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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2015

    Hi TechtonicShift, I can't help with onc recommendations but I can tell you who I told at stage IV dx. Of course I told my husband and grown children but not my grandchildren at that point. I never told my parents and at their passing they still didn't know. Gradually I told my siblings but that took a few months.

    My grandchildren now know but they are no longer small so that's just fine.

    When it come to whom to tell and when to tell it really is up to you so if you decide not to say anything then that is jyst fine.

    I know you want to be ahead of the game by being prepared but please don't allow that probability of getting to stage IV rob you of the joy of living right now. In reality all any of us have is the moment we are in and projecting the future is really quite a futile exercise.

    Love n hugs. Chrissy

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2015

    Tech try to take things one day at a time, deal with what happens on that day and try not to project.......it really is the best way to get through all this and remain sane.

    Tears are good as they help to relieve stress so don't worry about the need to shed them.

    Love n hugs. Chrissy

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  • 39andhip
    39andhip Member Posts: 164
    edited December 2015

    Thanks for the response, Chrissy. It's sort of what I suspected.

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  • Michele2013
    Michele2013 Member Posts: 350
    edited December 2015

    Has anyone had or heard of Adriamycin induced mydiacarpothy injection fraction?

    At the end of 2013, I was having some heart issues so I was referred to a cardiologist. I had an ultrasound and my ejection fraction was 50. Normal is 55-75. I was put on coreig. Fast forward to October I began getting short of breath and feeling like my heart was beating in my throat and ears. So cardio ordered another ultrasound and now my ejection fraction is 30-35. So next week I will be having a heart MRI. This is what confuses me because I was told it can be reversible at 50. Now there is talk of a defibrillator. Anyone experience this?

    Michele

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  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2015

    Hi, Michele ~ I'm so sorry to hear that you're dealing with heart issues as the result of Adriamycin, but I'm also surprised because it sounds like your onc may not have informed you about this risk, as reported in this article: http://vitals.nbcnews.com/_news/2012/08/31/1357342...

    I realize NBC News may not be the most scientific source, but it's a good article because it talks about the 20% risk of developing heart failure, vs. the 3 to 5% risk previously believed and quoted, as well as the fact that it can appear over the 5 years post-chemo. OTOH, sometimes even knowing these stats, we're left between a rock and a hard place because of a drug's potential benefit.

    I'm so sorry this has happened to you. I have no personal experience with Adriamycin and its SEs, so can't comment on where you go from here. But hopefully others here will have some encouraging input for you. (((Hugs))) Deanna

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  • toomuch
    toomuch Member Posts: 901
    edited December 2015

    Chrissy, Deanna and Viceroy - Thanks so much for your responses. It's so nice to have a place to go to feel safe and express my fears. I was so worried Monday night but I went to work early yesterday and was so distracted by the busy ED that I didn't realize until after 4:00 pm that my doctor hadn't called. My cough had already started to improve with the steroids but I left her a message this morning and she called right back. She didn't realize that I expected her to call even if the chest xray was normal which, thankfully, it was. So, a simple miscommunication with someone that's never been diagnosed with cancer! I let her know that telling me that the results are normal is just as important as letting me know when there's a concern!

    Chrissy - I am on an Arimidex and I'm coming up on almost 5 years. My doc plans to continue it for 10 and I'm happy to do so. Fortunately, this cough was not a reaction to it because I don't think that I could tolerate it for another 5 years! I have to thank you and Deanna for taking the time to respond and reassure those of us who are worried about being diagnosed with mets. I hope that your current treatment brings you stability or regression for a long time to come because with time comes hope for a new effective treatment.

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  • Michele2013
    Michele2013 Member Posts: 350
    edited December 2015

    Thank you Deanna, my onc gave me a handbook to read. I guess it's unusual to have this happen.

    Think I will do a search of Adria induced cardiomyopathy and ejection fraction.

    Michele

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  • Rowan47
    Rowan47 Member Posts: 151
    edited December 2015

    Michele, I had the same issue after having Adriamycin!! Had ECG and my EF was lower than before....cardiologist said it was due to slight damage of my left ventricle due to the chemo. He didn't prescribe me anything, just told me not to run any marathons !!

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited December 2015

    Tech, you got (as usual) good advice from Chrissy. It's good to know what's going on, but the CTCs may be arising from a localized tumor, not necessarily a metastatic one. Only time and scans will tell.

    Michele, from what I read, defibrillators may be better for your quality of life than meds. But it should be your choice. Have you tried propping yourself up on extra pillows at night to help you breathe?

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  • many
    many Member Posts: 254
    edited December 2015

    Mywife is onGemzar for liver Mets and carboplatin and she had her last gemzar on 19th and was told to take 5 injections of nueprogen which were completed yesterday .today we. We're told to do CBC & Hbwas 9.7 ,platlet-23000 & WBC-23100 ,she has wet cough since last 3 days but I am wondering why are the WBC COUNT so high? Is it due to nueprogen or infection or something else?

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    • chrissyb
      chrissyb Member Posts: 16,818
      edited December 2015

      Many, high WBC is a good sign for your wife. Besides the normal high count when your body is fighting an infection they can also be used as an indicator of cancer cell death.

      Sounds like her treatment is working well.

      Love n hugs to both of you. Chrissy

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    • pajim
      pajim Member Posts: 2,785
      edited December 2015

      Many, the white counts are likely high because of the neupogen. That's that whose injections are supposed to do.

      It could also be the infection -- I hope she feels better soon.

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    • Michele2013
      Michele2013 Member Posts: 350
      edited December 2015

      Heidihill, I will try the extra pillows. Thank you for the advice.

      Rowan47, I have high blood pressure and it drops really low, because the medication to reverse this condition has this effect (coreig). Which causes me to pass out (syncope). One time I passed out getting off the toilet and I hit my head on the bathtub.Had to get stitches. My son found me and he thought I was dead. Had blood running down my shoulder and lost my bowels.

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    • glennie19
      glennie19 Member Posts: 6,398
      edited December 2015

      Michele: try taking the Coreg with food, if you are not already. Those episodes where your BP drops when you change from sitting to standing is called orthostatic hypotension. Taking Coreg with food can help with that. There is also an extended -release version of Coreg, maybe changing to that would help you too. Sorry that you have ended up with cardiac issues after taking Adriamycin. That stinks!

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    • Rowan47
      Rowan47 Member Posts: 151
      edited December 2015

      Oh, Michele, how awful! Hope you're healed up after that fall :)

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    • Michele2013
      Michele2013 Member Posts: 350
      edited December 2015

      I will try to eat something and take my coreig. Hopefully this will help.

      I am healed, this happened last fall.

      Thank you ladies :)

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    • Jumpship
      Jumpship Member Posts: 305
      edited March 2019

      I watched a video about metatastic breast cancer and freaked out. I had my breasts removed and saline implants put in. My doc only does scans if you develop aches and pains that don't resolve and she doesn't run tumor markers. My other doc is watching ovarian/uterine stuff well but if cancer reappears in the breast area how would I know ??

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    • chrissyb
      chrissyb Member Posts: 16,818
      edited December 2015

      Hi Minivan, if cancer would return in the breast area it would be felt on exam or a soreness would be felt so you could make sure scans were done.

      Tumor markers don't work for everyone, I know as they don't work for me and docs don't rely on their results they are only used as an indicator.

      Love n hugs. Chrissy

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    • RobinLK
      RobinLK Member Posts: 840
      edited December 2015

      I have posted this elsewhere, but I know you all here are very knowledgable..

      3 days ago my LE went from swelling in my index finger to swelling up to the elbow. I am on a 3-4 month waiting list to see my LE therapist. Last night I discovered a lump in that arm just above the inner elbow area. I am concerned that it may be all related and that it could be the BC returning. I will be calling my BS, she has an US machine in her office.

      I feel like bawling... I am so tired of recurrence scares. 5 benign cysts along mastectomy scar, full body bone scan(arthritis from tamoxifen), MRI of head(symptoms from trying to titrate off Effexor), lump on right rib(scar tissue from drain)

      My lymph nodes on that side were extra nodal and I had LVI. My stress level has not been like this. I don't know why this one has me a mess. You would think one gets used to this.

      Which of my bazillion Drs should I be calling? It is not emergency room worthy, I don't think. Mentally, that would get me closer to an answer, in a shorter amount of time. I don't think I am dealing with cellulitis, and the lump is about the size of a grape tomato

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    • dlb823
      dlb823 Member Posts: 9,430
      edited December 2015

      Robin, it's highly unlikely that mets would present with a grape tomato size lump above the elbow. Nothing about that sounds like mets to me, even coming on the heels of a swollen elbow. If the lump is soft, it could be something like a lipoma.

      The LE in just an index finger and now appearing in the elbow is also a bit unusual. Are you sure it's LE? I'm certainly not an expert (although I do have truncal LE myself, which oddly has improved since I was re-dx'd with bone mets) -- but what you're describing sounds more like something that's attacking your joints, such as arthritis or maybe some other autoimmune thing.

      As far as which doc to call, I would start with your onc. I suspect he will refer you back to your PCP or maybe even a rheumatologist, but you need your onc to reassure you. And if you truly think the elbow swelling might be LE, can you call your therapist, report the new symptom(s), and see if you can get your appt moved up? I don't think it's LE, but again, you'll feel reassured if an LE therapist reconfirms this.

      Good luck, and please let us know what you find out! (((Hugs))) Deanna

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    • RobinLK
      RobinLK Member Posts: 840
      edited December 2015

      Thank you Deanna for your reply.

      The lump is hard and there has been no trauma to that area. It is in the exact area of the cubital lymph nodes.

      The swelling is definitely my LE. It was confirmed in just my index finger quite some time ago. Neither of the treatment facilities near me have openings for 3-4 months. I had to leave my script with the office and they will call if something opens up, but the waiting list is long. They are trying to hire more LE therapists, but they are not common this side of the valley.

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    • tangandchris
      tangandchris Member Posts: 1,855
      edited December 2015

      thinking of you Robin ((hugs))

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    • glennie19
      glennie19 Member Posts: 6,398
      edited December 2015

      Robin, that is terrible that you have such a long wait to see LE therapist. Agree with Deanna: call your MO and let them see the lump. Maybe they can work a little magic and get you seen at the LE place faster too. Sometimes when the doctor calls,, ,they make room.

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    • RobinLK
      RobinLK Member Posts: 840
      edited December 2015

      Saw my BS, sent for ultrasound of area. Should know more tomorrow. Her office is also calling my LE therapist's office to get me in sooner.

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    • Tomboy
      Tomboy Member Posts: 3,945
      edited December 2015

      Please come back and let us know!

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    • RobinLK
      RobinLK Member Posts: 840
      edited December 2015

      Not a blood clot, offered a biopsy. I said yes, but now want to say no. My lymphadema is not controlled in that arm at the present moment. I don't want to make it worse. Left a message to cancel biopsy. They said it looks like fat necrosis, but I have had no injuries in that area, so no one is sure what it is

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    • TectonicShift
      TectonicShift Member Posts: 752
      edited July 2020

      .

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    • Anonymous
      Anonymous Member Posts: 1,376
      edited December 2015

      Hi,

      Could someone explain qualifying for SSDI based on a mets dx? I am worried that if I do become Stage IV and am unable to work, I will not have enough work credits to qualify and my husband will have to shoulder the financial burden on his own. I'm not sure if it's based on time work or income, but I fear I am lacking with both. I will turn 31 within six months, and I gather that will put me in a new bracket but right at the bottom of it. I graduated right before the economy went kaput and ended up with a few employment gaps, plus I didn't work during my early stage treatment as I moved out of state to live with family and wasn't really in a good place to look for a new job for awhile. I'm working full time now, but I work in the nonprofit sector so I don't make a lot. Can anyone help with info? Thanks

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    • Artista928
      Artista928 Member Posts: 2,753
      edited December 2015

      Post your question here. Folks here know about the process.

      http://ssdfacts.com/forum/index.php

      Getting SSDI is very difficult. You may have to go with state disability if your state has it. In CA it's up to a year. All you need is your doc to say you are unable to work and provide records. That's it. SSDI depends on how much you've worked I think during the past 5 years. Also income. But the most difficult part is proving to SS that you cannot do anything, even mop a floor, for at least a year. It's not just not being able to do your job, but at your age, it's anything in the economy and some of the job titles they come up with is funny. SSDI also takes a very very very long time to get an answer. Majority of people wait a year or two to get in front of a judge after being denied, which most people are at the initial app. Check out that board I posted above. It's very informative from people who have been through the process and even some who worked for SS.

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