Cheese Update
Comments
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MegaceCheeseQueen57 said:GI Appt
I have GI appt at Fox Chase on Friday. Maybe I hold the Megace too if I have to hold Eliquis? BTW CT Scan I got Friday showed no change. I guess that's positive.
I kept taking the Megace but had to hold the curcumin and baby aspirin. Your GI doctor will want to know everything you're taking whether it's an Rx or OTC, so make a list with dosages and frequency of taking and he/she will tell you what to hold.
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Good LuckCheeseQueen57 said:GI Appt
I have GI appt at Fox Chase on Friday. Maybe I hold the Megace too if I have to hold Eliquis? BTW CT Scan I got Friday showed no change. I guess that's positive.
Hi Cheese,
Good luck at your GI appointment on Friday. Hopefully your bleeding issue will turn out to be nothing more than hemorrhoids. I didn't know I had them until after radiation, and I have had intermittent rectal bleeding for many years now, especially on days I go a lot due to my microscopic colitis (unrelated to my cancer treatment). In your case, I'm wondering whether the Eliquis might also be playing a role, since from what I saw online, one of the side effects is GI bleeding. I'll be interested to hear what the gastroenterologist has to say.
MoeKay
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The Hits Just Keep on Coming!
So, I had a visit on Tuesday with the NP I see for my pelvic floor problems. This was just going to be sort of a goodbye visit because obviously I have bigger issues to deal with now. She said, let's just do a urinanaysis to make sure there are not any cancer cells in your urine. So low and behold...the urine test came back with rare atypical urothelial cells and red blood cells present. Great. Call in to ocologist for next steps. I really want off this ride.
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Oh Cheese, so sorry! I'm sure
Oh Cheese, so sorry! I'm sure you are getting worn very thin. This really sucks big time. Please come back and let us know what they find out. I hope it proves to be nothing since your scan was just done. Hugging you my friend.
Love,
Cindi
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Dang!CheeseQueen57 said:The Hits Just Keep on Coming!
So, I had a visit on Tuesday with the NP I see for my pelvic floor problems. This was just going to be sort of a goodbye visit because obviously I have bigger issues to deal with now. She said, let's just do a urinanaysis to make sure there are not any cancer cells in your urine. So low and behold...the urine test came back with rare atypical urothelial cells and red blood cells present. Great. Call in to ocologist for next steps. I really want off this ride.
Oh Cheese, I wish you do get a break! Hugs and prayers
Kathy
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Frustrated
So after wasting my entire day waiting for phone calls ( I was on the phone 5 times with the call center and various nurses) they tell me this is nothing to be concerned about. Meanwhile, everything I read contradicts this. The urologist office keeps saying “but you had an unremarkable cystoscopy in February“. In my mind a lot could happen in 9 months. I’m kind of losing confidence in my team. Am I overreacting? No word yet from my oncologist. My NP ordered a FISH Test. I’m half inclined to get it. I’m so confused and frustrate!
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Take a breath
Maybe I'm wrong, but I can't help but feel you are in panic mode with these new symptoms that have popped up for you. I feel so helpless not knowing what else to tell you that you can do that you aren't already doing and maybe that's the point. You really have things well in hand and even if your current team isn't reacting the way you think they should to these new developments, you have that trip to MD Anderson coming up where you can get their take on these things. We always tell new members to be patient and take things step-by-step in spite of the waiting being so hard and I guess that's just as hard advice for us veterans to remind and apply to ourselves as well in such circumstances. My sympathies Cheese with all that you are having to deal with. I know it's frightening and maybe you might want to consider an anti-anxiety med like some have suggested in other threads to help you cope. I sure think I would need it at this point! You need your rest to keep on going with what you have to do. Sending all my strength and prayers that this will all work itself out soon and that you end up with the best plan of action.
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Deep Cleansing Bre
After doing nothing (I did take my 2.4 mile walk) but binge watching tv and eating the peanut M&Ms I bought for the trick or treaters I’m ready to put my big girl panties and get myself together. I’ll see the GI doc tomorrow, get my hair trimmed Maybe I need some of Daylady’s pot. It’s legal for medical reasons here in PA but I don’t think there are any dispensaries yet. However, I’m sure my husband has relatives that would have no trouble finding me some.
. I’ll get it together. Just having a little pity party today. Thanks for the pep talk!0 -
Way Forward
So I saw the GI doc this morning. Lovely person. We agreed to hold off on colonoscopy for now, although he said he would do without holding Eliquis. He said bleeding is probably hemorroid or something related to some addition circulation that develops related to radiation. He said it’s not unusual for this to happen a year out from radiation. He also said my left groin pain was probably andominal all pain and suggested lidocaine patches and referral to pain mgt (I had already got referral from my PCP to pain mgt to see if acupuncture would help). This is new info. He also said that peritoneal carcinomas doesn’t cause pain. So we agreed to wait to do colonoscopy until bleeding should occur again.
After 8 calls back and forth to Fox Chase, the urologist finally called me back and said she would schedule me for a cystoscopy. That’s all I wanted, to hear from her. But she said she doesn’t think there’s cause for alarm at this point (famous last words!). So I guess my persistence paid off yesterday but it shouldn’t take all that. Oh well, on to MD Anderson on Wednesday.0 -
alternatives to colonoscopy
I wonder if ordering the following non-invasive testing would make sense. They are not as informative as a colonoscopy but I am sure just getting the test back negative would give you a peace of mind.
- Guaiac-based fecal occult blood test (gFOBT)
- Fecal immunochemical test (FIT)
Last night I had a sharp pain during bm which is something I experienced before the second surgery. Since my big mass was touching the colons I thought I would not experience that now that the mass is gone. But it is still there. I am going to ask for these tests on Monday. I don't think I am positive for Lynch syndrome. But would like to confirm that on Monday.
Safe travels!
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dang Cheese! This is all too
dang Cheese! This is all too much! You need a break!! Also, on the subject of colonoscopy - I insisted on having one with all my digestive issues. The doctor tried but it was incomplete because he wA worried he would cause major problem due to a curve and narrowing . AnywY I then had. Virtual colonoscopy . SMe prep needed, but you are awake and yes they do stick something you know where etc. not the most fun but I did have a very nice technician perform it. Results no polops yet I still don’t feel I’m free and clear. Sending many many hugs!!
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Never Fly United- Especially Basic Economy
So, I’m on my way to Houston. Who knows if I’ll ever make it. United screwed with me so we missed our 5:50 AM flight. They rebooked us on a 10:00 AM through Chicago, gave us middle seats in the end row and are refusing to assign seats for the next leg of the flight until we get to Chicago. From checking we can see there’s only 3 seats right now. Instead of getting into Houston at 9:00 AM we are supposed to get in at 5:00. I even pulled the cancer card and cried to no avail. These United agents in Philly are hard.
On a lighter note, I just booked travel to Newfoundland for the first week of December (can’t be worse than traveling today!) for my uncles’s 80th surprise birthday party. I haven’t been up there in over 25 years. Figure it will be maybe my last chance to see all my mother’s family.
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I like flying Delta. I haveCheeseQueen57 said:Never Fly United- Especially Basic Economy
So, I’m on my way to Houston. Who knows if I’ll ever make it. United screwed with me so we missed our 5:50 AM flight. They rebooked us on a 10:00 AM through Chicago, gave us middle seats in the end row and are refusing to assign seats for the next leg of the flight until we get to Chicago. From checking we can see there’s only 3 seats right now. Instead of getting into Houston at 9:00 AM we are supposed to get in at 5:00. I even pulled the cancer card and cried to no avail. These United agents in Philly are hard.
On a lighter note, I just booked travel to Newfoundland for the first week of December (can’t be worse than traveling today!) for my uncles’s 80th surprise birthday party. I haven’t been up there in over 25 years. Figure it will be maybe my last chance to see all my mother’s family.
I like flying Delta. I have their card and always get great survice. I fly to Houston often as my daughter lives in TX. One reason Delta- I avoid Chicago like the Plague! I’m an Illinois gal and my biggest problems with flying Chicago:(
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What an absolute nightmare!
Good grief, Cheese, I wish I could make this all better. I THINK you must have arrived in Texas by now. Hope all goes well with your appointment. I understand your panic and need for information.
Hugs,
Suzanne
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Greetings from Houston
Well, I think my appointment went okay at MD Anderson. I saw Dr Shannon Wesstin. She had basically had reviewed all my records. They read the slides and concurred with the original diagnosis and that the reoccurrence is endometrial primary. Her advice was to continue the Megace and see if by chance it will work. She did differ with my Fox Chase doc in that she thought there was some actionable things from the Foundation One report in some clinical trials. For most clinical trials,I have to have measurable tumor, which I don’t right now. Although she did mention one trial that I would be eligible for without mesearable tumor. She mentioned PARP. I left there more hopeful. My next step is to see how Megace works. If the disease progresses Dr Westin will work together with Dr Martin (she said she knew Dr Martin) and me to determine maybe between Fox Chase and MD Anderson an appropriate clinical trial which many appear to have better results than chemo. I also the integrative oncologist but was not impressed. Just told me to eat Mediterranean ( I’m a dietitian so this was not too informative).
So, since we’re in Houston until Saturday, we rented a car and are heading to Austin for the night. I love Austin.
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Alls well that ends wellCheeseQueen57 said:Greetings from Houston
Well, I think my appointment went okay at MD Anderson. I saw Dr Shannon Wesstin. She had basically had reviewed all my records. They read the slides and concurred with the original diagnosis and that the reoccurrence is endometrial primary. Her advice was to continue the Megace and see if by chance it will work. She did differ with my Fox Chase doc in that she thought there was some actionable things from the Foundation One report in some clinical trials. For most clinical trials,I have to have measurable tumor, which I don’t right now. Although she did mention one trial that I would be eligible for without mesearable tumor. She mentioned PARP. I left there more hopeful. My next step is to see how Megace works. If the disease progresses Dr Westin will work together with Dr Martin (she said she knew Dr Martin) and me to determine maybe between Fox Chase and MD Anderson an appropriate clinical trial which many appear to have better results than chemo. I also the integrative oncologist but was not impressed. Just told me to eat Mediterranean ( I’m a dietitian so this was not too informative).
So, since we’re in Houston until Saturday, we rented a car and are heading to Austin for the night. I love Austin.
sounds like your appointment made up for the difficulty getting there. Enjoy Austin. I've never been but would like to.
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