My latest CEA- it went slightly down!
I got my results back from my recent CEA draw, which took place this past Tuesday, right before chemo. Drumroll... it went down 7 points! Now, it still is up pretty high- at 312, compared to 319 the time before. BUT... it didn't go up, as I feared it would, so I am relieved about that! Last time it went up to 319 from I think 259. So that was quite a jump, so you can see why I'd be relieved that it went down a bit this time and not up more.
I am still experiencing nausea and pain, I believe from the recurrent rectal tumor. This extra pain and pressure started about a week and a half ago. I had chemo Tuesday and the antinausea meds always plug me up a bit, so I actually had no pain or pressure Tuesday or Wednesday. But when it started to "break loose" Thursday, as it always does about then, oh it was bad. I put a request in to get a referral to see the colorectal surgeon. It went through and was approved quickly by my HMO, but when I called their office to see if I could schedule an appt, I was told all appts are booked through the end of June and then she's going on a 3 week vacation. The nurse could see it was kind of urgent, so she said she'd call back and let me know if they could squeeze me in. That was Tuesday. Yesterday/Thursday, I got a call back from the nurse saying they hadn't forgotten me, but the surgeon (Dr. Ramamoorthy at UCSD) was very busy and she wanted to talk to me before scheduling anything. I was told she'd be calling me Friday (which is today) in the afternoon after she finishes her day. It's now almost 4 p.m. and I haven't gotten the call yet, so she hopefully will still call. I'm getting frustrated at this point. This morning, when the pain hit again after a bowel movement, I writhed in pain for close to 2 hours. Even 3 Advil didn't do much. I don't have any stronger pain meds & really don't want to take any. Anyone know of any natural remedies to deal with pain?
Lisa
Comments
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Yeah Lisa!!!!!
I have been waiting for your post to hear your news! I am so happy the CEA is starting to move in the RIGHT direction...keep it going down, down, down. Sorry to hear that you are in so much pain. I hope you hear from the surgeon soon. Can you see Dr. Lowy instead since this surgeon will be out of town? I am sorry that I don't know of any other pain remedies other than medications. Praying that your pain goes away soon.
Hugs,
Sara0 -
I had that painsasjourney said:Yeah Lisa!!!!!
I have been waiting for your post to hear your news! I am so happy the CEA is starting to move in the RIGHT direction...keep it going down, down, down. Sorry to hear that you are in so much pain. I hope you hear from the surgeon soon. Can you see Dr. Lowy instead since this surgeon will be out of town? I am sorry that I don't know of any other pain remedies other than medications. Praying that your pain goes away soon.
Hugs,
Sara
And the only thing that helped me was IV drugs, I cannot imagine trying to manage it with Advil...
My Oncologist sent me to the ER. Probably sped my surgery up by two to three weeks as the Hospital and the Surgeon move in-patients to the front of their list.
All that said, the surgery brought a whole new pain experience, though one that did get better.0 -
Surgeons are
notorious for being late... but then that's probably because it's very likely their operations run into overtime. OR they get called back on their way out the door for this emergency surgery or that emergency surgery. Freaked me out the last time I was in for surgery and my surgeon stopped in to check on me at 9 o'clock at night...made the comment that he had had a short break, had two more surgeries to go before he could go home, but wanted to stop in to see how I was doing. I was FLOORED.
Hope you got that callback Lisa, and hope you can get in quickly to get that taken care of. Wading through pain really sucks!0 -
i Love the new!Lisa!PhillieG said:Hi Lisa
Congrats on the lower CEA, that's great news.
I do know that while narcotics can work for pain, they also slow down the bowels so that's not a good choice. I think you know what my choice medicinal "cure all" is.
MJ does help with pain relief too.
-phil
you know i Really love it!.
Hope your doc takes care of you very soon!.
Have a good weekend among your flowers ,lol.0 -
BlakeBuckwirth said:I had that pain
And the only thing that helped me was IV drugs, I cannot imagine trying to manage it with Advil...
My Oncologist sent me to the ER. Probably sped my surgery up by two to three weeks as the Hospital and the Surgeon move in-patients to the front of their list.
All that said, the surgery brought a whole new pain experience, though one that did get better.
Hmm... thanks for commenting. My oncologist has been out of town all week- due to be back Monday, so I haven't even been able to tell him about any of this. The nurses there know & they're the ones who put in the referral to the surgeon for me. It's now 7:15 p.m. & no call from her- can't imagine she's still going to call this late. So I'm disappointed in that. I'm thinking she'll probably want me to have a colonoscopy or a sigmoidoscopy, the kind with ultrasound. My original tumor went through the bowel wall & they could only tell that with the ultrasound, not the regular kind of colonoscopy/sigmoidoscopy.
Buck, when you had your surgery, did you have an ileostomy? What kind of surgery did you have? I don't remember, although I'm sure you've talked about it. I am wondering (if the tumor hasn't grown through the bowel wall) if I could even get away with just a transanal excision of the tumor instead of the major abdominal surgery for it.
When you mentioned having the same rectal pain, was it from a tumor? I'm even wondering if it could even be from severe internal hemmorhoids, but it sure feels like it where the tumor is. The tumor is only 3 cm up from the anal sphincter, so I can pretty much pinpoint when pain comes from that area. I'm afraid to go into ER. I don't have too much confidence in my local hospital- I've been there twice for blood pressure related issues and they never seemed to know what they're doing. When they heard my cancer history, I had to tell them all the drugs I've had, etc. and they didn't even seem like they had ever heard of them. The NCI hospital where this surgeon is and where I had my liver resection (UCSD/Moores in San Diego/La Jolla). My insurance won't even pay for me to go into ER there if I'm able to go locally. So, I feel like between a rock and a hard place. Hopefully, I can find out more on Monday when my onc is back in town and I can hopefully finally talk to the surgeon!0 -
I do know PhilPhillieG said:Hi Lisa
Congrats on the lower CEA, that's great news.
I do know that while narcotics can work for pain, they also slow down the bowels so that's not a good choice. I think you know what my choice medicinal "cure all" is.
MJ does help with pain relief too.
-phil
I do know that the MJ can help. We've discussed this awhile back. I actually hadn't even thought of it recently for this. I would do it, but my husband acts like I'd be committing the crime of the century to smoke mj. He's so paranoid that we'd get caught with it at our house, he'd lose his license to practice law, etc. This is all even with it being legal in California for medicinal purposes. They still do crack down- the place that sold it in my town before has been shut down and hasn't reopened (they were shut down due to being too close to a school- the crazy thing is that particular school has been nonoperational for quite some time- even so, it went to court and they lost- it still got shut down. My hubby is still being majorly overparanoid, but that's what I have to deal with. Here, I probably live in one of the marijuana capitals with it being rural here- it's everywhere, so I know I could get some, but I probably won't.
Thanks for the advice anyhow. :~
Lisa0 -
no call yetAncientTiger said:Surgeons are
notorious for being late... but then that's probably because it's very likely their operations run into overtime. OR they get called back on their way out the door for this emergency surgery or that emergency surgery. Freaked me out the last time I was in for surgery and my surgeon stopped in to check on me at 9 o'clock at night...made the comment that he had had a short break, had two more surgeries to go before he could go home, but wanted to stop in to see how I was doing. I was FLOORED.
Hope you got that callback Lisa, and hope you can get in quickly to get that taken care of. Wading through pain really sucks!
It's almost 8 pm and no call from the surgeon... grrr!
I know they're busy and the nurse told me she had a crazy schedule for surgery this week. But still, with my onc gone this week and she not calling me back, I feel like they're just leaving me out on my own with this. I DON'T want to go to ER- don't feel it's to that point, but mainly because I don't trust the surgeons at my local hospital. Last time I went to ER, the docs and nurses in there had never even heard of any of the chemos I've had. They don't know what they're doing with cancer. I'd only want to go down to UCSD/Moores where I had my liver surgery. With an HMO for insurance, I don't have that option- if I'm local, I have to first go to the local hospital in my network for ER.0 -
My primary tumorlisa42 said:Blake
Hmm... thanks for commenting. My oncologist has been out of town all week- due to be back Monday, so I haven't even been able to tell him about any of this. The nurses there know & they're the ones who put in the referral to the surgeon for me. It's now 7:15 p.m. & no call from her- can't imagine she's still going to call this late. So I'm disappointed in that. I'm thinking she'll probably want me to have a colonoscopy or a sigmoidoscopy, the kind with ultrasound. My original tumor went through the bowel wall & they could only tell that with the ultrasound, not the regular kind of colonoscopy/sigmoidoscopy.
Buck, when you had your surgery, did you have an ileostomy? What kind of surgery did you have? I don't remember, although I'm sure you've talked about it. I am wondering (if the tumor hasn't grown through the bowel wall) if I could even get away with just a transanal excision of the tumor instead of the major abdominal surgery for it.
When you mentioned having the same rectal pain, was it from a tumor? I'm even wondering if it could even be from severe internal hemmorhoids, but it sure feels like it where the tumor is. The tumor is only 3 cm up from the anal sphincter, so I can pretty much pinpoint when pain comes from that area. I'm afraid to go into ER. I don't have too much confidence in my local hospital- I've been there twice for blood pressure related issues and they never seemed to know what they're doing. When they heard my cancer history, I had to tell them all the drugs I've had, etc. and they didn't even seem like they had ever heard of them. The NCI hospital where this surgeon is and where I had my liver resection (UCSD/Moores in San Diego/La Jolla). My insurance won't even pay for me to go into ER there if I'm able to go locally. So, I feel like between a rock and a hard place. Hopefully, I can find out more on Monday when my onc is back in town and I can hopefully finally talk to the surgeon!
and it had become a bit nasty. I had a full APR, so a permanent colostomy (much better than an ileostomy).
Sorry to hear about the insurance stuff, and about your hubby's unjustified paranoia (they won't go after a single cancer patient staying within the law).0 -
Lisa
Lisa,
I am so glad to hear that your CEA is down.
I'm really sorry to hear that you are in pain. I understand how you feel about the ER. It is a pain when they don't know your situation.
I must say I'm with Phil on the mj. If you can get it I've heard it can really help.
Aloha,
Kathleen0 -
YAY LISA!!!lisa42 said:I do know Phil
I do know that the MJ can help. We've discussed this awhile back. I actually hadn't even thought of it recently for this. I would do it, but my husband acts like I'd be committing the crime of the century to smoke mj. He's so paranoid that we'd get caught with it at our house, he'd lose his license to practice law, etc. This is all even with it being legal in California for medicinal purposes. They still do crack down- the place that sold it in my town before has been shut down and hasn't reopened (they were shut down due to being too close to a school- the crazy thing is that particular school has been nonoperational for quite some time- even so, it went to court and they lost- it still got shut down. My hubby is still being majorly overparanoid, but that's what I have to deal with. Here, I probably live in one of the marijuana capitals with it being rural here- it's everywhere, so I know I could get some, but I probably won't.
Thanks for the advice anyhow. :~
Lisa
I am sooooo happy to hear that CEA is going down..... and it will continue to go down!!!! I hate hearing you are in all that pain. I sure hope your Doc comes thru for you..and fast!!
Jennie0 -
good for youKathleen808 said:Lisa
Lisa,
I am so glad to hear that your CEA is down.
I'm really sorry to hear that you are in pain. I understand how you feel about the ER. It is a pain when they don't know your situation.
I must say I'm with Phil on the mj. If you can get it I've heard it can really help.
Aloha,
Kathleen
lisa.keep those numbers going down.i dont have an answer for your pain.my onc told me the only thing for pain is prescription meds and thats what i take for abdominal pain from chemo....Godbless....johnnybegood0 -
Pain managementlisa42 said:I do know Phil
I do know that the MJ can help. We've discussed this awhile back. I actually hadn't even thought of it recently for this. I would do it, but my husband acts like I'd be committing the crime of the century to smoke mj. He's so paranoid that we'd get caught with it at our house, he'd lose his license to practice law, etc. This is all even with it being legal in California for medicinal purposes. They still do crack down- the place that sold it in my town before has been shut down and hasn't reopened (they were shut down due to being too close to a school- the crazy thing is that particular school has been nonoperational for quite some time- even so, it went to court and they lost- it still got shut down. My hubby is still being majorly overparanoid, but that's what I have to deal with. Here, I probably live in one of the marijuana capitals with it being rural here- it's everywhere, so I know I could get some, but I probably won't.
Thanks for the advice anyhow. :~
Lisa
Don't know if this helps or not Lisa, but several years ago I had problems with reoccurring oral abscesses...EXTREMELY painful. The only thing I could do was take 4, 200 mg ibuprofen (same dosage as a prescription from the oral surgeon), 2 extra strength tylenol, and 2 aspirin. Of course, I found out much later that I was lucky not to have had an aspirin overdose, as ibuprofen is an aspirin based medicine (YIKES!).
I didn't LIKE taking all those pills every 4 hours, but it sure helped take some of the edge off the throbbing pain in my head. Knowing what I know NOW, I probably would have forgone the 2 aspirin and just took the tylenol though. LOL0 -
Awesome
Great news on the count going down. You are going in the right direction and thats awesome. Sorry about the pain issue. Wish that you could have this dealt with as you have been dealing with this for some time. MJ always made me nervous and it is also legal in Michigan. I'd be paranoid of getting caught even though legal, but like you said they do crack down even when part of the law is behind it.
Kim0 -
Dear Lisa,I know you have
Dear Lisa,I know you have been hoping and waiting CEA goes down,finally it did.I am so glad to hear this news.Good job,keep going.Best wishes.0 -
Did you ever hearlisa42 said:Blake
Hmm... thanks for commenting. My oncologist has been out of town all week- due to be back Monday, so I haven't even been able to tell him about any of this. The nurses there know & they're the ones who put in the referral to the surgeon for me. It's now 7:15 p.m. & no call from her- can't imagine she's still going to call this late. So I'm disappointed in that. I'm thinking she'll probably want me to have a colonoscopy or a sigmoidoscopy, the kind with ultrasound. My original tumor went through the bowel wall & they could only tell that with the ultrasound, not the regular kind of colonoscopy/sigmoidoscopy.
Buck, when you had your surgery, did you have an ileostomy? What kind of surgery did you have? I don't remember, although I'm sure you've talked about it. I am wondering (if the tumor hasn't grown through the bowel wall) if I could even get away with just a transanal excision of the tumor instead of the major abdominal surgery for it.
When you mentioned having the same rectal pain, was it from a tumor? I'm even wondering if it could even be from severe internal hemmorhoids, but it sure feels like it where the tumor is. The tumor is only 3 cm up from the anal sphincter, so I can pretty much pinpoint when pain comes from that area. I'm afraid to go into ER. I don't have too much confidence in my local hospital- I've been there twice for blood pressure related issues and they never seemed to know what they're doing. When they heard my cancer history, I had to tell them all the drugs I've had, etc. and they didn't even seem like they had ever heard of them. The NCI hospital where this surgeon is and where I had my liver resection (UCSD/Moores in San Diego/La Jolla). My insurance won't even pay for me to go into ER there if I'm able to go locally. So, I feel like between a rock and a hard place. Hopefully, I can find out more on Monday when my onc is back in town and I can hopefully finally talk to the surgeon!
from the surgeon?0 -
NopeBuckwirth said:Did you ever hear
from the surgeon?
Blake, I have not heard from the surgeon at all. Very frustrating, as my interactions with her in the past have always been good & she had always been responsive in the past. I do have a name of another surgeon at the same place who has been hired fairly recently. Did surgery for a friend of mine w/ cc and she thinks he's wonderful. He came from Sloan Kettering in NYC. Maybe I'll give him a call Monday. We shall see. I imagine I need to get in and have a colonoscopy w/ ultrasound. I'll talk to my onc hopefully early Monday. Monday's also gonna be a busy day- my 15 yr old has all her homeschooling work due to her teacher Monday at 1:30 & then she has an orthodontist appt after that. I have to crack the whip over my daughter or as soon as I leave the room she stops working. Frustrating, so that's what I'll also be focusing on that day.
Thanks for asking- I'll update again after speaking to one or two of these doctors and when I know more-
Lisa0 -
Hi Lisa
I'm so happy to know that your CEA went back down, it's a good sign!!!! Yet, I'm also worried that you are in pain.
I went to NYC and visited my friend in the last few days, seeing her in pain broke my heart!
I really hope you will find a way to ease your pain and find a way to keep improving your health. Being positive and happy is very important.
Take good care and I will continue to pray for you.
Dora0 -
Hi Lisa
I'm so happy to know that your CEA went back down, it's a good sign!!!! Yet, I'm also worried that you are in pain.
I went to NYC and visited my friend in the last few days, seeing her in pain broke my heart!
I really hope you will find a way to ease your pain and find a way to keep improving your health. Being positive and happy is very important.
Take good care and I will continue to pray for you.
Dora0
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