CheeseQueen checking inn
Comments
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How is the a-fib?CheeseQueen57 said:Bingo- Stroke caused by a-fib
My cardiologist pinned the stroke on a-fIB. I'll begin protocol for that. Could have been a lot worse. Now cardiologist needs to coordinate with oncologist. Hope it goes smooth. Could have been a lot worse. Thanks for your support. I'm still in ICU but getting better.
Glad to have read down far enough to see that a-fib caused the stroke and that you have some answers. How are you doing now?
Billie
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Update
Well, I finally saw the neuro ophmalogist today. It was a 4 1/2 hour ordeal. After seeing the resident, we waited an hour in the exam room for the doctor. There's got to be a better way. He said my optic nerve continues to be swollen. He attributes either to my anemia due to chemo, the afib, or the amiodarone I'm on for the afib. Unfortunately there is no treatment. He told me to come back in a month unless it gets worse.
Tomorrow I am scheduled for my CT Simulation in preparation for external radiation. Any insights to prepare and get through that?
I'll have a CT scan on August 30th. I haven't had one since March before my surgery. Hoping for no surprises.
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CheeseQueen, I had Intensity
CheeseQueen, I had Intensity-Modulated Radiation Therapy (IMRT). Some info: http://www.radiologyinfo.org/en/info.cfm?pg=imrt They had me lay in a bean bag, sucked the air out of it so it formed to my body so I would always be in the same position for radiation and then I had a non-dye CT. I had to wait at least a week for my radiation because they build a plan on radiation intensity, etc...if you read the link above you will see why.
I always had an x-ray before each treatment so they could 'marry-up' the plan to the current x-ray since organs, shift, etc..and was told by the techs they can get within 1/1000 of where it was planned. (I did have to insert what looked like a glow-in-the-dark dilator. The first time the 2 male techs asked me if I wanted to insert it. I said, "uhhh, yeah". I appreciated that they asked and gave me the choice. Of course it needs to have lube on it so I did have to correct one young gal -- I can do that. I never saw her again - ha!)
For me, radiation was exhausting. The radiation to your pelvis, where so much bone marrow is, just zapped me and I would fall asleep at 7 pm. I remember sitting at my desk at the office just thinking I was never going to move.
I would recommend you up the protein if possible and (I'm sorry I just can't remember) take probiotics. Radiation to the pelvis can cause diarrhea, and I was shown a shocking study with women who did and who did NOT take probiotics during radiation. For me, I think it really helped.
In some ways it was much easier than chemo but it zapped me. I still remember.
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Stock up on Immondium
i found the radiation to be the easiest part of this although it did cause diahria. During the simulation they had me lay on a foamy form that the harden. It made a place to lay so that I was in the same position each time. I believe that the technician did there own ct scan so that the radiologist could map out exactly were to aim the radiation. They tatooed you will tiny pin pricks in several places and put ink on them so that they can line up the radiation machine each time . They advised me to stay on a low fiber diet, no fresh fruit or veggies and no whole grains. They hardest part of the radiation for me was holding still for the 20 minutes that mine took. I was also afraid I would fall asleep and fall off of the narrow table. They did play my choice of music and there was a window above with beautiful flowers.
Hugs and prayers, Lou Ann
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One thing about simulation
Though I ended up not having the external radiation, I did go through the simulation and have the tats to prove it. One thing they didn't tell me until I was there was that they wanted me to have a full bladder. You might check to see if that's the case for you, too, if no one has mentioned it. I ended up gulping down a huge glass of water in the waiting area.
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GREAT question, Chris. IEditgrl said:One thing about simulation
Though I ended up not having the external radiation, I did go through the simulation and have the tats to prove it. One thing they didn't tell me until I was there was that they wanted me to have a full bladder. You might check to see if that's the case for you, too, if no one has mentioned it. I ended up gulping down a huge glass of water in the waiting area.
GREAT question, Chris. I wasn't told that.
BTW - I never got the tatoos. I had dots drawn on me with permanent marker and then covered in plastic dots that didn't wash off in the shower and had to be replaced only once really.
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Thanks for all the advice
I'm ready for my adventure tomorrow. But since I posted about the amiodarone on my Caring Bridge site, 2 friends are appalled that the doctor would have prescribed that for me considering its toxic effects! especially to the kidneys. Now I'm not trusting my cardiologist and probably should consult someone else. This is all so tiring. The diseases don't kill you, the doctors can kill you with the treatment.
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Sounds like we'll be going through this together
CQ, I'm just a few days behind you. I have my simulation (my doctor calls it mapping) appt. on Friday and then should start daily radiation the week after next. About five weeks of that and then some still-to-be-determined number of brachys.
I have been instructed to have a full bladder for the simulation and each treatment. I'm supposed to drink 32 oz. of liquid before the appt. Really dreading that part a lot! Hello Depends!
I've also been told that I'll have the ink marks covered with tape rather than tattoos. Even with the tape, I don't know how the marks can last for six weeks.
I had my CT scan last week. My radiologist was pleased that it showed that lymph nodes, etc., are stable and that there's no sign of new tumors. One thing that is bothering me is that this was the first scan report that mentioned a 2 mm. nodule on one lung. That was also described as stable, though I don't see how they can know that if it wasn't noted in earlier scans. It may have to do with different people reading each of the scans. I'm still waiting to speak to my oncologists about the scan report. (I didn't actually see the report until after I saw the radiologist, so couldn't ask him about the nodule, and he didn't bring it up.)
Anyway--I hope things go well for you. It helps to know someone who is going through the same thing at the same time.
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They didn't mention the bladder
That would be the worst part for me!!!!
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Checking In!
Hey Warriors!
Just an update! Saw my cardiologist. Insisted on him taking me off amiodarone based on my review of the side effects ( blindness was one!!!). I will be seeing a cardiologist at Penn later in the month for a second opinion. We are having trouble managing the coumadin levels but that is par for the course, I understand. Eye still bothering me and is about the same. I'm afraid it won't be back to normal.
I saw my surgeon today and she said everything seems fine as far as she can see. Also saw my medical oncologist today and I won't see her for 6 months and I'll have a CT scan at that time. My CT scan I had this week showed NED!!!!! Yay! My last CT scan was in March before my surgery. The doctor made clear that doesn't mean there is not microscopic cancer cells lurking, but I'm gratefull for a clear scan.
I go for my simulation for the external radiation tomorrow and I anticipate starting that after labor day. I'm looking forward to putting this phase behind me.
Thanks for all your support! It's been truly a blessing.
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Thanks for the updateCheeseQueen57 said:Checking In!
Hey Warriors!
Just an update! Saw my cardiologist. Insisted on him taking me off amiodarone based on my review of the side effects ( blindness was one!!!). I will be seeing a cardiologist at Penn later in the month for a second opinion. We are having trouble managing the coumadin levels but that is par for the course, I understand. Eye still bothering me and is about the same. I'm afraid it won't be back to normal.
I saw my surgeon today and she said everything seems fine as far as she can see. Also saw my medical oncologist today and I won't see her for 6 months and I'll have a CT scan at that time. My CT scan I had this week showed NED!!!!! Yay! My last CT scan was in March before my surgery. The doctor made clear that doesn't mean there is not microscopic cancer cells lurking, but I'm gratefull for a clear scan.
I go for my simulation for the external radiation tomorrow and I anticipate starting that after labor day. I'm looking forward to putting this phase behind me.
Thanks for all your support! It's been truly a blessing.
I've been wondering. Stay out of trouble!
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NED!!!! That's the best news
NED!!!! That's the best news you have given us in a while. I hope you are continuing to heal and feel better CQ. Good luck on your treatment. And if there are any microscopic cells hanging around, the radiation should zap them away.
I'm glad you are going for a second opinion for your heart. That eye side effect is scary and since you experienced it first hand, it seems like your cardiologist would have taken you off that med without you having to demand it. sigh.....
Love and Hugs,
Cindi
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After all you have beenCheeseQueen57 said:Checking In!
Hey Warriors!
Just an update! Saw my cardiologist. Insisted on him taking me off amiodarone based on my review of the side effects ( blindness was one!!!). I will be seeing a cardiologist at Penn later in the month for a second opinion. We are having trouble managing the coumadin levels but that is par for the course, I understand. Eye still bothering me and is about the same. I'm afraid it won't be back to normal.
I saw my surgeon today and she said everything seems fine as far as she can see. Also saw my medical oncologist today and I won't see her for 6 months and I'll have a CT scan at that time. My CT scan I had this week showed NED!!!!! Yay! My last CT scan was in March before my surgery. The doctor made clear that doesn't mean there is not microscopic cancer cells lurking, but I'm gratefull for a clear scan.
I go for my simulation for the external radiation tomorrow and I anticipate starting that after labor day. I'm looking forward to putting this phase behind me.
Thanks for all your support! It's been truly a blessing.
After all you have been through, I am so glad you got some good news. NED May you dance with NED forever. Everything else will even out in the long run.
Hugs and prayers, Lou Ann
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So Happy!
Still wish you didn't have the other issues to deal with, but it's about time you had something postive happen for you! Here's to hoping the next CT is NED, too. It feels like we all ride the roller coaster together doesn't it? Today is a good day hearing this from you!
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NED for you YEA!!! I wouldKvdyson said:Woo hoo - congratulations!
CQ, congrats on that great news!! You certainly deserve it considering all that you've endured these past few months. Here's to a whole lifetime of only looking forward and to NED forever! Kim
NED for you YEA!!! I would want all the other side effects gone too. Wishing you the best for that.
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Whoa, thrown for a loop
I didn't know I'd get my first radiation treatment along with the simulation today and I was totally unprepared for the nausea. Fortunately we had planned to go to the beach and I had my medication in the car and quickly took some Zofran. Took about an hour but I was okay. Doctor should have told me to take it before!! Car ride home was miserable and needless to say, no beach because they scheduled me for 9:00 tomorrow morning! Let the games begin! I thought I wouldn't start till after Labor Day. : (
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