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

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    You and I both gramen. I can definitely see now the relationship between unresolved emotional baggage and this disease. And yes Z, in an odd way, it has helped me to release a lot of conflict within myself to where sometimes I do feel like a happier person in many ways. gramen, your vacation sounds like you had a blast and so great to spend time with family. Best wishes on those scans!

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  • AmyJM
    AmyJM Member Posts: 665
    edited August 2016

    So, since my Stage IV diagnosis, in Spring of 2013, my TM numbers had stayed between 13 - 29 (they had been around 63 when diagnosed stage IV and went down right away with treatment). Last April, they were up to 56, so had a CT/PET scan which showed no progression. At the end of July, my TM numbers were up to 84, so another scan this coming Tuesday. Depending on what it shows, I may stay on Arimedex or may switch to Faslodex/Ibrance. I'd been holding steady for three years (not NED, but no progression either), but I'm really worried about it this time. There 's something about the first progression - really takes you out of denial-land and drives home the point that I can't just stay in a holding pattern forever.

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  • steelrose
    steelrose Member Posts: 3,798
    edited August 2016

    Amy,

    I so relate to your situation, and your comment about that first progression is so true. No, odds are we can't stay in these holding patterns forever BUT if there is progression, we can beat it back again and stay in another holding pattern for a very long time! Arimidex was good to me for years... I miss it!

    I hope that your TM's are just being funky, and that your scan is clean. Just remember that no matter what, you've got this and we're all here for you.

    Rose.

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited August 2016

    Well scan for me on Monday. I've been stable for 3 years on weekly Taxol the last six months on the oral version. I'm with you Amy and Steelrose on the first progression. Hopefully I'm still stable and my current bone pain is just old age. but I lost a good friend to this shitty disease a couple of weeks ago, then 2 girls from my support group passed away within 2 days of each other, then there's been bad news for several others. It all just adds to my nerves.

    The sooner it's all over and I can get back to normal life the better.

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  • AmyJM
    AmyJM Member Posts: 665
    edited August 2016

    Rose - thank you for the encouraging words, and ShazzaKelly, you'll be in my thoughts and prayers this week. Let's hope both our scans come out well!

    Amy

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    My scan is Tuesday as well, and I am as usual a basket case several days before. I just have the ominous feeling that I will have progressed. I hope it is just nerves as I feel fine but we'll see. My TM's went up 20 points each as of last blood draw but some say that is tumors shedding dead cells...Good luck Amy and Shazza! Thanks for the encouraging reminders Rose!

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  • steelrose
    steelrose Member Posts: 3,798
    edited August 2016

    Love and best wishes to Artist and Shazza too. I've got everything crossed for all of you!

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited August 2016

    I am keeping everything crossed to. My thoughts will be there with you on Tuesday.

    Lynne

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited August 2016

    Artist, Shazza, Amy, good luck with your scans! I will be thinking of you and hoping for the best!

    I will have scans on Thursday. I was just scanned in July and had a lot of progression, changed chemo, and still my tumor markers went from 605 to 1,145 in the last 4 weeks!! Yikes! I fear something crazy is gong on. Keeping my fingers crossed for all of us!

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    Hummingbird, I'm so sorry to hear of the big progression and rise in TM's. I'm saying a big prayer for you that they figure out what is going on quickly and you get on a med that starts kicking butt. You have been through so much lately you need a big, fat, long break. Thinking of you on Thursday. We will be waiting to hear some good news!

    I just got word today that my insurance won't pay for a PET tomorrow so they are moving to CT's....At least they got me in the same day after all the scanxiety I experience. Does anyone know if a CT shows whether the current Tx is working like a PET does?

    Thanks for the good wishes all and back at ya!

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  • AmyJM
    AmyJM Member Posts: 665
    edited August 2016

    Artist,

    I had CT and Bone scans when I had insurance that wouldn't cover the PET scan. My understanding of it was that the CT and Bone scans showed what was there, and the PET scan showed where any active cancer was. I think the CT scans will show if there is anything new, but might not show what is active or not in what was already there. For instance, when I finally had a PET scan, it showed that some of the mets in my spine that still showed up were inactive. IMO, the PET is more thorough of a representation of what is going on, but the CT scan (in my case, I had a bone scan too - not sure if you are) is the next best thing and probably sufficient to see whether or not there is progression.

    Good luck - I will be thinking of you tomorrow!

    Hugs, Amy

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited August 2016

    Artist, thank you so much. As far as the CT scan, I haven't had a PET scan in about a year and a half - although I have had many CT scans. The CT certainly is able to pick up progression and I think is better at measuring tumors to show if there is a change in size. But I always have a bone scan too, as Amy mentioned, as well as the CT scan. Amy gave a good explanation of pet scan vs ct scan with the pet showing activity.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    Thanks ladies, I guess I feel glad to get a CT since I have never had one. I will learn a lot and will be interested in seeing the difference. I just hope they can get a concise picture of whether there is progression or not or whether these current meds are working or not. I guess if a tumor grows or new ones show up they are probably active? If my enzymes are still elevated on 75 mg Ibrance they will probably drop it.....

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited August 2016

    I'm joining you ladies in the waiting room. I had my scans (CT and Bone) yesterday and have already checked the patient portal several times even though they said 3-4 days. I have no reason to be nervous...TMs are low and not having any new pain, but one thing I've learned is that you should never get too comfortable.

    Artist - I've only had CTs (and bone scans and MRIs). My doctor says he feels they are equally effective, but he prefers to stick with one or the other for comparison to earlier scans (although he may have said this just to dissuade me from asking for a PET). Amy and Hummingbird - thanks for the good explanation of the difference. I like my doc, but I learn so much more from you ladies.

    Keeping you all in my thoughts.

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited August 2016

    Shutterbug, good luck to you too with the results of your scans. I do the same thing - I check the patient portal way before I know the results will be there! Can't help myself!

    Wishing everyone the best

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    Oh hahaha! I do too! Just went there even though I've only been home for 2 hours....Thanks Shutter. I think it is a good thing to have at least one CT to get a more detailed view of tumors even though comparing was difficult this time. She said all in all it looks stable but I am still waiting on TM and enzyme results. I hope and pray that I do not have to change meds again so soon....Good luck on results Shutter! Super good results for you tomorrow Hummingbird!

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  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2016

    Lots of scan results pending! I hope everyone gets good news! Fingers crossed....

    I had another brain MRI yesterday. (I had a CT a month ago and was immediately admitted to hospital as it showed Leptomeningeal Mets, then had an MRI for a clearer pic) At least this time they let me go home- so I guess it can't be too bad!

    I also had a spinal MRI last Friday, which showed a tumour on my spinal cord & ended up going to hospital again for immediate radiation planning & radiation- all done within 3 hours! So you can see why I was so happy to go home yesterday.

    I get my MRI results on Monday- hope it shows the WBR did a good job.

    As for PET scans- I had one in May & it didn't show any of this stuff- it just showed a little progression in the bones. (I think it gave me a false sense of security) So my chemo was stopped & I was having a break when all h*ll broke loose. The CTs & MRIs have certainly shown everything this time around.

    My markers have sky rocketed too, Hummingbird. They were in the late 200s but now are over 1200.

    Wish you all the best

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited August 2016

    artist, I am SO happy that your results look stable! Now let's hope that your other numbers look even better!! Keeping my fingers crossed for you and praying for really good news!!

    kt, I remember we were on the Taxol thread together. Sorry to hear you have high marker numbers too, and that you had that progression. ILC is sneaky like that - hiding and then as you said, all h*ll breaks loose! So I'm really hoping you get good MRI results on Monday! Will keep my fingers crossed for you too!!

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  • AmyJM
    AmyJM Member Posts: 665
    edited August 2016

    So, I looked online this morning and it had the results from yesterday's scans. It basically said that the lesions had not increased in size or number, but they have become more active since the last scan. I got a call from my onc's NP today and she said it wasn't a big concern (the way she put it was that it "wasn't anything to write home about") but said that my onc decided it was time to switch treatments, to stay on top of things. So, no more Arimidex and starting this Friday, it's on to Faslodex/Ibrance.

    I have very mixed emotions - I'm glad it didn't spread, but there's still the whole psychological/emotional thing about changing treatments for the first time. And, even though she said most folks tolerate the Faslodex/Ibrance fairly well, I'm pretty sure it won't be as easy as the Arimidex was. The only side effect I really had from that was occasional hot flashes, and possibly making my arthritis a little worse.


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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited August 2016

    Amy - I'm sorry to hear you will need to change treatments, but glad you onc is up on it. Is this your first change in treatment? Hopefully Faslodex/Ibrance will be as good to you as Arimidex, maybe even better!

    Artist - sounds like good results! Hopefully the other tests will confirm. Yay!

    Fingers crossed for everyone still waiting.

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  • steelrose
    steelrose Member Posts: 3,798
    edited August 2016

    Amy,

    Wish you didn't have to switch treatments but Arimidex may have run it's course and your oncologist is wisely making a move before things get out of hand. I caught progression late a couple of times and my onc tossed me into the chemo room. Ugh. But Faslodex/Ibrance has been very effective for many. Check out the Ibrance thread. I'm currently on Ibrance/Aromasin.

    Wishing you the best!

    Rose


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  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    Hey Shutter! So my TM's were down a little and enzymes were acceptable. But now my neutrophils seemed to tank this time on the lower dose! So she at first thought we were going to change. But then I asked her if we could do two weeks on two off of Ibrance to see what happens. So not terrible, not great, just gray.....Steelrose and Amy I hope you stay on your combo for a very very long time!

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  • AmyJM
    AmyJM Member Posts: 665
    edited August 2016

    Thank you Artist, Rose and Shutterbug.

    Rose - I've been hanging out at the Ibrance/Faslodex thread and perusing the Faslodex thread, but I'll have to check out the Ibrance one too!

    Shutterbug - Where abouts in Michigan are you?

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  • steelrose
    steelrose Member Posts: 3,798
    edited August 2016

    Hi Artist...

    Just saw your update, and gray is okay! Especially since your TM's are down. I hope you'll be able to stay on Ibrance and that the adjustment helps.

    All the best!

    Rose.

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited August 2016

    Artist - great news on the TMs! Glad to hear you can stay on the same course. Hopefully those neutrophils will start cooperating soon.

    Amy - I am in Milan just south of Ann Arbor. I hope you fared ok in the tornados/storms that blew through GR yesterday. We actually considered driving into GR yesterday, but went up into the thumb instead. Saw the Sanilac petroglyphs, drove way up to Port Austin and then down the coast, stopping at a lighthouse on the way home. It was a fun way to celebrate my 2 year metsaversary! I wish you the best with your new treatments.

    KT - will be thinking of you tomorrow and hoping for good MRI results.

    I got good news this morning -- all scans look stable! That means I can go back into denial for another 6 months. The CT did show "minimal hiatal hernia" which could explain my occasional heartburn (when I eat too late at night). Man, can't hide anything from anyone anymore! I hope this doesn't mean more tests...

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    Thanks Rose! I started my two week break yesterday, went for a bike ride and just crashed when I came home. Like MAJOR fatigue. It was weird. So hope everything springs back in two weeks and can restart the med. Shutter, On to the 3 year metaaversary! I LOVE lighthouse and have only been to one in my life. Sounds like a nice relaxing trip driving along the coast. Yay for STABLE!!! Back to work on Thursday and it's nice to be distracted and see all of my co-workers. Sept 1st get to see all the kids!


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  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2016

    Great to see some good news Shutterbug & Artist :)

    I'm sorry yours was a bit mixed Amy.

    I saw my onc yesterday. The MRI of my brain came back that the pineal gland met and other scattered stuff had shrunk (was previously unaware of stuff in my actual brain), the LM still evident & unable to get receptor status from the lumbar puncture :(

    So the plan is I go on to vinorelbine (navelbine) weekly. There is a trial for Abermaciclib, but your brain mets have to have increased in size to get on to it.

    Next up is a baseline CTscan. I'm hoping vinorelbine will do the trick.

    Take care all

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    I'm hoping so too kt! Heard good things about navelbine. I guess it's a good thing that the mets haven't increased enough to go on the trial. You take care too.

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  • gramen
    gramen Member Posts: 179
    edited October 2016

    Another scan this morning. Now the wait! It never gets easier :-)

    And Friday brain MRI, that one I see the Dr right after, so not sure what's more difficult the day wait or the results right away!

    Positive and healing vibes to all of you

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  • zarovka
    zarovka Member Posts: 3,607
    edited October 2016

    Gramen - thinking of you! >Z<

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