted you to know I'm saying a prayer right now for some relief for you. Hemoglobin at 5 will certainly make you feel so poorly. I was at 6 at one point and I felt so weak. Hope the blood transfusion and the Ibrance dosage and frequency change will give you a boost. The high dosage of Ibrance can do a number on your blood counts for sure.

    Know you are in my thoughts - we all want you to be able to feel your best. Sending hugs to you today.
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  • artistatheart
    artistatheart Member Posts: 2,176
    edited November 2017

    kandy, I agree with sandibeach. Don't give up on Ibrance yet. I too had the same reaction on the 125 mg. Was walking around a store one day and was just gasping for breath. Went to the ER, it was very scary. We lowered the dose to 75 mg every day and it made a world of difference and still worked for quite awhile. I was back at work with no problem. They will figure it out!

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  • rpoole1962
    rpoole1962 Member Posts: 413
    edited November 2017

    Kandy, I have been dealing with low counts since I was on Carbo. I had to stop Carbo after 3 months due to bone marrow suppression. I was off treatment for 7 weeks tying to get counts back to normal. The are still not normal, but I was able to start a new treatment today. I was having extremely low platelets, hemoglobin, and neutrophils. I fainted in July when I was at my nephews college orientation and had to have a blood transfusion. My MO said it takes a while for bone marrow to rebound. I hope yours rebounds faster than mine did.

    Praying for you!

    Robin

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  • finallyoverit
    finallyoverit Member Posts: 382
    edited November 2017

    Lifting you up in prayer, Kandy. I pray they figure it out soon and get you some relief.

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  • pajim
    pajim Member Posts: 2,785
    edited November 2017

    Thinking of you. I'm sorry you're feeling weak -- Ibrance will do that.

    May tomorrow be better than today.

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited November 2017

    Kandy, hoping that the lower dose combined with the transfusion will do the trick and help you feel better. Thinking of you and sending warm good wishes your way.

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited November 2017

    do you have an update, Kandy? Prayers for you always

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  • Kandy
    Kandy Member Posts: 1,461
    edited November 2017

    Hello ladies, I am feeling better since I got the transfusion but still not well. This is my week off Ibrance, I start with the lower dose next week. I am extremely exhausted, i just fall asleep without any warning.I can only be up for just a little bit. If I stay on my feet too long, I get a distinct pain in my belly and then I start throwing up. After emptying everything I feel okay again. I'm having swelling in my legs and feet. Sometimes so bad I can't get shoes on. Everything seems to hurt most of the time. I have started bruising very easily, in fact, I don't even recall anything happening but bruises appears. I haven't updated cause I hate to be such a Debbie downer. I hope all you ladies are doing well and enjoying the moment. I pray for everyone everyday. Keep the faith that it's going to work out.

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited November 2017

    Hi Kandy - I'm glad you feel a bit better from the transfusion but sorry it didn't do more for you.  I hate that you are going through this.  If you can't stay awake for long then give in and rest.  When you are awake you are awake and when you aren't you aren't.  Your body needs rest.  Don't ever worry about sounding like a Debbie Downer.  We all understand and want to be here for you, especially when you need it the most.  Sending you love and support.  

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  • Snickersmom
    Snickersmom Member Posts: 926
    edited November 2017

    Kandy - I have just joined the Community Forum and have been reading your posts. I just wanted to tell you that I am praying hard for you for comfort and healing.

    My BC issues are really pretty small compared to what you have been going through. I wish I could take your pain away.

    Lots of hugs, prayers, and healing thoughts are coming your way..

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  • zarovka
    zarovka Member Posts: 3,607
    edited November 2017

    Kandy - We're here for the whole enchilda, good or bad. I wish there was better news but I am glad to hear from you. I am also glad that you are sleeping. Glad for the small improvements in comfort. Praying for relief from the rest.

    >Z<

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited November 2017

    kandy, I'm sorry you are feeling so crummy too. I think the dose reduction will make a world of difference in the fatigue and definitely the bruising. When I first started the 125 dose I banged my thigh not very hard on an end table. The bruise I got was as big as a salad plate and lasted for a month! I had never seen anything like it. After they reduced the dose to 75 both the EXTREME fatigue and bruising disappeared. Plus it still worked in reducing my TM's and liver mets for another six months. I pray the same for you and that you are feeling better in no time.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited November 2017

    Kandy, please post. You are our girl, never a downer. Praying for you to regain strength and to tolerate next treatments better

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited November 2017

    Kandy, I am very sorry to hear that although you are feeling a bit better, it's not as much as hoped. I know you're "full up," but am wondering whether you might have asked your doctor specifically about the pain in your belly and about the edema (swelling). If your medical team seems unconcerned, then please obtain a second opinion, as swelling can be indicative of a number of things and is worth checking out. I hope that despite the challenges you are dealing with so gracefully, your days hold moments of happiness and ease from discomfort.

    With a hug.

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  • Iwillwinthisbattle
    Iwillwinthisbattle Member Posts: 1,076
    edited November 2017

    prayers to you!!

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  • Mominator
    Mominator Member Posts: 1,575
    edited November 2017

    Thinking of you, Kandy, and holding you close in my prayers. 

    Hoping you enjoyed your Thanksgiving weekend and had lots of Harper time.

    Madelyn 

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  • Iwrite
    Iwrite Member Posts: 870
    edited November 2017

    Thinking of you Kandy!

    Hope that the swelling and discomfort go away this week. (And the bruising and fatigue) I'm still getting good Ibrance results on the 75mg for almost a year ... lower doses can work.

    Hate that you feel so crummy!Sending hugs!

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