Separate radiation treatments (for BC Mets to skull and spine)

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YellowRoses
YellowRoses Member Posts: 20
edited August 2018 in Stage IV/Metastatic Breast Cancer ONLY

Last posted 2016-absence is complicated. Hope all of the kind people who had responded back then are doing well(Just posted this as a reply to post from 2016 but realized maybe needed to enter it this way. Am VERY low tech) 1st Dx, 2001 Lobular invasive carcinoma, stage 3. Did well. "discharged" as a pt. in 2001. 2012 BC mets to colon. Arimidex worked 4 yrs. 2016 further mets to bone. Ibrance, Falsodex, Xgeva. Past March, mets to skull. (PET showed no other organs involved.) Completed 5 days stereotactic radiation, June 22. During that treatment week, more mets to cervical spine (C4) discovered. This coming week simulation for another bout of stereo radiat. to spine, to be done in about 2-3 weeks from now. Am STILL dealing with after effects form brain radiation (I call it skull radiation, sounds less intimidating to me), but odcs consider it to brain.Am beyond wiped out. Before Winter, 2017/2018, still felt pretty strong and well. Started to feel as tho something wasn't right, Winter of 2017/2018. Since radiation to skull, have felt old and as if I am spiraling down.Last several days having very ominous feelings abut upcoming radiation (didn't feel this pre-brain radiation)and wonder if anyone reading this has had separate radiation treatments SO close together. I have never heard of this before.

I do intend to call radiatn onc's office tomorrow, to ask if what I am feeling could be after effects of treatment.

Docs keeping me on current meds until follow up MRI's and a follow up PET to all be done in Fall.I have aways been a very upbeat person and have always been able to see the humor in some very tough times I still use humor to get me through all of this, (it's always been a part of me) but not today. Any thoughts? THANK YOU!



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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2018

    Hi YellowRoses -- we're "bumping" this thread for you in the hopes to get you some answers from others here. We saw you posted this on a Sunday afternoon, which tends to be a slow time around here. We're mostly active during the weekdays. Hopefully someone will see your post and respond soon!

    We're sorry to hear of your recent progression, but really glad you decided to come back here for some answers and support -- we're all here for you and hope you get some responses shortly!

    --The Mods

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  • bigbhome
    bigbhome Member Posts: 840
    edited July 2018

    Yellow roses, I am so sorry about your progression. Keep on looking at the positives if you can!

    I had radiation to the right hip and then had radiation to my neck and then had radiation to my face. One right after the other and by far, the one to my face was the worst in regards to se's! The dizziness, motion sickness and vomiting were the worst thing I have ever been through! Kudos to you for getting through the hardest one first! The rest should just cause fatigue! Hopefully your response will be as good as mine was. My tumors shrunk by 70%! My Ro and Mo were thrilled with the results! I look forward to hearing about your results.

    Hugs and prayers,

    Claudia

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  • YellowRoses
    YellowRoses Member Posts: 20
    edited August 2018

    Hi Claudia, Am so sorry you had to experience such tough se's from rad to face.But you are a trooper. THREE in a row. Yikes!

    Thank you for your encouraging words! After once posting above I learned something else. Part of my ominous feelings had to do with the mask they make for you to immobilze you. The one for rad to brain at least had a more open"face". (For different machine too:Varian True Beam Linear Accelerator)).The one I just had made last week at the simulation(for CyberKnife LINACC)) was something out of a medieval torture chamber-or so I thought. It was huge-covered entire head-front, back and top and extended down to beginning of breast line. (Will be radiated at C4 at the very top of spine, behind my neck) Incredibly tight (as was the one for brain rad but necessary for immobilazation)but also felt suffocating. When I mumbled through the thing, "When do they put in the air holes?"- they said the front was covered with air holes. Long story short, called the ro office and spoke with a very kind nurse. Xanax had worked for all rad to brain treatments, but was already wearing off when they were doing only the simulation (not too long after takin Xanax.). What I then learned, from nurse, contrary to what was told for brian rad, is OK for me to fall asleep duorng treatment so, they are uping my X dose. Will also be taking codeine for cough side effect-worried I would cough and move and get zapped in the wrong spot. They also said, to tell the rad therapists to cut bigger air holes for me. Whew! I feel much more confident going into this. And also since last posting, re after effects of brain rad went from all time low re energy level, general sense of well being- felt as though was dying- past Friday morning to finally turning around and actually started to feel BETTER!! (Last brain rad was June 22). So, between increasing meds (and I HATE meds, but a girl's gotta do what a girl's gotta do, to.) and better air holes, am now feeling lots more comfortable with this back to back zapping.

    Thank you again for your encouragement. My 1st zapping will be August 9. They don't yet know how many total treatments-total of from 3-5.

    Gratefully,

    Your Bosom Buddy

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  • nowaldron
    nowaldron Member Posts: 94
    edited August 2018

    Hi YellowRoses,

    I hope you are feeling better since your posting. I did have separate radiation as I had mets to femur, spine, ribs, skull and liver. I was hospitalized during this time, though, as onc was worried about snapping the femur. This was back in Feb of 2016. I was pretty sick at the time so I am not really sure how the rad affected me; I was on so many drugs at the time. I'm not sure this is of much help, but just wanted to lend my support. 

    I, like you, have always been upbeat through this, but I have been having a hard time lately. The Herceptin I have been taking for 2.5 years may be taking a toll on my heart. I'll have another echo next month and the onc will decide what steps to take. It never ends, does it. 

    Wishing you good health and happy thoughts,

    Nancy

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  • YellowRoses
    YellowRoses Member Posts: 20
    edited August 2018

    Hi Nancy,

    Wow. Here I was thinking one one ever had more than one radiation at a time-or at least very long time in between. How wrong I was! It gives me so much strength to know I really am not alone. Am, so sorry for all you have been through. But glad to hear that it sounds as though things had been better last 2 years. Hopefully, you will soon know (next month) what's going on. You are right, just when you think you are coasting along, in a period of calm, another wave (or waves) hits you. It never DOES end, but, I just hope, for you, for me and all others on this journey, for a decent amount of time between the waves.

    Here's to some calm seas for you.

    Paula

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  • YellowRoses
    YellowRoses Member Posts: 20
    edited August 2018

    Hi Claudia.It's now been 10 days since I finished radiation to spine (3 fractions). Best news, it is OVER! (well at least for now. Yay!) Side effects tougher than zapping to brain (in June). Probably cause had 2 series of zaps in less than 8 weeks, so the fatigue is killer. But se specific to spine is not for sissies. Was warned about possible strep-like sore throat, but wow. Was told to gargle with Benedry(?!) which hasn't helped). Also loss of taste/abnormal tastes, loss of appetitie, Just overall, totally out of it.Finally taking the advice to rest more.

    Am hoping for long stable periods for everyone in this situation!


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  • YellowRoses
    YellowRoses Member Posts: 20
    edited August 2018

    Hi Nancy. As I just posted to Claudia above, radiation to spine is OVER!! Has been 10 days. Side effects for this latest bout of zapping has been much rougher than expected. But they say it's temporary. The worst is the killer fatigue (worst have experience) and the horrible sore throat. Unlike with tonsilitis, eating ice cream does NOT help. If food or drink is too hot or too cold, yikes.The good news is, it hurts only when I swallow, not when I talk. The bad news is, one swallows more than one talks!! More bad news: Has affected my sense of taste so chocolate tastes awful. Talk about life not being fair!

    As I wrote above, here's to long stable periods for all of us.

    Paula

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