I'm all jacked up

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kebab
kebab Member Posts: 873
edited April 2016 in Stage IV/Metastatic Breast Cancer ONLY

Whew, this last few months have been a whirlwind. At the end of November, I started a new treatment of Gemzar and Herceptin once a week for 3 weeks and then a week off. By the third week, my platelets were in the toilet and I didn't get Gemzar. Not sure I've ever received Gemzar 3 weeks in a row yet. Last month I started having trouble with high heart rates (like 130, resting). My doctor ordered an echo and my EF is 40%, so I've been off Herceptin for a cycle now. And I've been to the ER 2 weekends in a row this month-- once with unexplained fevers and once with back pain that even Dilaudid shots couldn't control (bone mets in my pelvis, hips and lower spine I'm sure helped with that).

So, now I'm on a fentanyl patch round the clock, not getting Herceptin at all and only getting 2 of 3 doses of Gemzar each cycle; but my scans show everything stable! So weird.

My onc wants me to consider radiation to my pelvis/hips/spine for pain control and to consider switching chemos (though to what, she hasn't said yet). I'm so scared. I feel like suddenly I'm blowing through my chemo options (only 5 months on Gemzar?!) and my pain/quality of life is suddenly spiraling out of control.

How do I get my feet back under me? How do I get back to feeling like I'm living with this cancer, rather than constantly trying to play catch-up with whatever it decides to throw at me today? Any words of wisdom from those who have been through a patch like this? I can't let myself believe that this is the beginning of the end. It's got to be just a blip on the radar or a bump in the road, right?

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  • RosesToeses
    RosesToeses Member Posts: 721
    edited April 2016

    kebab, I wish I had great advice, but I don't.  I think sometimes just keeping on is the best we can do.  But I wanted to send hugs and let you know I'm saying prayers that things go in a better direction.

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  • Kandy
    Kandy Member Posts: 1,461
    edited April 2016

    You have been through a lot since November. I am praying for just a bump in the road. Radiation should help with the pain a lot. If scans are showing stable, maybe the pain control will help you feel more like yourself. Hoping for the best.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2016

    I agree with Kandy's post. Rads can be effective for pain control and once that's taken care of, everything might seem a lot better. Stable is good! My thoughts are with you

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited April 2016

    Kebab,

    Sorry for your pain. I'm in the same boat on Xeloda, AI's no longer working. I did get complete pain relief for bone mets in my lower spine with rads almost 2 years ago and doing well on Xgeva, but my liver is infliltrated with cancer. I hope you get some relief soon. I also feel like I'm getting closer to the end or hospice.

    Terri

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  • diana50
    diana50 Member Posts: 2,134
    edited April 2016

    Kebob

    I really get what you are saying. I've been off gemzar since end of feb b/c of pneuomnia. The antibiotic they gave me destroyed my quality of life. (Leviquil). Pain in muscles and everywhere. My balance is off. I have off gemzar for two months. Scares me. Onc started faslodex hopefully that will slow the cancer down.

    Many thoughts go through my mind. Am I at the end. ? My kidneys are tanking. All this crap "feels like" I'm on my way out. What I have decided is to "Stay in the day". I'm still walking around I'm still seeing my friends. We can still do each day. Maybe the rads would help your pain As we move through this cancer my experience is it just gets harder the longer we live. Treatments may not be as effective or our bodies are so beat up they can't treat us. For me id rather die from cancer then complications from cancer. I wanted chemo when I got out of hospital. It would have killed me. Sometimes our only option to wait for body to heal and Stay in the day. Trust that your body will heal that's what I'm doing and you can do it too

    Consider rads on hot spot.

    Best. Rest. This is all tough stuff.

    Diana.

    Ibmets. Thinking of you I hate breast cancer and what it does to all of us in so many ways.

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited April 2016

    I don't have any advice but just wanted to encourage you. Stable is good but not when the pain is controlling your life. That's where I am. I am in agreement with you that this is just a bump in the road.

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited April 2016

    I am terribly sorry to hear about your pain and hope that radiation will alleviate it.

    Now that you are stable, it may be opportune to consider hormonal therapy if you have been off it for a while. Often ER+ patients on chemo can switch back. And there are other options, such as estradiol if the hormonal therapy doesn't work (it helped several patients become re-sensitized to hormonal therapy) and you can also get tested for Androgen Receptor (AR) and potentially enter a trial. You have more options than you may be aware of! All are in my MBC Guide. You and others are welcome to request a complimentary copy by visiting the top of this page. https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_40

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited April 2016

    kebab, I haven't been in your shoes (yet) but just wanted to lend some support and give you a big virtual hug. My heart gets so beat up with all the stuff the women in here have to go through. I know it is only a matter of time for me when things begin to go south. It is a mental mind F&^%$. All the advice here sounds spot on to me. Tons of people here have had spot rads for pain control and experienced immense relief. Many times the pain itself can drag down your overall stamina. Yes, it is a big blip on the radar but don't let your mind dwell on the worst case scenario. As Diana says try to "Stay in the day". Get through this one day and then the next. Let your body rest for now. You can do this....IBC I am glad Xgeva is working and may it do so for a very long while. Please keep in mind that even if you decide on hospice that is not the end either. Look at Longterm! She has utilized them for some time and is still a very vital presence here. Yes, it gets harder, CANCER is %#@& awful! But all we can do is carry on and find some small slice of joy and hope in every day.

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  • kebab
    kebab Member Posts: 873
    edited April 2016

    Stay in the day. I like that! I'm going to try very hard to make that into my new mantra.

    Thanks for all your words of support. I'll definitely give the rads for pain control some thought, and talk to my doctor about re-trying hormonals. I so appreciate each and every one of you -- your voices are like hands reaching out to hold mine in the dark and letting me know that what ever it is, it will be okay.

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited April 2016

    Oh Kebab...I'm glad you feel our hands reaching out to you....sending strength, love & support. I just so wish I could take your pain away completely. There are so many words that have been shared here that I echo..the most loud to me...stable! I pray earnestly that this is good news that will carry you through some of these toughest times. Whenever someone shares with me...a trivial matter, something like a stupid driver cutting you off, or Starbucks messing up your drink, it's kind of a "Ahhh, been there, done that." The things we share here...tanking white counts, dilaudid not easing pain, a heart not able to withstand meds...those are REAL matters...those are our moments...those are hard. Yet we buoy each other up, we know that we need to keep hope, we find a way to gather and share knowledge. I hope the good advice here helps...sending love.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited April 2016

    Reaching out my virtual hands to you, kebab. Yes, stay in the day, take one step at a time, tackle one problem at a time. Stable means a lot, equals many days and many steps. Rads can make the pain go away. Then you'll be way ahead.

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  • kebab
    kebab Member Posts: 873
    edited April 2016

    Well, first step done. My onc and I have decided on a plan.

    1. Radiation to my sacrum/soft tissue growth -- to stop the growth and nerve compression and give pain relief.
    2. Referral to an oncology pain management specialist, to manage all these pain pills/patches that I am juggling now.
    3. Start on blood thinners to take care of the blood clot in my renal vein.
    4. Continue with the current chemo (Gemzar) since, aside from the soft tissue growth, it seems to be holding everything else stable.
    5. Continue holding off on the Herceptin (for HER2+ cancer) until my heart function returns to normal (another month or 2 maybe?).
    6. Continue with kidney stent on right side, since it is doing it's job and keeping my kidney functioning well.

    I'm going to stay in the day as much as I can. But we'll start with taking care of the pain and hopefully that will be the tweak I need to help me get my game face back on and start living life again.

    Thanks again! Sending you all the love and support I have to give.

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited April 2016

    Now...that sounds like a PLAN! Awesome team work...let the game begin & we're going for a win!!!

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  • Kandy
    Kandy Member Posts: 1,461
    edited April 2016

    Awesome, bet you feel much better with a plan in place. I agree, we are going for the win. Wishing you only the best.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2016

    What a well thought out plan! So glad that you and your onc were able to come up with such a calm and reasoned way forward.

    *susan*

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  • diana50
    diana50 Member Posts: 2,134
    edited April 2016

    sounds great. I like plans. 👍 Good for you to get on it and start feeling in control again.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited April 2016

    Ya kebab! Way to take charge! Keep checking in and let us know how you are doing.

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  • funthing42
    funthing42 Member Posts: 418
    edited April 2016

    Hi everyone,

    Any complaints from anyone taking faslodex and ibrance.

    I'm afraid of ibrance I have no idea why. Strange phobia.

    Finally received it now I need to take it.

    The first loading dose of falosadex made me nauseated.

    Flash back from the TCH in 2014. Wow 2 yrs already.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited April 2016

    sounds like a great plan! And no time wasted coming up with it. GO for it.

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  • AmyJM
    AmyJM Member Posts: 665
    edited April 2016

    Kebab,

    Just catching up around here. Glad to hear that you have a plan in place - I hope the rads help with the pain and that this IS just a bump in the road. I'm keeping you in my thoughts and prayers. I think "staying in the day" is probably a good idea for all of us!

    Terri (ibcmets), Patty and Diana - keeping all of you in my thoughts and prayers too - and all my BCO sisters. I'm so glad we have each other - love to you all!

    Love and prayers, Amy

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