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March 2011 chemo-lounge

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Comments

  • divinemrsm
    divinemrsm Member Posts: 6,614

    Greetings, ladies.

    Stilts, I am happy to hear that things are going good with Xeloda. You mention a woman who's been living with bone mets for 18 years and that is inspiring.

    mdg, I'm sorry to hear of the divorce and all the stresses and difficulties that brings. Yet you continue to move forward with living and rebuilding your life; I'm glad of that. You have dealt with much these past 5+ years.

    Penny, your walk thru the dessert sounds lovely. And thanks for mentioning our sweet Lilylady whom I still think of from time to time.

    I continue being stable with latest scans in August. My life seems a bit quiet these days as I do not work and ds is living on his own with a girlfriend. Dh and I have been simplifying things, last summer we helped his 87 year old mom sell her home and move in an apt across from us; this year we made some home improvements to a rental house we owned, put it on the market and sold it. So much work!Glad to lighten the load! We have a trip planned next month to Great Smoky Mountain National Park and surrounding area and very much look forward to it; the Blue Ridge Mountians may be my favorite in all of scenic America.

    Best wishes to all!

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Greetings everyone,

    Stilts and KS-so glad that you are responding to treatment. I just read something on the front page of this site on the number of people with PTSD after treatment. For me, it is so true. I feel like you all are my support group. I have to check in to make sure everyone is hanging in there.

    Maria-what is wrong with men? Seriously not wanting to pay your health insurance? Alimony is bad enough, but health insurance is just wrong. I hope Illinois has a 50/50 split. Take him for all you can get. Sorry if that is bad, lol.

    Update on me-anxiously awaiting the birth of my first grandson. Anyday now! And I swear, I might be more anxious than my DIL. Ever since my BC diagnosis which totally knocked me off balance, I worry more about all the things that could go wrong, that I am convinced no one else can be worrying about, lol. We are so excited to meet the little guy.

    I have my six months appointments coming up. Bone density next week, then in October, onc meeting and the discussion on whether I continue on Arimidex or get to quit. I've been on a tamoxifen and then arimidex for a little over five years now. Kind of hoping he says I can quit, and then worried that he says I can quit.

    So...life goes on...and I am glad it does for all of us!

  • Silia
    Silia Member Posts: 265

    Hello all -

    Divine, we are also trying to simplify in my household - it's a process but feels great to do! Fluff, congrats on your future grandson. That's so exciting. My bone density has gone down again but I'm still osteopenic (not osteoporosis yet). They are going to try and get insurance approval for Prolia injection every 6 months to help with the density. My onc wants me on Arimidex for the full 10 years - ugh! Penny, I also think of Lily when I'm in my garden or see particularly beautiful flowers... Stilts, I LOVE that you have a mentor with 18 years under her belt. So inspiring! The truth is for every one of us (with cancer or not), we never know the hour or the day. It's so important to seize the day. Maria, I saved my comment for you for last. I'm disgusted by your ex's behavior. It's one thing to decide you don't want to be in the marriage anymore - it's another to be so hateful in terms of not giving a fig about your health and future security. Unbelievable. So glad you've been able to soldier through. As hard as a breakup is, I tend to be philosophical that you're well rid of this guy who doesn't deserve you. Sending hugs! Hope others will chime in with their updates.

  • Stilts
    Stilts Member Posts: 228

    Hi ladies...reporting good news from this weeks PET/CT....significant improvement with bone healing and tumor markers down from close to 600 to 58. Xeloda has been very manageable for me and I really feel "normal "....hoping things are stable for a long time! Think of you all often. Maria sending a special hug to you. I can only say the experience with BC has made us stronger to deal with whatever life throws at us. Will keep checking in with you all.....

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Yay Stilts!!! Such good news


    Sillia-I've been on Prolia for a couple years now. According to my late oncologist and this one, the oncologists can almost always get Prolia approved when you are on an AI. Mine was never an issue. We just switched insurance with my husbands new job, so hopefully that won't be an issue. I just had my bone density test this week and all is ok now. I had dropped alittle two years ago, so that is when they started Prolia.

    I should get a Prolia injection when I see my oncologist in October, however, I think I will postpone it to January. My plastic surgeon will order an MRI every two years to check the implants, and I am going to do all that in January so that I can apply it to my deductible for next year and not this year.

    Still waiting for that baby to appear. He is taking his sweet time. Was due the 22nd. They will induce on Monday if he doesn't get here over the weekend.

  • maxineo
    maxineo Member Posts: 199

    Hi Ladies- It's good to see everyone checking in! Stilts, I am happy to hear some good news and also hoping to hear 'stable' for a very long time. Maria- I am sorry to hear your news; that must be terribly hard to wade through, but it looks like maybe the skies are clearing somewhat. I hope you find some peace and adventure in your 'new' life.

    I love all the input on simplifying. My husband and I did a MAJOR purge of our belongings last year, and we felt 100X lighter! There is still more to accomplish, but it has really taken a lot of burden off of me...so much so that I am hesitant about buying things now because I view things as future clutter.

    My health is good other than all of the side effects of treatments. My bone density has tanked and the hot flashes continue. I have 'graduated' from my BS and to once/year visits with my MO, but I still get every-3-month zoladex injections. But I remind myself (always) to be grateful for all that I have.

    I love to hear all of the adventures: Great Smoky Mountains, desert treks, new grandsons...keep the good news coming!

  • Colodisneylover
    Colodisneylover Member Posts: 183

    Good morning everyone! It's been a long time since I've checked in here. I think about you ladies often and am glad to see there is still so much support here. Life has been moving along. Kids are getting older, I'm still struggling to lose weight and my hot flashes won't stop. I have been considering stopping my Tamoxifen, I've been on and off it for over five years and I also had been on other drugs after my hysterectomy. I had many problems with the post menopausal drugs, and went back on it and wonder if I would feel better without it. However, there is always that "what if" scenario that plays in the back of my mind. The oncologist is recommending 10 years on it. I also feel like my oncologist is not really an "aftercare" kind of guy. He was excellent when everything was happening and I couldn't have asked for better care, but now that we are five years out, he sort of lacks the understanding of how this just doesn't magically go away in my mind. Does that even make sense?

    Maria-Sorry to hear about your divorce, but you will be better off in the end. Keep fighting for what you and your son deserve!

    Stilts and ksmatthews-I'm so sorry to hear about your diagnosis. It sounds like you are both very strong, brave, and getting excellent care. You are both in my thoughts and prayers!

  • Kay_G
    Kay_G Member Posts: 1,914

    It has been a while since I checked in, but as others have said, you are all always in my thoughts. Really sad to hear about your marriage Maria. I hope things are going well for you. I know you'll get through it and come out even stronger than you were before. Stilts and KSMatthews hoping treatments are going well for you. Please keep letting us know how things are going. Hugs and thoughts and prayers to both of you.

    Leonard Cohen died yesterday, so I've had this song on my mind anyway and playing it for you Maria


    I've heard there was a secret chord
    That David played, and it pleased the Lord
    But you don't really care for music, do you?
    It goes like this
    The fourth, the fifth
    The minor fall, the major lift
    The baffled king composing Hallelujah

    Hallelujah, Hallelujah
    Hallelujah, Hallelujah

    Your faith was strong but you needed proof
    You saw her bathing on the roof
    Her beauty and the moonlight overthrew you
    She tied you to a kitchen chair
    She broke your throne, she cut your hair
    And from your lips she drew the Hallelujah

    Hallelujah, Hallelujah
    Hallelujah, Hallelujah

    Maybe I've been here before
    I know this room, I've walked this floor
    I used to live alone before I knew you
    I've seen your flag on the marble arch
    Love is not a victory march
    Its a cold and its a broken Hallelujah

    Hallelujah, Hallelujah
    Hallelujah, Hallelujah

    There was a time you'd let me know
    What's real and going on below
    But now you never show it to me do you?
    And remember when I moved in you?
    The holy dark was moving too
    And every breath we drew was hallelujah

    Hallelujah, Hallelujah
    Hallelujah, Hallelujah

    Maybe there's a God above
    And all I ever learned from love
    Was how to shoot at someone who outdrew you
    Its not a cry you can hear at night
    Its not somebody who's seen the light
    Its a cold and its a broken hallelujah

    Hallelujah, Hallelujah
    Hallelujah, Hallelujah
    Hallelujah, Hallelujah
    Hallelujah, Hallelujah

    Songwriters: Leonard Cohen


  • PennyCookson
    PennyCookson Member Posts: 356

    Very sad to hear of Leonard Cohen's death. I know he was 82, but my whole life seems to have been set to his music.

    My favourite:

    Ring the bells that still can ring
    Forget your perfect offering
    There is a crack, a crack in everything
    That's how the light gets in


  • Stilts
    Stilts Member Posts: 228

    Thought I would take a minute to wish Happy Holidays to all! Looking forward to having both daughters home with us. Leaving for Hawaii at the end of the month to thaw out from this Minnesota winter. No new news is good news on the health front...I am still being treated with Xeloda and Zometa infusions...the Xeloda is giving my feet a hard time...Hand Foot Syndrome so I have been pacing myself with shopping and cookie 🍪 baking. Hope all is well with you ladies !

  • PennyCookson
    PennyCookson Member Posts: 356

    Happy Christmas to all our lounge ladies.

    Hug

    Stilts - Hawaii sounds wonderful, we had a few days there early this year and I plan to go back when I can.

    For those of you still undergoing treatment - keep strong in 2017 and be kind to yourselves. If the love and support we all feel for you guys could take action, this hideous disease would be history,
    For those who hope we have put this behind us - enjoy every day, they are all a gift.

    We have a Christmas day with family (from my 86 year old mum down to my 6 month old great nephew) , and then start planning for our trip to India in February - which apparently includes traveling on buses, trains, TukTuks, elephants and houseboats!

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Happy New Year Everyone!

    Catching up on ll the news. Colo...I am also on the annual plan now with my oncologist. Kind of hate it, and I totally understand your comment about the aftercare. I feel that same way.

    I asked hime to do a breast cancer index test to see if I process the AI's well, to help me decide if I will continue another 5 years. He won't do it, as he isn't confident in the results. That really annoys me. Possibly to the point I may interview another couple oncs to see if they will do one.

    He said he kind of believes in the extra five years and that the benefit is 2 percent in distant recurrence and breast recurrence. Just saw another update that may be more significant. He agreed that I could take a 3 month break while I see how the side affects change.

    Pros...it feels like a cloud is lifted from my brain...more energy...less joint pain...very few hot flashes.

    Cons...still can't get to sleep...havent lost a lot of weight, but that is my fault...just getting back to working out...mental stress wondering if I am making a mistake. I hav to make a decision pretty soon.

    Stilts... good news with no news! So jealous about Hawaii. Ad Penny...India sounds amazing...tuk tuks are fun. We rode in a couple in Thailand. We drew the line at riding on the back of scooters, which my daughter did constantly. I was convinced it was just a death sentence, lol, and I didn't go through chemo to die on the back of a scooter in 100 degree weather surrounded by hordes of vehicles, scooters and bikes.

    I plan to head to LA and possibly over to Palm springs in February or March, visiting my daughter the starving artist. Hoping the weather will be nice, although so far, other than dreary, I can't complain too much about temps.

    Here's to a healthy, happy new year for everyone.

  • PennyCookson
    PennyCookson Member Posts: 356

    I saw my onc in August and am on a 1 year plan now. I had quite a long discussion with her about 5 v 10 years and Arimidex v changing to Tamoxifen. She is very good on the whole research thing and at giving me the info she has.

    She reckons there is now significant evidence that 10 years is better, that the best option is 5 yrs Tamoxifen followed by 5 years Arimidex, but that having already had 5 years Arimidex then my option was switch to Tamoxifen for 5 years or carry on with the Arimidex. She basically said the choice is about which side effects I want to risk, Osteopororis or Uterine Cancer (lovely choice) Since my bone density is good and I still have my uterus she was happy with me staying on Arimidex.

    I have alot of faith in her (no bedside manner - but a great medical specialist ) This link is about her: https://www.bcia.org.au/mobile/asm/speaker/domesti...

    But ... it does all depend on quality of life too - the Arimidex is not bothering me too much - and the excess weight is an ongoing problem I have always had to fight.

    Have fun in L.A. fluff

    Happy New Year everyone


  • mdg
    mdg Member Posts: 1,468

    Hey Lounge ladies!


    Haven't been on here in months. Glad to see a few updates. I hope the new year is bringing all good things for each of you.

    As of Thursday, I am divorced! It's finally done. It took a whole year since I filed. A relief. Today is Valentine's Day and I spent the afternoon with my boyfriend....yes, I said boyfriend. LOL! I thought dating post BMX would be hard but not at all. Men all love boobs....they don't care. LOL!

    Happy Valentine's Day to my dear friends! It's been almost 6 years since we opened the lounge. Can you believe that???? Hugs to all! :)


  • deedee2
    deedee2 Member Posts: 78

    Hello ladies!

    I hope you all had a Happy Valentine's Day.

    It's been a looong time since I checked in, but you all are in my thoughts often. I'm glad to know that everyone is moving forward living and loving life. Can you believe it's been six years for most of us....... I too am on the one year plan with my Onc. At first I had seperation issues. I was nervous about not going in for labs every three months. I guess the year plan means we are getting better.

    Stilts and KSMatthews I am sorry to hear that bc has invade your lives once again. I pray your treatments are working for you. It never get easy but you two are fighters, you beat this dreaded enemy once and I am sure you will beat it again.

    Maria, sorry about your marriage, but thank the Lord for family and friends! Men can be such JERKS at times.

    Ladies, I wanted to say hello and I pray all will continue to get better.

    (((( hugs))))


  • Stilts
    Stilts Member Posts: 228

    Just checking in : I had a PET scan last week and everything is stable for now....still taking Xeloda and Zometa monthly infusions. I am heading down to Mayo Rochester this week...kind of my second opinion and hopefully I will come home with some renewed hope. My older daughter just got engaged...so happy for them ! I want to be around for the wedding festivities ! Hope you are all doing well !

  • divinemrsm
    divinemrsm Member Posts: 6,614

    Greetings to you all on this first spring day in March.....the month we all found ourselves bonding on this thread six years ago! Wow, how much we've experienced since then!

    Stilts, I am so happy to hear that your Pet shows continued stability. Congrats on your daughter's engagement. Best wishes for your trip to Mayo tho it sounds like things are going good for you in the meantime.

    Dh and I continue to simplify our lives. It seems crazy that a few years ago I started decluttering the house and I am still at it! We unloaded a rental house by selling it last year and got my 86 yr old MIL to sell her home in the country and move across the street from us; whew! Much easier to look after her and now a couple less houses to tend to as well! Gearing up for a garage sale in May.

    I have finally organized my many photos, made a photo album for my stepson, one for a niece and gave dh a a photo box for his birthday filled with a sort of chronological story in pictures of our 25+ years together. Now I am editing home videos and getting them digitized. A rather extensive project, time consuming and costing a bit of money, but well worth the effort

    Looking forward to milder temps

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Divine... congrats on decluttering. I am working on that too. On photos, I heard about this app called Photomyne. I spent about three weeks easily scanning in photos from albums and putting them in folders. It was so easy and I feel so much better knowing they are there. My hard copies will now probably never be organized, lol.

  • Jules59
    Jules59 Member Posts: 148

    Hi all. I haven't checked in with you ladies in literally years, so you'll probably have to read my profile or be back to the beginning of the feed to be reminded of who I am. Happy to report all is going well with me, and I have to laugh when my oncologist tells me I'm very lucky to still be here!

    I've been very busy enjoying life, traveling with the husband, horses and my new little Pomeranian, Rascal. We spend winters in Florida, and go where we please the rest of the year.

    I finally finished all treatment last November, including the dreaded Femara. Feeling almost normal, although I don't know if some of my minor complaints are due to treatment or just normal aging. I've put on a few pounds, and looking back at everything I've been through, not stressing over it too much.

    Hope everyone is having a wonderful day. I'll be going over the feed to catch up with those that still write in.

  • Stilts
    Stilts Member Posts: 228

    Good to hear from you Jules and all the ladies checking in! Continued stability in my world...enjoying it while I can. I remember after original diagnosis finally getting to the point of NOT thinking about BC the minute I woke up in the am and eventually going for a whole day. Now on to round 2 and Stage 4 I can finally get my thoughts off BC and enjoy life.

    Happy Spring to all of you...enjoy every day

  • PennyCookson
    PennyCookson Member Posts: 356

    Hi Jules
    Great to hear you are doing well. Our stages were pretty similar , and I remember being told my chances were poor - so clearly we are both very lucky to still be around and enjoying life. Glad you have been traveling. I am still working, business is going well - I have around 20 consultants working at the moment, but get alot of traveling in too. We are off 4WDing with our tent and some friends in May for 3 weeks. Off down the abandoned Gunbarrel Highway - pretty much in the middle of nowhere. I think in 3 weeks we will only have access to a loo on 4 or 5 days, the rest is very much out bush camping.

    Then in July we are going to Europe to celebrate our 40th anniversary.

    Divine - so glad things are going well for you - the whole decluttering thing sounds like a great approach to life. You are an inspiration.

    KS and Stilts - here's hoping for continued stability and wonderful lives - we are heading into autumn now, but its still 30 deg here tomorrow although I think that's our last warm day.

    Think of you all often xxxx


  • ksmatthews
    ksmatthews Member Posts: 743

    Hi ladies! I haven't checked in for quiet some time. I have done chemo and immunotherapy. My last scans looked good! Bone mets were gone, but still had some small spots in my lungs. I go back to onc in August, will repeat scans and most likely start Cisplatin. I am not looking forward to it! I have had a few months off from treatments, and I am just now starting to feel like getting out.

    I have also decided to leave work and try to get permanent disability so I can use all my energy to fight. It is going to be difficult financially, but i feel like it's the best choice.

    I hope all is well, and I will try to keep in touch more often.

  • divinemrsm
    divinemrsm Member Posts: 6,614

    ksmatthews, it is good to hear from you. I am glad to hear of the good scans and wish you continued good results with the August scans. All the best to you as you start Cisplatin.

    Quitting work is a big decision. I stopped working two years ago and it was the right choice. Since being dx with mbc 6+ years ago, I have continied to assess and reassess many areas of my life to see what is working, what needs adjusted, what needs to be done with. I would definitely say all of that leads to less stress and more quality in my life. Sometimes it has required great effort on my part to make changes and simplify, but I find it is worth it. My life is very full, and I do much more of what I really want to be doing.

    Dh and I had a huge garage sale this spring. It was ridiculous the amount of stuff we no longer needed. Yet my house is still filled with plenty of things we love and things we use. We bought a pool pass this summer for $50, very cheap! The pool is seven blocks from home and there is adult swim from 10-12:30 every day. Wow is that heavenly. I go often, we go after dh comes home from work and on weekends. Its made for a very nice summer so far.


  • Stilts
    Stilts Member Posts: 228

    Great to see posts from you both...KS Matthews...you're still in my prayers !!! The battle goes on...still stable on Xeloda...my next scans are in September but I have decided not to get anxious about it...yet...I feel well...don't have the energy I used to but I'm not getting any younger !!!. My older daughter is getting married next June in L.A. so I'm determined to be around for that !!! I think of our group often !!!

  • mdg
    mdg Member Posts: 1,468

    Great updates. I have not been on here in months....funny how life goes on 6 years later. I took my son on a month long european adventure and we just got back a week ago. It was a trip of a lifetime! We had a great time...3 weeks in Italy and we split the 4th week in London and Paris. Amazing time with my son. This is something I always wanted to do and I was so glad to do it with my boy! He turned 11 when we were in Venice.....crazy! He's all grown up!

    I stopped taking tamoxifen. My new MO did a test on my original tumor and it came back saying I had a 4% chance of recurrence so I am taking a break from tammi.....I feel so much better not on it! I hope all of you ladies are well. Hard to believe it's been 6 years!!!

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Hi all!

    I haven't checked in in several months either. Glad to see we are all hanging in there. I have to find ANOTHER oncologist. After I lost my first one due to a sudden unexpected death, my new one is very reluctantly retiring as he has a genetic eye disease that he inherited that is suddenly progressing and will eventually lead to blindness. Made my complaints seem pretty petty.

    He told me there is a two percent benefit to my continuing on arimidex for five more years. And that I should weigh it against the other side effects of bone and heart issues. So currently I have the prescription and am picking it up, but am still on a break for taking it. I feel much better not being on it, so I just havent popped the little pill again yet.

    MDG your trip sounds fabulous!

    So nice not to log on for the first time in months and not see anything shocking so far. Have a wonderful rest of the summer!

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    well I am back st it again I think. Noticed a lump on my collarbone/neck. Had a ultrasound, results came back today for a indeterminate solid nodule. Biopsy is Monday.


    I feel exactly like I did last time when they couldn’t find anything...I knew it would be found.


    SickTired

  • Stilts
    Stilts Member Posts: 228

    Fluff: will be thinking of you Monday...please let us know how you're doing! Xeloda is keeping my bone mets under control and I am learning how to deal with the side effects. Would love to hear updates from others in the lounge

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Results are below. None of it is good and it all points to a recurrence in the supraclavical lymph node, not good.

    Findings: Ultrasound of the neck is performed. There is a relatively hypoechoic solid-appearing lesion corresponding to the palpable abnormality. This measures 1.9 x 0.9 x 1.2 cm. The nodule is inferior to the thyroid gland. The etiology is indeterminate.

    Hypoecjouc-not good

    Size-taller and thinner not good

    I am pretty sure I know what the finding will be. I gave already made one onc appt. and am looking to interview another one. I want to make sure I don’t get somebody who chalks me up to palliative care

  • Stilts
    Stilts Member Posts: 228

    Oh Fluff...I'm truly sorry to hear your news😔...I assume you are headed for a biopsy so you know for sure...please let us know the results. I know first hand how fear of recurrence or confirmation of those fears can really knock the wind out of you! We are all strong women after all we have been through with this BC crap and have all picked ourselves up and continued enjoying life...that process happens with recurrence too. You are in my thoughts and prayers...please keep in touch

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