CheeseQueen checking inn
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Cheese queen, I'm so sorry
Cheese queen, I'm so sorry for all that you have been through! Totally unfair to say the least. My oncologist referred me to the bleeding and clotting institute here. It took me forever to get in, but I liked the doc. He has me on the injections of Lovastat (I'm sure I misspelled this) partly because I many years ago had a pulmenary embolism and of course the chemo deal and having a port. He said the port can cause inflammation and clots. I hope they can give you the right meds to prevent clots. I know it's a difficult balancing act.:( Many prayers for you!
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Enjoy that football game with your son!CheeseQueen57 said:Update
Well, I'm out of the hospital. The neurologist said it was not a new stroke and after holding Eliquis, they started it again. Bt she explained to me that it can't stop all clots, just most so I can suffer clots in the future. And she confirmed what Eldri said that a diagnosis of cancer (not the treatment) makes you more prone to clots. Great! So will be looking over my shoulder for cancer and a stroke always. This sucks. But trying to take one day at a time. She says I need to see opthamologist too to see if it is eye related.
Needless to say, I missed this week's chemo which I'm none to happy about. And as wonderful as Fox Chase is, I hate their out patient call center and I will be lodging a complaint to the higher ups tomorrow about how bad it sucks. My surgeons have given me their personal cell to reach me, but my oncologist forces you to go through the call center. This has not been acceptable and I am going to tell her that in my next appointment in addition to making a formal complaint. When you are in a life and death situation, as we all are, you need to be able to reach your doctor. This was even during normal business hours. Thank God for my PCP friend who lives across the street who has always been there for me.
On a happier note, my son will be moving up from Orlando this weekend to the DC area which is only a couple hours from me and my husband let me get season tickets to Maryland football games so we can go with my son to the football games. My son went to Maryland and I going to a Big 10 school (MSU) enjoy college football. Maryland even plays MSU at home-a bonus for me. So I have to get well enough to enjoy this time!
Thanks for ypur support ladies! It means the world to me. Now if I just could get some sleep!
CQ, keep your eyes on the prize (no pun intended) - getting well enough to enjoy that football game with your son! I'm glad to hear that you're stabilizied and out of the hospital. Now that you're home you'll be able to focus on doing the things that make you healthier and happy. Soon you'll be done with chemo, NED and ready to set your next goal.
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Thanks for all the good wishes
I was able to reschedule my chemo for tomorrow (Friday) so I won't miss a week. Yay! Pray that my blood levels stay good enough to get my next treatment on the following Wednesday. With a lot of strings pulled, I see the ophthomologist on Monday. Boy, most doctor's offices are not very patient-friendly. Thank GOD for my PCP friend and neighbor ( she lives right across the street). I don't know what I would do without her.
Still frustrated by speech, but I think that is just going to take some time.
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What a great observation MAbound!MAbound said:Not asking, not looking
I know I have advanced high grade cancer, so I think I'm happier not knowing my odds on recurrance becuase I know I'm high risk, irregardless. I'm learning more about everything else, but odds aren't written in stone and would only make living with this harder. Sometimes ignorance is bliss and I want to focus on the positive and not worry about what I can't change at this point. I get a lot of good, positive energy from this website hearing how others are NED even when more advanced or agressive than what I have and it keeps me looking forward rather than feeling sorry for myself. Thank you everyone!
Yup, I totally understand. There is a time for fact-finding and a time for just focusing on what you can do. I am so glad that while I was undergoing treatment I did NOT research online and read about all the dismal statistics for undifferentiated small cell carcinoma of the uterus. For one thing, most of the research online is already out of date. For another, sometimes you just have to work with your doctors, family, etc. and magnufacture your own sense of hope. Later I really appreciated how lucky I am to be here after reading stuff online...later. I would have just been even more scared if I read that stuff while undergoing treatment! It has been about 7 years NED, which is fantastic compared to the various 2% survival, or whatever listings! As the wise women on this site remind us, we are each our own statistic.
Cheers,
Susan
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I want off this ride!
Oh, another adventure! After spending 7 1/2 hours in Wills Eye ER it was determined that I have some kind of ischemic optic neuropathy, e.g., swelling of the optic nerve. And in a comedy of errors, the only machine that could do an MRI of the optic nerve was broken down for hours. So we have to go back at 8:00 PM tonight for an MRI and see a neuroophthalmologist. I'm considering skipping chemo this week. I have only one carbo treatment left and I understand this could cause eye problems. I just have 3 taxol treatments left. I'll see what my oncologist says tomorrow. This is a wild ride, that's for sure.
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Chemo definitely affects theCheeseQueen57 said:I want off this ride!
Oh, another adventure! After spending 7 1/2 hours in Wills Eye ER it was determined that I have some kind of ischemic optic neuropathy, e.g., swelling of the optic nerve. And in a comedy of errors, the only machine that could do an MRI of the optic nerve was broken down for hours. So we have to go back at 8:00 PM tonight for an MRI and see a neuroophthalmologist. I'm considering skipping chemo this week. I have only one carbo treatment left and I understand this could cause eye problems. I just have 3 taxol treatments left. I'll see what my oncologist says tomorrow. This is a wild ride, that's for sure.
Chemo definitely affects the eyes! I had the bright turquoise lights flashing, constant watering, blurred vision and muscle spasms in my right eye. I am still waiting for my vision to quit changing day-by-day to get my eyes checked again and new glasses. I am so sorry this is happening to you!!! (((Susan))) Let us know what the doctors say!
Love,
Eldri
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Vision damageCheeseQueen57 said:I want off this ride!
Oh, another adventure! After spending 7 1/2 hours in Wills Eye ER it was determined that I have some kind of ischemic optic neuropathy, e.g., swelling of the optic nerve. And in a comedy of errors, the only machine that could do an MRI of the optic nerve was broken down for hours. So we have to go back at 8:00 PM tonight for an MRI and see a neuroophthalmologist. I'm considering skipping chemo this week. I have only one carbo treatment left and I understand this could cause eye problems. I just have 3 taxol treatments left. I'll see what my oncologist says tomorrow. This is a wild ride, that's for sure.
CQ, I am so, so sorry that you are going through all of this. Did you have DaVinci surgery? If so, I recall that there was a post about a relationship to the face-down position for the surgery and vision problems. Praying that your doctors can figure all of this out for you. Kim
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And the hits just keep on coming
So, because of my eye problems, most likely little clots, my doctor has decided to switch me from Eliqis to Coumadin. Apparently this involves 4-5 day hospital stay. What!!!!!! So I am back in the hospital. I didn't get chemo today. I decided I wouldn't get the last dose of carbo but may get the final 3 doses of taxol, but the oncologist was fine with me stopping all together at this point. I've had 14 weekly doses of taxol and the once very 3 weeks of carbo so she says we have treated aggressively
What a wild ride! Thanks for all your support
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CQ
I cannot believe all of the **** you are having to deal with! 4-5 days in the hospital to switch medication? I wonder why. I sure hope they get this stuff squared away for you soon. Hang in there, kiddo, and I hope you are back in your own bed sooner rather than later.
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So much!
I can't believe how much you've been going through and all of the treatment decisions you've been faced with making. I can understand you wanting to get off this "ride". We'd all would rather not be on it! Sending you and your family my thoughts and prayers that the therapy you've already had will be enough for now, so you can catch your breath and deal with the difficulties you currently have on your plate.
You don't have a bio posted so I'm not sure without sifting through all of the threads posted since you joined what your whole story is, but did your post-op pathology include testing for hormone receptors that you might be eligible for that kind of therapy to stop/slow tumor cell growth after chemo/radiation therapy? Doesn't have as serious side effects that chemo and radiation have and if it slows recurrance from happening it might be worth a discussion or two about it with your gyn oncologist. I don't think tumeric/curcumin as discussed in other threads would be an option for you because of meds you're currently on for recent problems.
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Wow CQ... You and Eldri seem
Wow CQ... You and Eldri seem to hit that unwanted jackpot of issues with chemo. I'm glad the docs feel like you have had enough to be effective. Your body is telling you that too! I hope you start healing now and get back to some kind of normal asap! So sorry you have had to go through so much stuff.
Sending you positive energy of healing.
Love and Hugs,
Cindi
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CheeseQueen Update
Well, after spending 4 days in the hospital trying to regulate the Coumadin they sprung me. Yester day I got a tranesophageal echocardiogram that was negative but my clotting labs were to high. So my acupuncture doctor wasn't comfortable doing acupuncture today.
I finally got an appointment with the neuroophamologist for Monday morning. Mind you, this is 3 weeks after i totally lost vision in one eye and it's still not right. I had to practically sacrifice my first born to get the appointment despite being seen in the Wiils Eye Emergency Room. Something is very wrong with this system. Of course you can't get past the gatekeeper nazi receptionist and I've come to the conclusion that my own ophamologist is worthless if you have a problem.
I have decided to discontinue chemo after 14 out of 18 treatments and despite the fact that I'm not going to ring the bell, my oncologist is comfortable with that. I can't believe the chemo didn't have something to do with my current problems and hopefully it was enough. I'll meet with the radiologist oncologist tomorrow and I've reviewEd the thread on this and it's given a lot of good questions to ask. Thank you all who contributed to that.
Still have what I perceive as unacceptable speech impairment though others tell me it's not that bad. I know what I was like before. I taught classes and gave lectures. I sure couldn't do that so without a lot of stumbles. It's very frustrating.
I'm trying to get pumped up to face the radiation. I suppose it's not as bad as chemo but has it's own challenges which demands the proper attitude to overcome. Of course, that's the most challenging part but the part you have most control
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CQ, so glad you are out of
CQ, so glad you are out of the hospital and finished with chemo. You always have the right attitude so you will get through the radiation with minimal issues! Do you know yet what your treatment will be?
Give yourself a break on your speech. Hopefully it will come back to previous levels sooner than later. It really hasn't been that long since all that happened to you.
Love and Hugs,
Cindi
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Glad you are homeCheeseQueen57 said:CheeseQueen Update
Well, after spending 4 days in the hospital trying to regulate the Coumadin they sprung me. Yester day I got a tranesophageal echocardiogram that was negative but my clotting labs were to high. So my acupuncture doctor wasn't comfortable doing acupuncture today.
I finally got an appointment with the neuroophamologist for Monday morning. Mind you, this is 3 weeks after i totally lost vision in one eye and it's still not right. I had to practically sacrifice my first born to get the appointment despite being seen in the Wiils Eye Emergency Room. Something is very wrong with this system. Of course you can't get past the gatekeeper nazi receptionist and I've come to the conclusion that my own ophamologist is worthless if you have a problem.
I have decided to discontinue chemo after 14 out of 18 treatments and despite the fact that I'm not going to ring the bell, my oncologist is comfortable with that. I can't believe the chemo didn't have something to do with my current problems and hopefully it was enough. I'll meet with the radiologist oncologist tomorrow and I've reviewEd the thread on this and it's given a lot of good questions to ask. Thank you all who contributed to that.
Still have what I perceive as unacceptable speech impairment though others tell me it's not that bad. I know what I was like before. I taught classes and gave lectures. I sure couldn't do that so without a lot of stumbles. It's very frustrating.
I'm trying to get pumped up to face the radiation. I suppose it's not as bad as chemo but has it's own challenges which demands the proper attitude to overcome. Of course, that's the most challenging part but the part you have most control
Glad you are home and finished with the chemo. It sure can take a toll on our bodies and you,need some,time,to,rest so all of your,body parts can recover and start to work properly. This is hard enough without having to wait forever for appointments. Sending hugs and prayers your way, Lou Ann
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