1. < Gynecologic Cancers

had my first appt

Posted by MommaCandy @mommacandy, Jan 27 8:19pm

well i gotta say, i'm a little overwhelmed.. i finally got an appt with UVA, was supposed to have been Jan 31...they called last Mon asking if I wanted to take the cancellation on Wed...ABSOLUTELY!!! so i went in on Wed, had initial consult, exam etc and boy did they move from there...which i guess is a good thing....
yesterday i had lab work done, a chest xray, CT scan with contrast AND a biopsy all in one day...i'm TOLD one of the samples from the biopsy will be going to Mayo...idk why....but hey i'm ok with that...
they have me scheduled for a "total abdominal hysterectomy, bilateral salpingo oopharectomy, omentectomy, tumor debulking, possible bowel resection/possible colostomy and all other indicated procedures" ...Thats taken straight off the consent form i signed...basically from what i understand they are emptying my pelvic cradle of anything to do with reproduction, a fatty tissue layer, any lymph nodes in the area and all spots of any kind of tumors...
depending upon what the biopsy shows i guess as to the KIND of ovarian cancer it will determine whether they prefer surgery first or chemo first. the two chemo drugs being looked at carboplatin and Paclitaxel or something like that.. anyways, they ran a CA-19 which came back at 7 and a CA-125 which came back at 1536
so just waiting on CT and biopsy results...
so has anyone has this detailed of a surgery (Dr called it a radical hysterectomy) and can give any tips? as it is, it may still be postponed but trying to prepare mentally...

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

MommaCandy | @mommacandy | Feb 5 4:56pm
In reply to @lathomasmd "Wow! Gorgeous! It looks like you have enough to make a wig. Or two!" + (show)
@lathomasmd

Wow! Gorgeous! It looks like you have enough to make a wig. Or two!

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aww thank you... i was hoping i could find someone local...no luck yet...but i went from that to this
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1 reply
celia16 | @celia16 | Feb 5 5:31pm
In reply to @mommacandy "aww thank you... i was hoping i could find someone local...no luck yet...but i went from..." + (show)
@mommacandy

aww thank you... i was hoping i could find someone local...no luck yet...but i went from that to this

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@mommacandy ,
I realize the change was quite emotional, but the cut looks very nice. Sending hugs. You are so resilient.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 7 5:43pm
In reply to @sullycat "wishing you the best for your upcoming treatment. Sharing my experience. I had the chemo/surgery/chemo protocol..." + (show)
@sullycat

wishing you the best for your upcoming treatment. Sharing my experience. I had the chemo/surgery/chemo protocol with carboplatin and Paxcitel in 2022. I was full of fluid which is not uncommon for later stage ovarian cancer, so the first procedure was draining my ascites-filled abdomen (I forget what that procedure is called right now) and sending off to pathology with multiple ct scans prior to surgery. I was warned before surgery that the surgeon would not know what had to be removed until they opened me up (very similar to the warning you received about the possibilities of bowel resection as well as removal of all the reproductive organs and the omentum). I ended up with the full hysterectomy, bilateral salpingo oopharectomy, and they removed the visible tumor from my omentum and removed my appendix. I did not have to have a bowel resection. I found the uncertainty about what they were going to take out pretty stressful, balanced with the hope that the surgeon could remove as much as possible during the debulking procedure. I spent about a week in the hospital and left with the same instructions as @naturegirl5. While not the most fun I have had, they controlled the pain well and I made a slow but steady recovery. I was grateful that I even was able to have the surgery since that was not a guarantee. I am stage IIIB high grade serous and BRCA 1 positive. Assuming you will get the genetic testing too as part of your treatment to help with your treatment plan.

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Welcome, @sullycat. So helpful to hear your story.

Are you currently on any treatment? How are you doing today?

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MommaCandy | @mommacandy | Feb 17 12:40pm

well i did the first chemo on Wed...not bad at all , nothing like i expected...LOT of pain in the port area but that is really calming down now...
however no real issues other than pain til yesterday...i've started having pain in my quads, IT bands, and hips...in addition to normal places...nausea is AWFUL today, taking compazine and zofran and on day 3 of the steroid.. i had a seizure about 6 am but i DO have a seizure disorder (99% are while i'm sleeping, the other rare ones are usually if i've missed multiple doses of meds or extremely exhausted) and pain can trigger them more often than not, so i figured all the new pains is what brought that on...i've slept most of the morning so i am feeling some better...they tried me on tramadol, which doesn't work well unless i take naproxen with it, and 5mg oxycodone...which again isn't strong enough to last 4 hours...both seem to last about 3 hours so i've been alternating them...they tried to give me percocet but i can't take anything with tylenol in it...so i guess Mon i'll be asking for something else...
do you all know anything stronger that doesn't have tylenol that is often prescribed? i don't think they've ever had to deal with a tylenol allergy because its kinda rare...and it makes me horribly sick, nauseous fatigued, etc and i sure don't need that on top of the chemo...

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2 replies
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Feb 17 6:55pm
In reply to @mommacandy "well i did the first chemo on Wed...not bad at all , nothing like i expected...LOT..." + (show)
@mommacandy

well i did the first chemo on Wed...not bad at all , nothing like i expected...LOT of pain in the port area but that is really calming down now...
however no real issues other than pain til yesterday...i've started having pain in my quads, IT bands, and hips...in addition to normal places...nausea is AWFUL today, taking compazine and zofran and on day 3 of the steroid.. i had a seizure about 6 am but i DO have a seizure disorder (99% are while i'm sleeping, the other rare ones are usually if i've missed multiple doses of meds or extremely exhausted) and pain can trigger them more often than not, so i figured all the new pains is what brought that on...i've slept most of the morning so i am feeling some better...they tried me on tramadol, which doesn't work well unless i take naproxen with it, and 5mg oxycodone...which again isn't strong enough to last 4 hours...both seem to last about 3 hours so i've been alternating them...they tried to give me percocet but i can't take anything with tylenol in it...so i guess Mon i'll be asking for something else...
do you all know anything stronger that doesn't have tylenol that is often prescribed? i don't think they've ever had to deal with a tylenol allergy because its kinda rare...and it makes me horribly sick, nauseous fatigued, etc and i sure don't need that on top of the chemo...

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@mommacandy It's good that the chemotherapy infusion was OK on Wednesday. Now that you have the port I hope you won't have the pain again.

I haven't had chemotherapy however quite a few of us in this support group have and I hope that they will bring in their thoughts, comments, and suggestions for you. The pain you're experiencing sounds terrible to me and I hope that when you contact your cancer care team on Monday that they will have some other options for you. Does the medication help with the nausea?

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1 reply
celia16 | @celia16 | Feb 17 11:59pm
In reply to @mommacandy "well i did the first chemo on Wed...not bad at all , nothing like i expected...LOT..." + (show)
@mommacandy

well i did the first chemo on Wed...not bad at all , nothing like i expected...LOT of pain in the port area but that is really calming down now...
however no real issues other than pain til yesterday...i've started having pain in my quads, IT bands, and hips...in addition to normal places...nausea is AWFUL today, taking compazine and zofran and on day 3 of the steroid.. i had a seizure about 6 am but i DO have a seizure disorder (99% are while i'm sleeping, the other rare ones are usually if i've missed multiple doses of meds or extremely exhausted) and pain can trigger them more often than not, so i figured all the new pains is what brought that on...i've slept most of the morning so i am feeling some better...they tried me on tramadol, which doesn't work well unless i take naproxen with it, and 5mg oxycodone...which again isn't strong enough to last 4 hours...both seem to last about 3 hours so i've been alternating them...they tried to give me percocet but i can't take anything with tylenol in it...so i guess Mon i'll be asking for something else...
do you all know anything stronger that doesn't have tylenol that is often prescribed? i don't think they've ever had to deal with a tylenol allergy because its kinda rare...and it makes me horribly sick, nauseous fatigued, etc and i sure don't need that on top of the chemo...

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Thanks for the update. I sure hope they can find a med that works for you without Tylenol. I didn’t realize the treatments caused so much pain. Sure hope that improves. Sending healing wishes and warm thoughts your way! 🧸

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MommaCandy | @mommacandy | Feb 18 8:28am
In reply to @naturegirl5 "@mommacandy It's good that the chemotherapy infusion was OK on Wednesday. Now that you have the..." + (show)
@naturegirl5

@mommacandy It's good that the chemotherapy infusion was OK on Wednesday. Now that you have the port I hope you won't have the pain again.

I haven't had chemotherapy however quite a few of us in this support group have and I hope that they will bring in their thoughts, comments, and suggestions for you. The pain you're experiencing sounds terrible to me and I hope that when you contact your cancer care team on Monday that they will have some other options for you. Does the medication help with the nausea?

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for the most part it does help with the nausea, pain is starting to subsize, this biggest issue i'm having is the aftereffects of the seizure, had another one during the day, again i think it was due to exhaustion...i've slept pretty much off and on for 24 hours and feel pretty good this morning all things considered...

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MommaCandy | @mommacandy | Feb 19 11:42am

looking for ideas on foods to eat that don't taste foul on chemo.....every single food i've tried has a metallic foul taste to it, is this normal? am i missing something?

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2 replies
celia16 | @celia16 | Feb 19 5:34pm
In reply to @mommacandy "looking for ideas on foods to eat that don't taste foul on chemo.....every single food i've..." + (show)
@mommacandy

looking for ideas on foods to eat that don't taste foul on chemo.....every single food i've tried has a metallic foul taste to it, is this normal? am i missing something?

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That’s terrible. I hope you get some input on that. I’ve never had chemo, so I’m no help. I have had a bitter taste in my mouth since I got post covid syndrome last year. I taste bitter, regardless of what I eat. So, I know this can be very stressful.

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aardvark2118 | @aardvark2118 | Feb 20 10:43am
In reply to @mommacandy "looking for ideas on foods to eat that don't taste foul on chemo.....every single food i've..." + (show)
@mommacandy

looking for ideas on foods to eat that don't taste foul on chemo.....every single food i've tried has a metallic foul taste to it, is this normal? am i missing something?

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Hi. I think that is normal. I experienced the same thing for 2-3 days after each cycle and then it went away. No help but I had a craving fir Taco Bell tacos the second day after every chemo. Was the only thing that tasted good. Probably not the most nutritious but it did the trick

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