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March 2011 chemo-lounge

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Comments

  • mdg
    mdg Member Posts: 1,468

    So disappointed Stilts that you have had a recurrence. It's hard to hear this. Just know you can always come here for support. Sending prayers to you and Ksmathews as you go through treatment. I hate BC! Why can't they just find a friggin' cure????

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Too many changes to my group! I'm saying a yoga mantra and sending healing comfort to everyone.

    KS-you are amazing to keep doing everything.

    Stilts...we will all be here for you too. It's so late I can't think of any good songs, but I am listening to Lee Ann Rhimes singing "I Believe." Seems appropriate

  • Stilts
    Stilts Member Posts: 228

    Lounge ladies...thanks for your support! Enjoying the long weekend with no md appts...my 2 daughters are here with my granddaughter...the diversion from dealing with this new crap is wonderful 😀 Have had 5 of 15 rad treatments and my first monthly Zometa...final plan at my ONC appt on June 10th...probably the clinical trial to start but as to be expected I'm all over the place with thoughts on that! They said I have "time" to try different treatments if the trial doesn't help.. KS Matthews...you're in my prayers daily. Penny...your attitude is always amazing and you inspire me. Divine...you also inspire me (would love to get your opinion on bone met issues) To all my BC sisters...hoping you have a wonderful weekend

  • Kay_G
    Kay_G Member Posts: 1,914

    Oh geez! I am so sorry to hear about that Stilts and KSMatthews. It just sucks. Sending both of you good thoughts and wishes for effective treatment without side effects.

  • Huskerkkc
    Huskerkkc Member Posts: 471

    Hi everyone...hoping you had a restful, enjoyable, stress-free Memorial Day holiday! I have been staying up on the posts here and with several of you via Facebook (if others want to be Facebook friends, PM me!) but have been neglectful about posting.

    I've been thinking about you often, Karen and Sue...a recurrence is a fear we have all had I'm sure. But because I've been in this group (this is the only one I've really continued with after all these five years!) for so long, I see the power of being connected, the power of having others who understand, and the power of leaning on each other in good times and bad.

    I have come to regard our cancers as a chronic disease...it is just something we will always have to deal with. Some of you right now are facing it right now, but certainly for most of us, it can't be too far in the back of your mind. Whether it comes back or not, just that lingering fear, that little whisper of doubt, makes it chronic in my mind.

    I plan to check in and post more regularly again as I can see it is helpful for all of us. We are not alone!!

    My jukebox selection today (and a LONG time favorite!) is

    Tom Petty & The Heartbreakers – I Won't Back Down

    Well, I won't back down
    No, I won't back down
    You can stand me up at the gates of hell
    But I won't back down

    No, I'll stand my ground, won't be turned around
    And I'll keep this world from draggin' me down
    Gonna stand my ground and I won't back down

    (I won't back down)
    Hey baby, there ain't no easy way out
    (I won't back down)
    Hey, I will stand my ground and I won't back down

    Well, I know what's right, I got just one life
    In a world that keeps on pushin' me around
    But I'll stand my ground and I won't back down

    (I won't back down)
    Hey baby, there ain't no easy way out
    (I won't back down)
    Hey, I will stand my ground
    (I won't back down)
    And I won't back down

    (I won't back down)
    Hey baby, there ain't no easy way out
    (I won't back down)
    Hey, I won't back down

    (I won't back down)
    Hey baby, there ain't no easy way out
    (I won't back down)
    Hey, I will stand my ground
    (I won't back down)
    And I won't back down
    (I won't back down)
    No, I won't back down

  • divinemrsm
    divinemrsm Member Posts: 6,614

    Stilts, I am sorry to learn of the news of your progression. If I am being honest, I will say I am surprised, angry and saddened that you have to deal with bone mets. But really, this is not about me at this time, it is about you. I follow the bone mets thread, so I know you are getting good support and information there. How are you feeling, both physically and mentally?

    There is another thread on the stage iv forum called Life Does Not End With a Stage iv Diagnosis...Really! You might find that inspirational. It is ongoing, but you can jump in any time or just lurk: https://community.breastcancer.org/forum/8/topics/...

    Things that helped me that may help you: simplify life, declutter, spend time doing more of what you want and less of what you feel obligated to do. I've taken some great trips since being diagnosed, but I don't have to live large all the time. It is more about living meaningfully. I turn down social activities that I'm not really interested in whereas before I would do things to keep others happy. Follow your heart more often and try not to let the unnecessary stuff creep in and steal yourtime. I wish you all the best as you navigate the new waters, and I am here for you, always.

    And a hello there to my other March 2011 friends. Husker, we must all have a bit of telepathy as we shared the chemo experience together; I'm currently reading Tom Petty's biography


  • maxineo
    maxineo Member Posts: 199

    Stilts- I am so sorry to hear this! What a blow. It looks like treatment is up and running, and I hope it is kicking that bc to the curb. Sending all good thoughts that I have. Your chemo lounge sisters have your back. Lean on us when you need us.

  • Stilts
    Stilts Member Posts: 228

    With tears in my eyes I am thanking you for being the wonderful sisters you are...amazing that I can feel so much support thru these posts....KS Matthews..gotcha covered in my prayers every day..my treatment plan to be finalized next week...need to make a decision on a clinical trial so I'm stressed over that....off to rad #7 of 15

  • Stilts
    Stilts Member Posts: 228

    Divine...so awesome to hear from you...I will take your suggestions to heart...hope u don't mind me asking...have u had Zometa ?....Ibrance

  • divinemrsm
    divinemrsm Member Posts: 6,614

    Stilts. I don't mind any question you have. I've had zometa since chemo 2011. At that time, I had it every three weeks along with the chemo for six times, then once a month for several years. I now get it once every three months. When I get the iv, I ask for them to give it to me as a thirty minute drip. You can get it faster, but that seemed to give me headaches. Some women even ask for a 45 or 60 minute drip. It also helps to drink lots of water the day before and the day after. I have no trouble tolerating it, and in fact, my son lives in Pittsburgh where I doctor, so I often go out to lunch with him afterwards.

    I do not take ibrance. I have been one of those exceptional responders and have been stable on Arimidex since November of 2011. When the time come should there be progression, I will very much be considering it.

    I know you are asking about clinical trials on the bone metsthread, and my advice to you is that if it is stressing you out too much, don't do it. You want to take care of your emotional health just as much as your physical health. Just my two cents for what it's worth.


  • Stilts
    Stilts Member Posts: 228

    Thanks Divine😀....well change of treatment plans for me...my bone marrow biopsy came back triple negative after being ER+PR+ at original diagnosis...thank u Mr ONC for deciding to check ...so here I am with my mutant cells...no more AI or planned clinical trial for me...hopefully new plan at appt on Monday..

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Stilts-isn't it crazy how it can all be different? I'm sure they will find a great plan for you. Not sure if it is relevant, but the vaccine trial that I did for Ae-37 appears to be more beneficial for triple negatives than triple positive. I think maybe it was designed to be given before a recurrence but not positive where it is now. If it moves forward it would be going into phase 3.

    Divine-you are an inspiration to me

  • Stilts
    Stilts Member Posts: 228

    Long day and I'm exhausted...the plan is to finish rads and start Xeloda/continue Zometa...next step would probably be more Paclitaxel....praying this works...I have too much to live for...thank you all for caring

  • Stilts
    Stilts Member Posts: 228

    Divine...I want to join the exceptional responder club😀😀

  • divinemrsm
    divinemrsm Member Posts: 6,614

    Stilts, are you following any radiation threads? I remember how fatigued I was during the rads period, I had 33. They came after the chemo and lumpectomy, which may have affected how I responded to the rads. I was very gentle with myself during that time and took it easy as often as I could. It helped to follow some rad threads with other women experiencing the same thingto compare notes just as we did here with chemo. You are in my thoughts and prayers.

    Just an afterthought... if you like to read, there is a book called Radical Remission printed a couple years ago that is a very good read. While I don't look at life all perky and positive, I'm too realistic for that, I do believe in feeding the mind uplifting messages, and this book has that.

  • Stilts
    Stilts Member Posts: 228

    Thanks Divine...def feeling the radiation fatigue...original diagnosis and treatment involved 35 tx...this time "only" 15 but I'm feeling it...I'm crabby and tired...my poor husband spends his time driving me to appts😣...he's a rock when I start to meltdow

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    divine...I'm getting that book

  • maxineo
    maxineo Member Posts: 199

    Just checking in to see how radiation is going for you Stilts. And KSMatthews, I hope you are getting some much-deserved rest during your treatment break.

    I think of you all often. Take good care.

  • Stilts
    Stilts Member Posts: 228

    Finished radiation last week and now on my first cycle of Xeloda...14 days on /7 days off...also had my 2nd Zometa infusion yesterday...today I'm an achy mess but I just hope there will be some positive results...ONC follows tumor markers and will have scans again eventually...hugs to all of you

  • ksmatthews
    ksmatthews Member Posts: 743

    thank you ladies so much for your prayers. I'm doing ok with my break. I'm actually a little freaked out! I'm ready for July 7 to get here to get started back. I do a bone scan Thursday, immoraying for no new spots...

  • Stilts
    Stilts Member Posts: 228

    Keep us posted! Praying for good results.

  • PennyCookson
    PennyCookson Member Posts: 356

    Thinking of you both and hoping for great results - hugs

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    I hope everyone is hanging in there and doing well

  • Stilts
    Stilts Member Posts: 228

    Hey chemo lounge ladies...I'm still trying to adjust to the new normal of stage 4...on my 2nd round of Xeloda...got a call from ONC office last week to let me know that my TMs dropped 200 points after one cycle !!!...enjoying some good news for a change. Will see an Ortho this week for my hip pain...I'm determined to get back to the gym or at least take walks but the hip pain is holding me back. Hope you all are having a wonderful summer!

  • PennyCookson
    PennyCookson Member Posts: 356

    That's good news Stilts - hope it carries on. We are all hating that you and Karen have to go through this.
    I will be out of contact for a while (off to the desert camping) but will be thinking of you both.


  • Silia
    Silia Member Posts: 265

    Stilts and KSMatthews - How goes it?! Can't believe it's September already. I pray you are both handling your treatments well. Welcome an update from everyone else too. Life is good on my end. No fun vacations like Penny's desert camping but enjoying that the weather is now cooling a bit. I've been asked to participate in a panel discussion on reconstruction later this month at a Living Beyond Breast Cancer conference. I'll represent DIEP flap and there are another 2 survivors with different recons and 2 plastic surgeons. No other real excitement. Putting Kelly Clarkson's Stronger on the jukebox!

    https://www.bing.com/search?q=kelly+clarkson+stronger&FORM=EDGENA

  • Stilts
    Stilts Member Posts: 228

    Greetings lounge sisters!...I m on my 5th cycle of Xeloda and so far, so good. Will be having scans later in the month and have been pleased that my tumor markers have dropped significantly . Don't know if I ever mentioned that since diagnosis I have "mentored" a few women with BC thru a program at the Cleveland Clinic. When they found out this spring about my progression to Stage 4, they found a mentor for me ! I received a call from a woman with bone mets who has survived 18 years ! I am living one day at a time...enjoying my beautiful granddaughter , family and friends and still working part time. Hoping and praying that research will lead to new treatments that will give me and many others more years to enjoy. Would love to hear updates from all of you. !!!

  • mdg
    mdg Member Posts: 1,468

    Glad things are going OK for you stilts! I hope the scans are equally good. Life is really different here for me. My husband of 12 years decided he no longer wanted a family so we are in the final stages of divorce. I have been tied up with litigation for months. He is fighting me on everything and looks like we will be going to trial. Ugh! The worst for me is he does not feel he should pay alimony (I quit my high paying job to take care of our son after I got BC) and he won't pay for my health insurance (nice hu?) I got court approval to take my son and leave...I moved back to MI and am with my sister. He fought me on that but the judge knew this was best for us and let us go. Life has been really crazy but somehow I am getting through and am happy. I am actually dating again and my son has adjusted to our move really well. I am back to teaching aerobics again too which has been fun. As hard as this is, I have very strong hope for our future. Right now I am trying to figure out how to navigate dating after MX and reconstruction.....no one wants to drop the cancer bomb on someone newer in their life.....haven't quite figured it out yet. Oh well...I am sure I will. Would love to hear how the rest of you are doing..... Maria

  • mdg
    mdg Member Posts: 1,468

    Glad things are going OK for you stilts! I hope the scans are equally good. Life is really different here for me. My husband of 12 years decided he no longer wanted a family so we are in the final stages of divorce. I have been tied up with litigation for months. He is fighting me on everything and looks like we will be going to trial. Ugh! The worst for me is he does not feel he should pay alimony (I quit my high paying job to take care of our son after I got BC) and he won't pay for my health insurance (nice hu?) I got court approval to take my son and leave...I moved back to MI and am with my sister. He fought me on that but the judge knew this was best for us and let us go. Life has been really crazy but somehow I am getting through and am happy. I am actually dating again and my son has adjusted to our move really well. I am back to teaching aerobics again too which has been fun. As hard as this is, I have very strong hope for our future. Right now I am trying to figure out how to navigate dating after MX and reconstruction.....no one wants to drop the cancer bomb on someone newer in their life.....haven't quite figured it out yet. Oh well...I am sure I will. Would love to hear how the rest of you are doing..... Maria

  • PennyCookson
    PennyCookson Member Posts: 356

    Maria - What is wrong with these men with their ridiculous mid life crisis garbage!
    So sorry that you have to put up with more stress. Glad you have your sister and wonderful son with you.
    You are so strong and beautiful, there will be guys out there who would be blessed to spend time with you. I don't think you have to address the reconstruction issue until you have a real bond with someone, just have fun till you find that person.

    Stilts and KS - hope the treatments are kicking it and you are coping with them OK. There is so much research going on now, its seems to have gone up a gear. Hopefully there will be real breakthroughs.
    Hubbie and I had a lovely time in the Simpson desert - they had had rain and there were wild flowers everywhere. Lily would have loved it. We did break down again so the car is now up for sale and we hope to get a more reliable 4WD. Next week I am going walking with my sister to a National Park in Victoria. Aim is to do the 20Km walk to the southernmost point of Australia, and some shorter beach walks.

    I think of you all alot and hope you are all enjoying life :)

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