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mets to lung

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  • justagirl
    justagirl Member Posts: 633
    edited April 2013

    saralou: thanks for taking the time to write. I did look at your site. I am not going all vegan or organic but have cut my diet cokes down to a half one a day, and my intake of snickers bars to a miniature one every once in a while as a treat. My other treats are natural lollies made with no preservative, additives, etc. Even my dog likes them. I make most of our food, including pasta sauces and deserts, so I know what goes into them and go for fruit and veg in season. We eat some meat but I'm not a big fan.

    I'm glad to finally meet someone who has lung mets like me, but wish we could of met under different circumstances. When I think of how my CT scan looked, it was like hundreds of tiny pin pricks everywhere. Somehow the radiologist pegged them right away as BC mets. ???? and without a biopsy as the two measurable ones, like yours are too small to biopsy.

    It is rough to know my only options are the oral anti estrogen tablets, or some sort of chemo tablet or IV chemo.

    I just feel like I should be doing something but you are right. I need to stay healthy, in mind and spirit and learn to enjoy each day and not let this take the joy out of my life. I'm going to have to work on that and learning to laugh again. I was only diagnosed with the mets January 21, so it is still relatively new in my mind. We have only told about 6 people, which include my husband and 19 year old son. Telling my son was the worst of the worst. He totally lost it with depression and anxiety when I had the BC initially but I had to tell him. But this time I said I feel fine. I am fine. We found these by a fluke and we will go on with our lives. I will just have to see the oncologist again on a regular basis for checks, which right now are longer inbetween due to my CA15.3 dropping from 80 to 56 and my CT being the same.

    I used to be a triathlete, in fact was training when I first found the breast tumor. Now I can't swim, bike or run. Can't rotate my right arm around and over my head due to the LD flap for my radiated breast side, and can't run or bike thanks to the loss of calcium in my lower spine which has given me 3 compressed discs. But I am back on my treadmill, walking fast as I can. Am building up from 30 minutes a day back to the 1 1/2 hours I did before this lung stuff. And that's how I think of it 'stuff'

    We have a huge garden and live on 8 acres and nothing makes me happier than to be outside working. You are right. I just have to get up and on with my life.

    Thank you for reaching out to me - it's not that my hubby doesn't love me or my two BFF's but it's not the same as having someone here who completely relates!

    You are my angel today!

  • Carolben
    Carolben Member Posts: 265
    edited April 2013

    Hope this thread is reviving, just found it too.  Also have lung mets - am triple neg so only chemo an option and am on Taxol now for the last 3 months.  Having a scan May 9 to see what's happening in there and if the Taxol is working.  Mine were size 7mm biggest down to 3mm, in both lungs; and I'm hoping they are responding.  The waiting to know is the hardest.

    Not feeling sick, just really have some exhausted days, fatigue is getting more, but so long as I'm not feeling sick I can handle the fatigue!

    This is a rough ride and I'm so grateful I don't have to do it alone

  • sarahlou1967
    sarahlou1967 Member Posts: 28
    edited April 2013

    Justagirl and carolben, if you ever need me for anything at all just drop me a private message, it might take a while but I will respond. Always remember you are not alone in this we are all in it together I'm already 2 years down the line and feel fine, you will to, chemo really does work as well as the hormonals so please take heart and have hope. Sending you both lots of love and light Sarah xx

  • justagirl
    justagirl Member Posts: 633
    edited April 2013

    Thanks saralou.

    carolben: sounds like we are dealing with the same new diagnosis. I just thought at 60 I had gone through all I had to do to live and it was dusted and done, but always in the back of my mind fearing mets, and BANG, mets.

    Heck I'm only 60 now, and do not appreciate sometimes just not feeling right or being tired for no good reason. I'm the person who was always on the go and had a list of things to do every day. Now, if I'm tired or feeling off I relax and rest and read and nap.

    Feel like the lung mets, even though on the oxygen pulse oxmetry machine show me at 98%, I sometimes feel like my lungs just aren't giving me 100?  Maybe it's the change in January from Femara to Tamoxifen.

    Oh well, whatever, I going to keep on fighting after my next nap!

    My son thinks it's funny I refuse to cut my hair now that it's past my shoulders again. It was this length when I lost it all to the first round of chemo so in my mind I think if I have a few inches cut off then I'll hex myself and the chemo will take it all! I know - silly. Hairdresser has promised to just tip the ends.

    Now I've got a couple of dents in the top of my right implant but I don't even care. There are bigger things in life to fuss over than how my boobs look.....and my son prays I will stop wearing a bikini at the beach and only do it at home!

  • alesiasmith12
    alesiasmith12 Member Posts: 1
    edited April 2013

    This is my first time on here. I was first diagnosed with breast cancer in 1995, then it went to my L lung in 2005. Now it has returned to my R lung in 2013. What is a navelbine? Right now I'm on Arimidex and Faslodex shots. How will I know when my time is getting closer? Scared.

    alesiasmith12

  • bhd1
    bhd1 Member Posts: 173
    edited April 2013

    navelbine is the name of a chemo drug given by infusion for cancer

  • justagirl
    justagirl Member Posts: 633
    edited May 2013

    aleslasmith - sorry it's taken me so long to respond to your question. I don't come here that often. I understand you are scared. I am scared too.

    You ask how you will know when your time is getting closer. Closer to what? I am assuming you mean death, but I would be out of line to try and guess or assume what you were thinking when you wrote this.

    Please respong or PM me.

    As is,

    Debbie

  • GatorGal
    GatorGal Member Posts: 750
    edited May 2013

    Alesia,

    I was diagnosed with lung mets in 2008. I'm celebrating 5 years this month and am feeling good, traveling when I can, spending time with family and friends. Although I spent some time getting prepared for the "what-ifs" I am finished with that now and concentrating on living. I have been on aromatose inhibitors (like aramidex), faslodex, xeloda, and am now on my 4th chemo. My doctor keeps telling me there is plenty in the arsenal. I understand where you are right now, honest, but as time goes on and you adjust to your treatments, things will start to look up. There are many women on the boards who have been around for a very long time. My lung mets are now stable (not growing) and I'm hoping my next scan will show NED (no evidence of disease). NED doesn't mean cured and it doesn't mean I can stop chemo but it is a very good sign that the chemo is doing it's job. And who knows, maybe a cure is just around the corner. I'm 62 and won't give up!! Glad to see this thread is active again!

  • justagirl
    justagirl Member Posts: 633
    edited May 2013

    Glenna: I for one, am glad you have dropped in. There must be more of us out there with lung mets and personally, I need all the support I can get and advise and histories, the good and the bad. Congratulations on your 5 years this month. I was just diagnosed with my mets in January and the oncologist said due to the mets showing up so early after my initial diagnosis (almost 3 years) - well, that wasn't good. I have no idea why. Had a DM, chemo, rads and was on Femara and now due to mets changed to Tamoxifen. My next CT is the end of this month with a CA 15.3.

    I was so mad when I found out about the mets but that serves no purpose. I asked the oncologist how long I could live and she said 3 to 10 years. I almost fell off my chair. I truly plan on living for a long long time, and I realize I will have ups and downs, chemo again here and there along with other drugs but am hoping since the mets were discovered while they are pinhead size but too many to count in all the lobes that the early detection will work in my favour.

    I'm now 60 and I'm with you on not giving up. I want my life to be as it is - enjoying my husband and son, gardening with my dog Jaki at my side and enjoying the peace our property gives me. It may seem like a boring life to some but it suits me just fine.

    I have no problems breathing but now do take precautions like wearing a mask when doing dusty things, getting a flue shot and avoiding crowds and people coughing. Also am sure to wash my hands before I eat when out.

    I just wish some of the other 'long timers' would chime in on this thread and give us newbies some inspiration like you have.  Some people think I am in denial of my diagnosis but I'm not. Every day I stay mad or upset, breast cancer wins as it takes the joy of the day from me. And I like to win!

    I only wish I hadn't had to tell my 19 year old son, who is away at university because it was so difficult on him when I was first diagnosed 3 years ago. But I did as I told him I would always tell him the truth. Now he calls me at least twice a week and was coming home most weekends since then, even though it's a two hour drive each way. He said he couldn't come home this weekend as he has a big paper due and I said then do it but I know he thinks I will be upset he won't be here on Mother's Day. I told him just knowing he loves me is plenty enough for me! And every time I end a conversation with him or even an email, he says 'I love you Mum' and I know it comes from his heart.

    Cancer has made me stop and enjoy all the little things in a day. The blue sky, puffy white clouds, the sound of rain hitting the tin roof at night, having a cup of coffee sitting on the porch steps in the morning and looking out at the horses in the paddock.

    Life is good. I just may have to work a little harder at times to keep it this way!

  • GatorGal
    GatorGal Member Posts: 750
    edited May 2013

    Okay, lung metsters, chime in! We've got some newbies here who would like to hear from you!



    Debbie, I hope you have a long run on the tamoxifen. I took it for about 5 years after my first bout with BC in 1987. I had chemo induced menopause (best SE of all) when I was 38. I really didn't have bad SE's though some mood swings (menopause or tamoxifen?) and of course, weight gain. I've gained about 40 pounds since 1988 but everyone says I carry it well! Of course I've gone up and down a few times and changed sizes a few times as well, but hey, I'll take weight gain any day over nausea!! After tamoxifen I was on femara for quite a number of years. I think I did have a break between the two but it was so long ago. Diagnosed with mets about a year after stopping the femara. I often wonder if I had stayed on the femara would I still have gotten the lung mets. Does no good to wonder at this point. I put my energy into having as much fun as possible.



    It sounds like you have a lovely life! I just came back from spending time at my mom's in Florida. They have 10 acres next to my step-sister who has another 10. She has 6 horses and it is nice to sit on the swing and watch the horses in the field. Having that much land would be too much work for me. I used to love to mow and work in the garden but I do have breathing issues now and just can't do it anymore. Taking a slow, easy walk is more my speed!



    Your son sounds like a wonderful young man and you sound like a very proud mom. It sounds like he comes to see you whenever he can. How far away is his university?



    Alesia, how are you doing? Sounds to me like your cancer is pretty slow growing though I'm not a doctor or nurse. It didn't show up in the other lung for 8 years. I would think that was a good thing. Sounds like you are getting good treatment. I know how scared you must be, but believe me, you aren't going anywhere anytime soon. You will find lots of information on the threads and lots of support. Because you are so new, you might want to start your own thread. You will probably get more responses that way. Sometimes people forget about some of these threads that have been around awhile. Also, if you read something and want to ask questions of someone, click on their name and you can send a private message. We are here to help you so don't be afraid to ask!! Hugs to all!

  • justagirl
    justagirl Member Posts: 633
    edited May 2013

    BUMP - those with lung mets please chime in to give us newbies some guidanceCool

  • Reality
    Reality Member Posts: 532
    edited May 2013

    Hello to all - I was diagnosed with mets to lungs last fall. I participate on several other great, supportive threads. I was so glad to find this one and will definitely be joining you. Its 4 a.m. in upstate NY and I am not feeling well, so I will sign off for now, with hugs to all. 

    Sherry

  • Reality
    Reality Member Posts: 532
    edited May 2013

    justagirl - Right there with you! I am ANGRY!. I honestly was not angry when my bc was first diagnosed - I was scared, but positive. I was "ready to move on" - "put it all behind me", just as all the med profs advised me to do - then "Wham!" - lung mets....

  • Jill49
    Jill49 Member Posts: 25
    edited May 2013

    Barb - I am 64, was diagnosed Stage IV in 2008 with bone and lung mets after 12 years from first DX. I am going on 5 years and still have few, if any, symptoms from the cancer, only SEs from the drugs.

    I've been on aromatase inhibitors (femara for a year and a half and aromasin)  I've been on Xeloda for 3 years with good results!

    I've been able to carry on with living and like Debbie and Glenna and find joy in so many things I took for granted before.  I still work, travel, play and laugh.

    There are times I feel scared, disappointed, sorry for myself and everyone else who is suffering, but I still have a life to live and refuse to let these feelings take over.  I have so much to be grateful for and try to celebrate every moment.

    Wishing you and everyone else here all the best.  Warm thoughts and lots of hugs.

  • justagirl
    justagirl Member Posts: 633
    edited May 2013

    Hi Reality - thanks for joining in. I know I need help in dealing with all of this.

    Like you, when I was first diagnosed with BC I was scared that my husband and son would have to watch me  suffer a slow death. I didn't mind so much dying - I was just worried about how my husband and 16 year old son would be. After getting my pathology report and talking with the oncologist and setting up my chemo and rads and the Femara to follow, I became positive and was like 'I can do this' My oncologist said then I had only a 5% chance or recurrence which the following year she said was even more remote after the double mastectomy.....but after I finished the rads I started to get anxious about mets, would have nightmares, and so scared I would wake up in the morning and actually pull the covers over my head and stay in bed until like noon. The more and longer I did this, the more I got anxious about things I used to do in and out of the house and on our property that weren't being done.

      I think I was having a nervous breakdown. My new GP whom I got about a year ago finally said I shouldn't be suffering like this and we debated if I was anxious or depressed. Anxious. She prescribed an anti-anxiety med daily and I've been better ever since.

    Had been on the anti-anxiety med about 3 months and was reducing the amount on my own and being comfortable, getting up easily in the morning and getting things done. I caught up on things like going to the dentist, having my hair cut and coloured, buying some new clothes as I had lost so much weight my husband said he couldn't find me in my clothes!

    Then bang, while doing a CT of my liver, as the Femara had elevated the enzymes and my Dr just wanted to check everything out as my CA 15.3 was 80, the tech accidentally got some x-rays of the bottom of my lungs. Then the lung CT followed.

    Mad, I was so mad. If BC was an object, I would take a sledgehammer to it and beat the sh_t out of it. And yep, everyone told me, like you, 'you don't have BC anymore so get on with your life'. My husband thought I shouldn't come on here anymore. I needed to forget BC.

    Ha, yeah, like we can just snap our fingers and forget it.

    When my Dr told me about the lung mets we both cried and then she wrote me a prescription doubling my anxiety medication. Wow - I think the stuff is magic!

    For me to be mad about the mets makes me productive as I am going to just go on living my life, take whatever treatment I need to and keep on living my life.  So what I am Stage lV - terminal. All of us in this world are 'terminal' and no one, no one really knows when. I wasted almost 2 1/2 years of my life being upset about the initial BC and BC is not going to make me waste any more of my wonderful life.

    And some day I will tell the story of what I did do with my sledgehammer (I was a bad bad girl but it was cathartic), made my son so mad he called me a 'crazy cu_t' (he is a very polite boy) and scared my husband almost to his grave. Another time.

    Just don't  let me get my hands on a sledgehammer when I am mad.

    Reality - hope you are feeling better in the morning............

  • Carolben
    Carolben Member Posts: 265
    edited May 2013

    The scariest thing I heard was "mets to lungs, stage iv"

    Been on Taxol weekly 3/1 for 3 months and had a scan on Thursday to see if it's working, what's going on in my lungs now.  Will only see onc to discuss the scan on Tuesday when I go for chemo.  It's a long time to wait, that's the hardest part is the waiting!

    Thanks for a reminder that it's ok to get really, really mad at this monster - it certainly was not in my plan to get this!  And I really, really don't want it.  So I'm really going try kick its ass!  The anger can be used positively and it's always healthy to get it out.

    Thanks for the longtimers for the hope you bring - statistics are one thing, real people 5 years down the line, well that's a whole nother thing, thank you!

  • Tree3
    Tree3 Member Posts: 45
    edited May 2013

    I'm not sure what to say as I consider myself new to this stage four cancer, even though I was diagnosed with it last aug. of 2012. 9 months. I'm 73 years young, active, love life, when I found myself feeling anxious and depressed for several months. Well, who wouldn't feel that way after losing husband and then a year later my son to cancer. Stage 4, melanoma. No cure. But 5 years had passed and I assumed my grief was cat hing up with me. Perhaps it was.

    Anyway I found myself very ill for two weeks, each day rising and telling myself I was getting better. After about ten days I found myself having shortness of breath, so much so, I could barely breathe. At this point my other son, who lives about an hour or so from me came and took me to my GP, who listened to my lungs and said it seemed like my left lung had collapsed. Is this serious, I said. Serious enough to go to the ER, he said where it was discovered tha I had over 2 and a half liters of fluid in my lungs. I was kept in the hospital and tested for a week. Finally, they told me and my son that I had stage 4 breast cancer to spine and lungs. How long do I have, was my first question. 8 to 10 months was the answer. My son and I were both shocked. I thought I was too full of life to die. But I think that given my age and the fact that it was in my lungs my days were numbered.

    Boy, were they wrong. I have been on Aromasin and faslodex since

    Sept of last year and I can honestly feel myself getting better with each month. My timer markers come down a little each month( not a lot but they do go down). And here's the clincher. I feel great. No side effects from meds, no pain in spine or lungs, no loss of appetite or energy. Cancer? What cancer? I just returned from a glorious trip to France where I kept up with everyone. And I'm scheduled for a ct next Wed.

    I am not fooling myself. I know I have a very fast growing cancer that can turn on me like a dime. And I know the meds,which are doing wonders, can stop working.

    But for today I'm happy. I do not grieve. I rarely have a pity party, but I do sometimes.

    And I'm planning to move to a home in a community near my son, because its something we both want. And I look forward to it.

    My life is not perfect., but I'm still here kicking up a storm and loving it.

  • sarahlou1967
    sarahlou1967 Member Posts: 28
    edited May 2013

    Yay Tree sounds like you have the right attitude to this thing, Im pretty much the same as you with mets to lung but am only 45 and have been living with this for 2 years now. Keep on keeping on and live life for the moment xxx love and light to you sarah xx

  • Tree3
    Tree3 Member Posts: 45
    edited May 2013

    Thank you so much, Sarah Lou. But did I mention that no matter how great I feel I still live in fear. Always, fear of the unknown. So, we really do have to take it a day at a time. I count my blessings usually. Some times I forget.

    Happy Mother's Day everyone.

    Teresa

  • justagirl
    justagirl Member Posts: 633
    edited May 2013

    Carolben and Tree: glad you have chimed in here. Makes me feel not so alone.

    No, this wasn't in my plan of life to get breast cancer at 57 either. Hell, I lead a good life, free of stress, have a wonderful husband and son, live on acreage in what I call 'my heaven' and have my loving dog Jaki always by my side. Two dear Bff's and a healthy life of triathlons, eating well, no smoking or drinking and always clear mammograms. Then bang - my life is threatened and not only do I get BC three months after a clear mammogram, but it's an aggressive type and already invasive. Clear lymph nodes did not comfort me. Neither did having chemo, rads or being on Femara. I was anxious from the get-go that this sucker would invade my body and it happened.

    Luckily about 3 months before I got the lung mets diagnosis, my GP felt my anxiety level was not good for me and I shouldn't have to struggle with each day so she put me on a strong anti-anxiety pill. Here in Australia they must consider it bad, as she can only write me a prescription for a weeks's worth at a time, which she does. So good I was on it when I got this shocking news - so shocking I hardly cried when my GP first told me. Then on to the oncologist who said I had 3 - 10 years to live. Crap. Oncologist changed me from Femara to Tamoxifen and said they would do another CT and blood tumour test in 6 weeks to stage my progression. Great, and in two weeks I was due to go to Kauai with my son for a much looked forward to holiday visiting friends I know from living there. Oh mad does not quite contain how I felt. Rage is even a better word.

    I could imagine these mets, which are sprinkled all throughout my lungs and are tiny and numberous growing as fast as my original tumor grew and that in three months I would be dead. So going on the vacation was surreal. I only told my BFF there that we stay with before we went and she broke down. I said this is not to be mentioned to anyone and if you want to talk to me about it, not where my son can hear.

    So I had the 6 week CT and much to my surprise, the mets were the same size and had not increased in size and my tumour count was down to 56 from 80. Still mad, but raging is gone. At that point I decided I was just going to get on with my life too, do whatever treatments the oncologist said, keep taking my anxiety pills (which my Dr doubled with this diagnosis) and live my life.

    I refuse to have BC take another day of my life away - of me afraid to face the day when morning comes and hiding under the covers until noon. Of being sad. I prefer mad too!

    Tree, I admire you perseverance and love of life and living it to the fullest and be dammed with any doctor's time frame. Go girl go!

    And Carolben, my Dr or oncologist has never mentioned stages to me, but as a nurse, I know I'm stage lV, but I plan on living a long life and taking whatever treatment deemed necessary. My oncologist said chemo 3 or 4 times was possible, so bring it on if appropriate.

    I have another CT and blood test the end of this month and an appointment with my GP the next day, as I would rather here from her first what is going on. A week later I see the oncologist. With my GP I can laugh and cry and talk. I don't need a therapist as I have her. She, my GP, had BC 20 years ago, with young children, a practice and an indifferent husband who just didn't seem to care. She gets me in a way no one has. Even the therapist I saw for months weekly at $150 a pop, which my insurance didn't pay for.

    Funny, I lived in fear of mets from the time I finished my original therapy and that is what caused my anxiety and like froze me from doing anything and then I would get depressed as I had done nothing all day. Now, thanks to the medication, I have no anxiety, just healthy anger and even that is fading. Why waste my energy on anger. BC is not going to take away any more of the beautiful days of my life.

    Tree, I do understand you living with fear. Your lung mets were discovered way later than mine. I am asymptomatic and it was by a fluke they were discovered. Oncologist said it is rare and unusual to discover lung mets at my stage - like for you - it';s usually found when one has breathing issues but that doesn't mean the drugs and treatments can't stop it's progress or even reverse some of it.

    We have to all live in hope and stay strong.  Sarah, your strength two year down the road is inspiring!

    I need all of you to keep me on an even keel.  Thank you!

  • Tree3
    Tree3 Member Posts: 45
    edited May 2013

    Well, justagirl, we are here for you. I don't blame you your rage. But I made a decision that even though I might die, until then, I was going to be happy. I was going to laugh, love and enjoy. That was a conscious decision right from the beginning. I could not prevent my son from dying,nor prevent myself either, but I sure as hell was going to go out smiling. And so far so good.

    Welcome to the club. And what a club it is.

  • justagirl
    justagirl Member Posts: 633
    edited May 2013

    Tree, yeah, you said it ' what a club it is' - the met-meisters.

    Guess I forgot to add that with my rage and being mad at the lung mets, I also, like you, decided that from that moment on I was going to live each day as I wanted to, and to as happy as I can be. Let the little stuff go, and not ponder over the big stuff.

    You are so right - I am very sad you lost both your husband and son, but like you said, you couldn't prevent it from happening anymore than any of us could of prevented what has happened. But I will do all I can to stick around for a lot longer, whatever treatment they think will help, I will do. I will continue to exercise, rest, eat well and not let anxiety get the best of me.

    I too, asked my oncologist how many years I had and she said 3 to 10. Yikes, maybe only 3? I'm just 60 and feel so much younger (most of the time). I asked why the three years and she said it isn't a good sign when mets appear so soon after the original tumour is diagnosed. Great. And then she said 'and your tumour, with it being invasive, means it could of been in your blood stream already and the type of tumour you had was 100 times more aggressive than others. Great. I asked her why the chemo didn't kill all the breast cancer cells, and she said sometimes it doesn't, that's why you take a drug like Femora or Tamoxifen. Also, as I remember my breast surgeon telling me, she couldn't give me a guaranty that she had gotten 100% of my breast tissue, as sometimes it is over in the axillary part of the body or anywhere else in the body. So no comfort there. And yes, the time table upset me. \

    So I have chosen, like you to ignore it, and just enjoy my life. Only about 6 people know about my lung mets, including my husband and son, and that's how I like it. I couldn't hid it from my 4 Bff's as two are so in tune to me that if I am down or not feeling well all I have to do is answer the phone 'hello' and they say 'what's wrong?' and then it pours out of me. I didn't want to share my burden with them, especially my BFF who has also had BC - but she says instead of scaring her (her tumour was like mine) she sees through me that life can go on so she isn't worried or afraid or anxious anymore. Go figure. I would of thought the opposite effect would happen.

    To all of us who are mothers 'Happy Mothers Day' - it's already here in Australia!

  • DLW318
    DLW318 Member Posts: 2
    edited May 2013

    Hi



    Really glad I found this thread. I'm a lung metser too, diagnosed along with primary BC in Jan 2012. I'm on herceptin and Letrozole (just changed from tamoxifen).



    I'm in a bit of a limbo at the moment as my hospital recently failed to take any action (including informing me) when a scan in early April revealed progression. I only found out by accident at my local doctor's surgery. Am now in process of trying to transfer my care to another hospital. Not as easy as it sounds as I'm in the UK and dealing with the National Health Service (I fully support the NHS but when things go wrong you are dealing with a massive and not particularly flexible institution). All a bit worrying as my breathlessness and coughing seem to be getting worse. I will be on the phone first thing Monday morning in an effort to speed things along.



    Hope all going well for my fellow metsers!



    Della

  • justagirl
    justagirl Member Posts: 633
    edited May 2013

    Jill, good to hear from you, even though you have had to deal with your mets for five years, but sounds like you have had 5 good years and I hope lots and lots more. You give me hope and strength. Thank you.

    Della, if I was you and had been not notified of any result on a scan I would of been right on the phone. And since yours indicated progression, which might entail a change in your meds or treatment, that is malpractice. Monday morning, yes, hop on the phone and call every day and whomever you can think of to help you get the change you need. I understand with the UK system you are assigned automatically to the closest medical service to where you live, but if they are endangering your life - well, that isn't acceptable. My GP always gets copies of everything my oncologist orders and it is usually the GP that gives me the results first - I like it better that way. My GP and I are closer in our relationship. The oncologist is just who I go to to tell me what meds to take or when to get the next scan or blood test.  Something is very 'not right' if you are having increased breathlessness and coughing.  Let us know how you are doing please?

  • Reality
    Reality Member Posts: 532
    edited May 2013

    DLW - I don't know the rules in the UK, but in the U.S., we have full access to our records. Each time I have a scan, I request a copy of the written report. My onc nurses say that I must qualify for a "Google Medical Degree" by now, as I look up any terms I do not know. I often find things on the report that were not discussed with me. For instance, there are "areas of concern" in my spleen, liver and hip bone. The radiologist also noted that there is an area of concern in ribs on left side, but that he believes it is due to a "non-pathological" fracture. I have never fractured my ribs, and they are painful. On my next visit to onc., I will insist that the possible fracture be further investigated. The area is right next to my lumpectomy site and near lung lesions. I often believe that since I am stage IV, with lung mets, that other areas of concern are not really so concerning to med profs. I would be receiving the same treatment, no matter where there were mets, so they just focus on the lungs and skip over the "other areas of concern" until the next scan...

  • Reality
    Reality Member Posts: 532
    edited May 2013

    Sorry if I sounded frustrated in my previous post - I am having a lot of lung pain today - It has been steadily increasing since dx. Each time I go for scans, my onc calls, with a somber greeting of, "do you want to hear this on the phone?" - well, of course I do after that opening! He always tells me that the lesions on my lungs are growing and that there are new ones...no chemo is working. I just started Xeloda. According to my Onc., it will most likely be the last one we try before ending treatment. What a scary thought - at least now, every time I take a dose of Xeloda, I feel like I am doing something to stop the disease from spreading - just not ready to "let nature take its course"...

  • justagirl
    justagirl Member Posts: 633
    edited May 2013

    Reality - you didn't sound frustrated to me in your previous post - you sounded normal for the physical position you are in.

    And your oncologist, ignore me if you like him, sounds like and unfeeling ass. I would think if he is the first to tell you the results of any test he would have you come in, good or bad. And to tell you at this point with starting Xeloda that it's your last chance - heck, why did he have to say that already?

    And you shouldn't be in pain - ask for stronger pain pills - no one should live with pain these days with all the drugs available.

    You are fighting a good fight and I'm cheering you on! And I think being angry or mad is good versus being depressed!

    You have nothing in the world, as far as I read, to feel sorry for sounding frustrated - you have every right to be frustrated!

    I feel these threads are the one place we honestly can express our fears, hope, anger, madness, sadness or whatever.

  • Reality
    Reality Member Posts: 532
    edited May 2013

    justagirl - thank you so very much for your caring and supportive words. I agree about these threads. What an amazing source of support they truly are! (I was also very suprised that he told me it is the last resort - the other choice he gave me was to stop treatment altogether. He said that it is difficult when to determine what the stopping point is, but that I may want to think about it.)

  • justagirl
    justagirl Member Posts: 633
    edited May 2013

    Dear Sherry,

    Wow, your oncologist is a real charmer, isn't he? The one I have, she is soft spoken and speaks slowly like I am slow witted, but this was good when my husband came along for the first time ever, as it gave him a chance to take it all in. Me, I wanted to tell her to just hurry up and tell me all of it!  But then that's me. Or the nurse in me.

    When I worked on Kauai in the ICU, our oncologist and his RN/assistant were the two sweetest mosting caring of medical personnel, dealing in situations that were very delicate. He had a way of delivering news that was something no person would want to here in such a way that it seemed to really help the person/family stay calm. I don't mean there were never tears, but he was so gentle. And his assistant too. Both also checked that we nurses were emotionally ok too, as I have to admit, on my long drive home at night, after a frustrating or sad 12 hours, I  sometimes would just cry the whole way.  Guess I wasn't very professional........

    I just think your oncologist could of phrased what he had to say more gently. It is your decision Sherry, and your decision if the Xeloda isn't helping to try something else.

    But please, please, talk to him about your pain. Surely there is something you can take to give you total relief. 

     I'm not a believer in God, but I believe in the strength of family, close friends and myself. I am willing some of  the  strength that this group has given to support me to you and I will have you close in my thoughts....

  • Reality
    Reality Member Posts: 532
    edited May 2013

    Dear Debbie - There are no words to express how much I appreciate your caring post. Thank you, so very much. I have read and reread your closing paragraph - it is lovely.