Having a scan? Waiting on results? The waiting room is open!

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  • Milaandra
    Milaandra Member Posts: 271
    edited September 2015


    Oh Suems!  Who gave you that rotten cold?  How are they recovering from it?  I had one about two months ago and was really worrying about my recovery rate...until I saw the coworker who gave me the darned thing.  He was worse than me!  You know antibiotics only work on bacterial infections, so it's not weird that the cough didn't go away with the prescription.  Sweet little baby-oncos are very careful, I find, which isn't a bad thing. 

    I have a bit of lymphodema myself, but the surgeon at my yearly follow-up just said it isn't too bad and the compression sleeves could be more annoying than the fluid itself.  She suggested massage (pushing the fluid up) and elevation.  I also try to raise my arm and pump my hand a few times (while bending and straightening at the elbow)...I try to remember to do that when I'm in the washroom at work, but I can get away with it at my desk by pretending to yawn and stretch :)  Starting Monday I'm going to be more careful about drinking enough water and taking green tea instead of office coffee.

    I, too, get some intermittent joint aches from tamoxifen.  The last few days it's been my right knee for some reason.  When I get up from my desk I'm practically limping.

    Don't you find the worst part of this condition, is the way every change in our bodies becomes sinister?  I started buffing my nails with one of those four sided things that takes off all the ridges...well, I guess I overdid it and one of my nails got a little weak, because when it grew to a certain length, the tip "beaked"...well, of course, in my over-active imagination that was a symptom of something horrendous...

     

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  • Milaandra
    Milaandra Member Posts: 271
    edited September 2015


    Oh, I got one of the very nice nurses to read me my CT scan report.  I'm stable again.

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  • cjanet
    cjanet Member Posts: 328
    edited September 2015

    Yay Milaandra!

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  • AmyJM
    AmyJM Member Posts: 665
    edited September 2015

    Suems,

    So sorry that you're sick and that everything seems to be piling up at once. It really can wear one down, when it's one thing after another! I know what you mean about the achiness - I have the same thing in my knees and one hip (the one that doesn't have cancer in it!), for probably a lot of the same reasons (and being a preschool teacher is hard on one's knees too).

    I hope that this finds you not quite so overwhelmed and that you can get some relief from the pain and lymphodema. I hope all the x-ray and scan results are good too. I'll be thinking of you and sending prayers and light your way.

    Hugs,

    Amy

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  • suems
    suems Member Posts: 133
    edited September 2015

    I'm still here in the waiting room, but I've moved to another chair! I got a phone call from my onc saying my x-rays are all clear, but he's sending me for a bone scan and full body CT just to confirm.

    In the meantime, I still have a cough that won't quit, and sore knees, but at least my new compression garment is helping with the lymphodema achiness,

    Now I'm waiting to see my own doctor tomorrow to start down the ENT and arthritis trails. Oh, joy! I'm beginning to see why they call cancer the gift that keeps on giving!

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  • kebab
    kebab Member Posts: 873
    edited September 2015

    I'm in the waiting room this week. I've done 19 cycles on the clinical trial and it's scan time (every 3 cycles). My TMs are up just a smidge but are still half of what they were when I started the trial, so I'm going to look at that as positive news. The reports from the bone and CT scans arrived in my inbox within 24 hours and seemed to say (to my eyes at least) that all is still stable, aside from "mass in rt breast 2.8 x 1.8 x 2.7 cm (previous measurement 2.6 x 1.5 x 2.1 cm)". This is the same mass that I was blissfully ignoring for an entire year (while in tx for stage iv) because it didn't show up on my PET scans and my regular onc was assuring me was nothing to worry about. I got on the trial, it shows up on CT, and suddenly we're calling it a tumor. Sigh.

    Anyway, the trial onc has asked to review the actual scans herself this time so I'm delivering the CD to her today. I think I'm allowed a 30% progression from baseline to remain in the trial. Fingers are Firmly crossed that it's less than that and I can continue.

    Thanks for being here, hanging out in the waiting room and sharing your support. I can't tell my friends or family how scared I am, but you all just get it. I appreciate all of you!

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  • CarlaK
    CarlaK Member Posts: 158
    edited September 2015

    I'm finally able to give up my seat in the waiting room! After 6+weeks of tests (brain MRI, PET scan, lumbar puncture and upper/lower endoscopy) they have come to the conclusion my double vision doesn't mean anything dire and my weight loss (now 36 pounds) must be a side effect of treatment. I'm happy it's not progression and now I can reassure everyone who's been worried about me wasting away-especially my kids and my mom :

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  • kebab
    kebab Member Posts: 873
    edited September 2015

    Yay CarlaK! So glad to hear that it's nothing to do with progression and it can be managed for you soon.


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  • steelrose
    steelrose Member Posts: 3,798
    edited September 2015

    Great news, Carla!

    And kebab, I'm crossing my fingers tightly for you getting the green light to continue on.

    Wishing everyone the best!

    Rose.

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  • kebab
    kebab Member Posts: 873
    edited September 2015

    They didn't make me wait long for the good news. They're considering me still stable and approving me for 3 more cycles on the trial. Yay! Thanks for letting me post my worries here.

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  • steelrose
    steelrose Member Posts: 3,798
    edited September 2015

    Yay, Kebab!!!!

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  • nancyh
    nancyh Member Posts: 2,644
    edited September 2015

    Great news, kebab!

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  • terrij152
    terrij152 Member Posts: 530
    edited September 2015

    Finally got some good news, my tumor markers went from 85.9 to 48.3 in two months! So happy, this means no change in treatment for me now!!

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited September 2015

    Dang...I ate my jamocha almond fudge ice cream last night...going to get a DQ Blizzard to celebrate Terri & Kebab...woohoo!!!!!!!

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  • steelrose
    steelrose Member Posts: 3,798
    edited September 2015

    Great news, Terri! Hope we're on a good news roll...

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  • suems
    suems Member Posts: 133
    edited September 2015

    I'm now booked for a bone scan on Tuesday, and waiting to hear about my full-body CT scan. In the meantime, my Doc is trying me on cough suppressants and a different antobiotic for my cough, and is waiting for the scan results to see what's happening next, in both knees and cough.

    Waiting waiting waiting ........

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  • Bosco19
    Bosco19 Member Posts: 221
    edited September 2015

    managed to inadvertently lose connection to this thread - was wondering why it was so quiet... So congrats to all those w recent good results and wishing good things to those with less good news or still waiting for results. I'm back in the room waiting to see if 4 weeks of Revolade will fix my platelets issue. Have had 3 hospital stays this month and getting bored with it

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  • Bosco19
    Bosco19 Member Posts: 221
    edited September 2015


    This Facebook photo made me think of the room

    image

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  • Northtexas
    Northtexas Member Posts: 67
    edited September 2015

    Terrj, yay!  So happy with your good news!

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  • kebab
    kebab Member Posts: 873
    edited September 2015

    I agree 100% Bosco!

    Yay for the good news Terri!
    I'm keeping you in my thoughts suems. Hang in there.

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  • suems
    suems Member Posts: 133
    edited September 2015

    I had the bone scan this afternoon - now to wait for the results!

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited September 2015

    My mother's results all showed stable, but a fracture in the sacrum has the onc questioning whether it's something she's done/wear and tear on already damaged bones, or if Xeloda is failing after 18+ months. He has sent her for radiation to the sacrum and lower spine and will re-scan her after rads before deciding if she will switch treatments. So the news is confusing, but we're still hanging onto the fact that 5 scans in the past 6 months still show stable. I know bone mets are hard to track on scans of any kind, but fingers are still crossed.

    Unfortunately, we had a not so great experience at the cancer center we were sent to for radiation. The radiation oncologist and his nurse were both incredibly negative. Okay, more like the angels of death! My mother, until this fracture and resulting pain episode, has not been on any pain meds in the 3 years since her stage IV dx. Even now, she's content taking Advil when she does have pain. This sent the nurse into a fit! She lectured us about the severity of her cancer and talked over her when my mother tried to explain that she'd been pretty much pain free up until this. The nurse repeatedly said "You NEED to understand that you have metastatic disease and it is only getting worse". She also kept talking about how she should "take something at night because cancer hurts more at night and not sleeping isn't helping anyone" -- this even though my mother repeatedly told her that she actually feels better at night because she is not putting any weight on the hip/leg and therefore sleeps great. It was infuriating! Then the rad onc came in, and while very friendly, he too jumped to conclusions about my mother's pain and ability to live her daily life, even saying to her that she needs to put her mother (my grandmother who lives with her) in a home. I swear he was on the verge of suggesting hospice or some kind of facility for my mother until we both jumped in and informed him that my grandmother is entirely self-sufficient and doesn't actually require my mom's physical care. If anything having my grandmother with her has been a great help because she cooks and helps with basic things so my mom can rest her hip. My mother also had to remind him several times that until this fracture, she's been very active and feeling great. She felt dismissed and completely misunderstood because the nurse and onc both made the assumption that her extensive mets mean she must be completely incapacitated and on her last leg. Did I mention she still only has bone mets as of last scan? I wanted to grab their tongues to stop them from saying anything else and actually listening to us! It seems that not being in hysterics gave them the impression that we don't understand the severity of her disease. Jeez.

    An infuriating experience that we'll try to put behind us as she starts her radiation next week.

    Wishing everyone great results!

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited September 2015

    OMG Goldengirls - Who do they think they are? Infuriating to say the least. Hoping the rads take care of the fracture and that all is stable.

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited September 2015

    Thanks Linda. It was definitely a shock. Not sure we will be quite so diplomatic if it happens again. Fortunately, we only need to go there for rads; all other treatment and her regular oncologist is at a different center and he's great.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited September 2015

    You know I think it's endemic in the oncology world - my MO is usually great but last visit she gave me a hospice brochure which tells me I can go for music therapy, messages, aromatherapy, etc. and take a "friend" with me - she and her nurse also gave me a brochure for meals that are already prepared and frozen (expensive and repulsive) come to mind - and here I am walking my dog three times a day, going to the mall although not always on the bus anymore because neuropathy makes me have to decide between shopping and walking, taking the bus to the grocery store at least once a week (getting major supplies delivered that I order online) shoot, I even take the bus to and from the cancer clinic to get my shots and blood tests - I do my own laundry, etc. - what are they trying to tell me???? Thank God I have my PCP who acts like I am going to be around forever..shame on the rad onc and his nurse for scaring your mom.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2015
    So sorry that you've had these negative experiences. All of my medical team have been kind and optimistic. I belong to an all inclusive HMO (all hospitals, docs, labs, pharmacies etc. are on one campus) so each doctor knows exactly what others have done and said . They place a big emphasis on wellness and provide al sorts of classes and even a weekly farmers market. I wish everyone had access to stuff like this.
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  • bama351
    bama351 Member Posts: 42
    edited October 2015

    Get my results from my last PET on Wednesday. I feel great, tumor makers are in the 30s. Mentally/Emotionally doing well. I. Really. Don't. Want. To. Go. I dislike my doctor greatly which makes things even worse. Happy Monday.

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  • terrij152
    terrij152 Member Posts: 530
    edited October 2015

    Bama, glad that your tumor markers are low. Sorry that you dislike your doctor so much, for me that's the most important part for me. I love my oncologist and always feel better when I see him, no matter what the news is. Hoping for good news from your PET scan, keep us posted!!

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  • bama351
    bama351 Member Posts: 42
    edited October 2015

    Good news from the scan. Nothing changed for the worse from the scan in May. Only thing glowing (he said barely glowing) is something on my hip which he says has remained stable. So I'm satisfied with that.. hard to be happy in these situations ... I like the fact that my tumor markers seem to be so in sync with the PET.. first one was lighting up all over the place and my markers were over 200 and now just a little blip and my markers are barely over normal.. I'm hoping that will save me some unnecessary scans in the future..

    The only treatment I am currently on is Aromasin, Lupron, and Zometa.. Any chance that could turn off that bone met? Or is my best hope for it to maintain? I started the pills about 2 months ago.

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  • Teakie88
    Teakie88 Member Posts: 226
    edited October 2015

    Just had another PET scan done yesterday at hospital. My onc's office called me this morning to tell me "No evidence of recurrence." Needless to say, I'm so happy to hear that kind of news. Previous PET scan in March said same thing. I never take it for granted that it will be good news or bad news, but I sure love hearing good news once in a while! I'm gonna date NED for as long as he'll have me, that's for sure! Best to all of you out there. Ann

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