Unfortunately things are going downhill

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited August 2017

    Kandy. Im also praying halaven works. Gentle hugs.

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  • Beverly11
    Beverly11 Member Posts: 443
    edited August 2017

    Hi Ladies. I don't post much but just wanted to drop in and say that you are an amazing group of women who support each other like no other. I used to post and bc.org was a regular thing for me. My husband now does research and posts as husband 11. (rabbit photo) A photo of his real pet rabbit actually. Please know that I pray for all of your every day. I too had a liver biopsy which I tolerated well. The toughest part was of course the anxiety and results. Kandy - I hope you tolerated the biopsy ok. Praying for healing and blessings for all of you beautiful women!

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

    I went to the cancer center today and did get my first treatment of Halaven. They didn't give me any premeds this time. MO kept saying this was usually tolerated very well. So far, I haven't had any trouble, they did want me to stay on Compazine for the first 2 days, to make sure no nausea creeps up. Sure am praying this is the one for me. Hope all of you have had a wonderful day. Lifting you up in prayer, enjoy the moment ladies.

    Beverly, thanks for joining in, this really is an awesome group of ladies isn't it? They truly help me keep my sanity

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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited August 2017

    Kandy, great that you are tolerating your new treatment so far! Prayers that this will continue! You deserve a break!

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

    Kandy - nothing but dull, good news here. so glad things are calming down. keep us posted.

    >Z<

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  • bigbhome
    bigbhome Member Posts: 840
    edited August 2017

    Awesome kandy! Sending you gentle hugs and prayers! Hoping this is the one!

    Claudia

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited August 2017

    Good to read Kandy!

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

    Good morning ladies, I hope everyone is enjoying their day. I have a quick question. I seem to be extremely sleepy. I just fall asleep at the drop of the hat. If I sit down for a few minutes, I just doze off. This is really not like me, I typically don't nap at all. Do you think the Halaven is doing this, or do you think it's from something else? It's sorta scary, I'm afraid to even drive now. Let me know your thoughts. Keeping all of you in my prayers

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited August 2017

    Kandy, I have no experience with Halaven, but I do know that sepsis often causes weakness and fatigue for a prolonged period after treatment. I remember that my dh's doctor told him that he could feel the effects of severe sepsis for several months. He explained that he could feel great one day and be exhausted the next week. Think about how much your body has been through. First of all, there is this "little" MBC thing. Then you have had progression, several infections, surgery, several treatment changes including chemo, reactions to chemo, and on and on. How are you blood counts? As you know, low counts can contribute to fatigue as well. I, for one, think that you are amazing, but maybe your body is just trying to recover. You should, of course, mention your sleepiness to you MO. If he or she is concerned, then they can react now instead of waiting.

    Hugs and prayers, Lynne


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  • Southernsurvivor
    Southernsurvivor Member Posts: 632
    edited August 2017
    Hi Kandy -

    I do have some fatigue on Halaven but not to the extent you are talking about. I'm thinking what Lynne mentioned above. Either your body is recouping from all that has gone on recently or maybe your blood counts are low. I would definitely check with your MO. I don't feel as well today as the previous 2 days, but that has been my experience with Halaven - Day 3 and 4 are the worst for me.

    Keep us updated - sending you hugs!
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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited August 2017

    Kandy, doing ok?

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

    Hello Ladies, I hope everyone is having a great day. I have been doing pretty good. Halaven has been pretty easy with very few side effects. I'm still having trouble with fatigue, still falling asleep if I get still. My lab work looks pretty good, so I don't think that is the reason. I really think Halaven is causing that. I seem to improve right before I get it again. I'm hoping maybe my body will adjust to it. My hair, eyelashes, eyebrows are all starting to grow back. I'm thankful for that, but then I wonder if it's all growing back does that mean it's not effecting the cancer either. I really wish that this nightmare would be over and I would wake up and know it was all just a dream. I'm sure everyone feels that way. But for now we will enjoy the moment, and lifting everyone up in prayers. Keep the faith ladies.

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

    Glad to hear things are settling down for yoy, Kandy.

    Goin' down hill for me though. Head pain, dizziness, spots in front of eyes and not being able to find words is getting worse.

    Will know how bad it is next week after brain scan.


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

    Kandy, I agree with Lynne, You have been through so much lately it takes it toll. Probably a little Halaven, sepsis recovery, ect. I know when all my ascites crud started, between the paracentesis procedures, surgery for the port, starting Abraxane and then the stupid anti-biotic Cepro I just crashed. Even though I've had a break on all fronts for a week plus, I am still struggling to regain my energy, balance and fine motor control. I hope you adjust quickly to the new Tx and it works wonders!

    Lita, Gosh darn it, I hope the brain scan shows an all clear and there is another explanation here. Think of you ladies everyday and say a prayer that we all find the healing we desperately need.

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

    Lita..is there any way your MO can get that scan moved up as it seems your symptoms are progressing since you last posted.

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

    Sandi, this was the earliest they could schedule me in, and it's in another city...the only opening for me in Fremont was for mid-September. I said unacceptable. So I'm going up to San Leandro on Friday, Sep 1.

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited August 2017

    kandy. So glad havelon is treating you well.


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

    Yesterday was pretty bad. I started having the dizziness and eye spots while I was sitting down at my friend's memorial. I used to only get them really bad when I stood up from a sitting position. And I was so dizzy at home, too. All I wanted to do was sit there with my eyes closed.

    No better this a.m. I emailed the MO to see if there's anything I can take besides advil or alleve.

    My eyes are having difficulty focusing, too. I'm really freaking out.

    Have to wait one more day for brain MRI. THEN I'll have to wait for it to be reviewed, then get the team in place, see a neurologist, etc., etc. In the meantime, my chances of having a stroke from the increased intracranial pressure go up.

    I've finally filled out my POLST (physician's orders for life sustaining Tx) and got it notarized. Taking a copy with me everywhere. If I have a stroke, I don't want to live anymore.

    Sorry that this is such a depressing post, but I'm scared now. I didn't even eat dinner last night. I couldn't. I was too upset and concerned.

    Time to take a valium.


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

    Lita, hang in there, we are all praying for you. May there be brighter days ahead for you. Lifting you up in prayer, my friend.

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2017

    Lita, we are with you. Praying for you tomorrow and hoping relief is on the horizon. I'm sorry you are scared. I wish I could take that away from you, but alas, fear is a right of passage for all of us.

    Hugs

    Stefanie

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited August 2017

    Lita, the eye fatigue or whatever you are describing fits me to a T. Xeloda has caused all sorts of eye problems for me, especially if I use a computer or my phone too long. Double-vision, blurred vision, spots, etc. I think you may still be suffering from X side-effects. At least I hope that's what it is.

    I am so sorry you have to have a brain scan. I will pray for great news.

    Amy


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  • bigbhome
    bigbhome Member Posts: 840
    edited August 2017

    Lita - I'm so sorry you are going through this. Hang in there. I am lifting you up with prayer! You are so strong, stay tough! We are all here for you.

    Gentle hugs

    Claudia

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited August 2017

    Lita - sending you love and hugs. Good luck tomorrow with the MRI. Figures it happens on a holiday weekend. Hope you won't have to wait an extra day for results because of that.

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited August 2017

    lita. Sorry for the scary wait.

    Kandy. Thinking of you


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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2017

    Lita, I'm praying that the very scary stuff you've been experiencing is nothing more than SEs from Xeloda. Just know that we are all covering you in prayer and hugs!

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited August 2017

    Lita Im sending prayers and healing thoughts.

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

    MO contacted me. She said try Tylenol for pain (no alleve, advil, or aspirin in case they need to do surgery), and take benadryl for dixzziness...shesais SOMETIMES it helps.

    We will radiate first b4 doing Taxol. So it will probably go radiation first to shrrink it down, then maybe surgery, then taxol for the other mets.

    I'm still freaking out. Thank God I saved some of those valium pills!



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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited September 2017

    Lita, we are all here with you. So sorry that you have to go through this! I pray that you will be feeling better soon.

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

    Lita, I hate that you are in this situation. Like AmyQ, I had big time eye problems on Xeloda. Constant double vision, difficulty focusing my eyes - I had a hard time seeing people 20 feet down the hall at work - people I know well would be waving at me and I would have no idea who it was - and I hated having meetings because it would be hard for me to keep my eyes open and look at people because the backdrop seemed so bright (whether it was or not). Eyes were also red, dry, painful and hypersensitive to the sun and any type of light. I really hope that is it . . . . What helps the eyes a little is a strong, gel-type moisturizer. I started using it twice a day on Xeloda and then used normal, lighter moisturizing drops throughout the day as needed.

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

    Lita, hope your treatment becomes effective asap and you can get some strength back. I'm thinking of you daily

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