Crossroads

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  • mirryp
    mirryp Member Posts: 41
    edited February 2016

    I don't post often and am more of a lurker. I have always admired your spirit. I did 16 months of ixempra (with avastin) as part of a clinical trial. I guess I'm glad that I didn't know of it's reputation as harsh. I see you and your onc have beat me to what I was going to suggest. I had weekly doses, 3 weeks on, 1 week off, and while not easy it seemed manageable. Was never nauseous and didn't even lose my hair. My onc seemed to think it was the lower weekly dose that kept it from ruining my quality of life. Best wishes with anything you decide. I know how difficult it is and how much courage it takes to be at this crossroads.

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  • nancyh
    nancyh Member Posts: 2,644
    edited March 2016

    Thanks, mirryp, that is really helpful. Hopefully it won't be too hard and, with any luck, it will shrink the tumors.

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

    nancy, Just checking in on you today and sending some love your way. I hope the lxempra works wonders! Take care

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  • AmyJM
    AmyJM Member Posts: 665
    edited March 2016

    Nancy,

    I'm so sorry for all you are going through right now. I hope the Ixempra is effective (and tolerable!) and the April trial even more so, if you should do it. You've gotten a lot of good suggestions from folks here about how to share things with family and friends. My thoughts are with you and your husband as you decide how you want to handle that. I wouldn't worry too much about finding the "right words" though. Maybe preface it with something like "I wanted to let you know where things stand right now" and then just tell them. They all love and care about you and just want to know how you are doing. Keep us posted on how things are going - we all love and care about you too! You will be in my prayers.

    Love and hugs, Amy

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  • kayrnic
    kayrnic Member Posts: 1,708
    edited March 2016

    Nancy....you are such an inspiration to everyone on this board. You have inspired me since the beginning of my journey 4 years ago. I wish you peace and comfort as you continue this tough road. I will be praying for you and thinking of you!

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  • brandall
    brandall Member Posts: 687
    edited March 2016

    Nancy, I hope the low dose Ixempra works. You have long been one of the ladies I admire the most on here. You have always had a positive realistic attitude. I can't tell you how many times I've thought about not working out and then thought of you out walking even when it was hard - a kick in the butt for sure. I'm not on here everyday, but when I do pop in, I always look to see how you are doing. I'm sending peaceful, comforting thoughts your way! As far as telling people, I find putting out posts on Facebook to be the best option for me. I can say what I want without breaking down in tears and word seems to spread quickly, even to those I'm not friends with on Facebook. I think if you have a You Caring page that would be similar. I also think this approach has really helped my husband. He NEVER wants to talk about my situation with people in real life. When I put things on Facebook, his bosses (who I am friends with) see the post and then have a better understanding of what he is dealing with at that moment, and he never has to say a word. Hugs to you and your husband. I hope the Ixempra is kind to you.

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  • kebab
    kebab Member Posts: 873
    edited March 2016

    Fingers crossed that the lower dose of Ixempra does the trick for you and keeps you feeling well too. You are in my thoughts.

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  • nancyh
    nancyh Member Posts: 2,644
    edited March 2016

    Thank you again, everyone, your replies mean so much to me, I don't know what I'd do without you!

    I had my first weekly dose of Ixempra yesterday, so far so good. My onc was very supportive and said we are doing this for quality of life, so the goal is that I feel better, not worse. We will assess each week. She also gave me Reglan to help with stomach emptying because my biggest issue these days is mets pushing against my stomach to the point I can barely eat. I took a dose with dinner last night and it did seem to help.

    She also gave me a referral for Palliative Care consult, which I'm looking forward to. Thanks Bestbird for that suggestion.

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited March 2016

    Thank you for keeping us informed on how you are doing. I wonder if you would be better of to have several small meals each day. Prayers for you and your husband.

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  • steelrose
    steelrose Member Posts: 3,798
    edited March 2016

    Nancy, wishing you great success with Ixempra. I like your oncologist's thinking. You'll be closely monitored, and can pull back or out at any time if things start to interfere with your quality of life. I hope you'll be able to enjoy the Spring, and that you'll feel better and better!

    Sending love…

    Rose.

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

    I hope more issues big and small start to resolve. Keeping fingers and toes crossed for you and Ixempra.

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

    Good to hear, "So far, so good!" It's excellent that your doctor's objective is to improve your QOL and that you are being referred for Palliative Care. In general, people on Palliative Care feel better and (if I recall correctly) live a bit longer than other patients, and I wish you the same result!

    Hugs and good wishes!


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

    Nancy, Small steps that help you feel better may lead to others that just keep improving your situation. I hope things continue to look up for you and palliative care has a bunch of stuff in their cabinet to help. Hang in there and we are all thinking of you every day.

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

    Nancy,

    Good to hear that Ixempera is kind so far. My thoughts are with you.

    Caryn

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  • GrammyR
    GrammyR Member Posts: 702
    edited March 2016

    Nancy - You are in my prayers. Such a tough decision but as you say it IS your way of having some control. A miracle you even survived all those drugs I think. Yes, give yourself a little time off before jumping in to more drugs. So tough on your hubby no doubt.No need to tell others unless you want to. Having hospice will give you both support through all this. The website mentioned in an earlier post may be a good avenue to let friends and relatives know without having to discuss it w/everyone. God bless and sending you big hugs.

    Rene


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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited March 2016

    I had horrendous issues with delayed emptying and reflux and take reglan 3 times a day before meals to aid in gastric emptying and it gave me lots of relief, still does. I am glad Ixempra is being kind to you. I hope this gives you better quality of life. I also have signed up for palliative care and highly recommend it. I hope it also brings you relief. Gentle hugs and lovingkindness your way!

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  • nancyh
    nancyh Member Posts: 2,644
    edited March 2016

    Bon - I just PM'd you, my onc is Kristine Rinn at Swedish. She's the greatest, I can't say enough good about her. The other doctors in her clinic are also excellent, so you have good cross-coverage when she is out (Dr. Rinn is only in clinic Wed, Thur, Fri, so it can be hard to get in with her). She's a breast cancer survivor herself and her entire practice is devoted to breast cancer. She's taken care of me since 2002 (!), when I was first diagnosed with early stage BC, so we've had a long road together.

    Rosevalley - I'm glad the Reglan helps you too, I wish I would have tried it sooner. It does make me sleepy though, hoping I will get used to it.

    Thanks again, ladies for the encouragement and support. Sunny morning in Seattle, the birds are chirping, and I'm feeling better than I have felt in weeks.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited March 2016

    Hi Nancy H.,

    I've not written to you at this thread, because I don't really know you.

    But we've shared posts at other threads, including liver mets where you mentioned reglan. I shared my nausea cocktail with you there and forgot to mention that I use a pill cutter for reglan and zofran. Reglan lasts about 4 hours and Zofran about 12, so I take the R. with lunch and dinner, the Z. at breakfast and bedtime. When I take a larger amount of either, there are unwanted effects.

    Nancy, we seem to be in a similar place in our cancer stories, though I'm on hospice and you continue to pursue treatment and are incorporating palliative care.

    I started palliative care in 2011 and it's been nothing but helpful for dealing with symptoms and side effects, medical decision-making and a necessary perspective. My oncologist of nearly 24 years adores me and will offer the wackiest possibilities to keep me around. Palliative care is called both-and care, because it doesn't make patients choose between treatment and whole person care. It's sort of the best of both worlds, plus a good program will offer life-saving social and familial support.

    A bonus for me was being able to take my palliative care doctor with me when I transferred to hospice in November.

    Much love and healing light surround you, dear Nancy!

    Stephanie

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  • nancyh
    nancyh Member Posts: 2,644
    edited March 2016

    Thanks, Stephanie. I might try cutting the reglan in half and see how that goes. Knock on wood, I actually haven't had too much trouble with nausea lately, so I'll skip the zofran for now, but appreciate the tip as I'm certain it will come in handy at some point.

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  • Milo
    Milo Member Posts: 27
    edited March 2016

    Nancyh -I have followed your posts and you have been an inspiration to me. I am so sorry to hear you are now at a crossroads. I am hoping and praying an new option for you will arise very soon. Best wishes to you and your husband at this difficult time.

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

    It definitely was a beautiful day in Seattle today!  Hoping you feel good enough to take a walk...I know that's one of your happy places.  Love & hugs.

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  • nancyh
    nancyh Member Posts: 2,644
    edited March 2016

    Hi again, gals. Okay, a couple weeks in with Ixempra and here's the latest. It has been awful. Now, it could be bad luck, but I've nearly landed in the hospital twice, but managed to get IV drugs in the treatment center instead, once for pain, once for vomiting. I have been absolutely exhausted too. When the pain got away from me, I thought I was going to die because I maxed out my pain meds and still was at a 9 or 10 on the pain scale, which scared me. The IV pain drugs eventually got things under control and now I am taking my pain meds exactly as prescribed, with the long-acting morphine every 8 hours, additional oxycodone or dilaudid for breakthrough pain sooner than later.

    DH and I met with Palliative Care yesterday and it was helpful. Stephanie - I totally agree, they are "both-and care". They gave me a plan for pain, nausea/vomiting, constipation, etc., plus they gave us documents to help have conversations about end of life. Hubby is sad, but handling things pretty well and friends/family are getting the message about where things stand - just telling people I had a consult with Palliative Care was enough of a signal to help with communication and now they are processing the news each in their own way. My sis-in-law is flying across the country to help out - this is honestly more for her well being I think - she is very emotional, but super sweet.

    So, today, I'm supposed to have my 3rd dose of Ixempra, but I am going to say no. Hubby wants me to get one more data point (markers) just to be sure, so I told him I'd ask about having markers run today and if there's a decline or stabilization, I would consider having another dose next week, but at a minimum I need this week off. I'm assuming I will switch to oral cytoxan, we'll see what my onc says.

    The only wrinkle I can foresee for today is my sis-in-law, flying in today, will be joining me for my onc appointment and I could envision her falling apart since she isn't here day-to-day and hasn't been privy to all the conversations leading up to this point. My onc is awesome, so I'm sure she can handle it, just hoping there isn't too much drama.

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  • Xavo
    Xavo Member Posts: 364
    edited March 2016

    Nancy, so much hope that your blood tests today will show at least stability! Hang in there. April is coming!

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  • JFL
    JFL Member Posts: 1,947
    edited March 2016

    Nancy, thinking of you today and praying for a glimmer of sunlight during this hazy time. Is your pain from your cancer or the chemo?


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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited March 2016

    Nancy I will hold you in the light of compassion and clarity for this new path. I hope your pain is controlled and the symptoms you suffer with are addressed. It sounds like your oncologist, husband and the palliative care team will see you though these rough spots. In the mean time I offer my prayer filled support of your journey. There is brilliant sunshine in the Pacific Northwest and I hope you have a sunny filled spot to enjoy it. Blessings and loving-kindness your way.

    love rosevalley

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited March 2016

    Nancy,

    May the rough edges of your cancer symptoms and treatment side effects continue to be rounded off by proper palliative care.

    May your suffering ease. May you be released from pain. May expanding moments of love and joy embrace you.

    May your healing allies, human and other, come forth and support you in all ways for always!

    Warmest healing regards, Stephanie

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  • nancyh
    nancyh Member Posts: 2,644
    edited March 2016

    Thanks, gals. No chemo today, no drama, it was all very smooth. My sis-in-law, hubby, and best friend all came along, so everyone got to hear the message loud and clear, which was great. My onc could not have been more supportive and she brought up the subject of hospice, which was super helpful to get the conversation going and gave my "crew" plenty of time to ask questions.

    Beautiful day here in Seattle today, got to sit outside and enjoy a little sunshine on my face, which felt great. Thanks again for your support, ladies, you're the best.

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

    You are in our hearts today Nancy

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  • steelrose
    steelrose Member Posts: 3,798
    edited March 2016

    (((Nancy))) I'm so sorry that you're suffering from that nasty Ixempra. But relieved about your meeting with Palliative Care… I hope they will keep on top of things! And glad too that the day went smoothly with your family and bf, as difficult as it must have been for all of you. Sending much love to you tonight…

    Rose.

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited March 2016

    so glad today went smoothly and no drama! Glad your onc was able to communicate the subject of hospice to your loved ones. Hard for everyone, I can't imagine. Glad you got to enjoy some sunshine! It always feels good! Sending love

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