CT done today
Comments
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Well said, No TimeNoTimeForCancer said:pinky, you are amazing.
pinky, you are amazing.
Years ago when I was a flight attendant we always had to ask people in the emergency exit row (they still do) if they are able and willing to assist in the event of an emergency. I had an elderly lady right next to the door and I added that the door weighed about 30 lbs. Not only did she show me how to operate the door she told me she was a farmer. Everyone was good with that woman in her seat!
I would let you sit in my emergency exit row seat.
Pinky, I agree with her.
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Well said, No TimeNoTimeForCancer said:pinky, you are amazing.
pinky, you are amazing.
Years ago when I was a flight attendant we always had to ask people in the emergency exit row (they still do) if they are able and willing to assist in the event of an emergency. I had an elderly lady right next to the door and I added that the door weighed about 30 lbs. Not only did she show me how to operate the door she told me she was a farmer. Everyone was good with that woman in her seat!
I would let you sit in my emergency exit row seat.
Pinky, I agree with her.
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How great that things gotpinky104 said:To Wannabeatit
I had horrible hip pain in November and December. I had seen my orthopedist months ago and he told me, without an X-ray, that I had greater trochanteric bursitis. Since I have an allergy to steroids, I couldn't have an injection done. He told me all I could do was to put ice on it, which may help at times, but you can't keep ice on it while you're walking around. The pain bothers me a lot when I go to bed. I'm now taking two extra strength Tylenols and two Gabapentins every night when I climb into bed. I also sometimes use over-the-counter Lidocaine cream, which helps a lot even thought the pain is supposed to be coming from further in. I'm now wondering if I have bursitis at all, or if this is just from the muscle cancer.
Yesterday, I googled "cancer of the psoas muscle" to see what I could find. It brought up a Japanese medical paper from 2018 (which I also found later on several different websites including the National Institute of Health's). The paper is called "Malignant psoas syndrome associated with gynecological malignancy: Three case reports and a review of the literature." If it's not what I have, it sounds a lot like it. It's a bit scary with two out of the three women who were studied dying within 7 or 8 mos. from the first onset of symptoms. I've already had the symptoms much longer than that. One of the women who died had UPSC, but I think she was the one who refused chemo. The one who lived had treatment with a chemo called TC and was taking Avastin. Avastin is one of the things I may get. You may want to read this paper as they mention severe hip pain. They say this syndrome is more common in gynecologic cancers than in other cancers, although it's extremely rare (but possibly very underdiagnosed, too).
My Cancer Center called me with a cancellation of an appointment for the radiologic oncologist that they wanted to offer me, and I took it. It's a whole week earlier. They moved my oncologist appointment to later in the day so that I could see one guy right after the other. I also finally got the call for my GI consult, which will be Wed. at 1 pm. The gastroenterologist who diagnosed my cancer the last time is out of town, so he asked another guy to take his place. The other guy is pretty good looking from the picture on their website. I'm glad I'll be getting it over with, but I'll have two bad days in a row. My PET scan, which is a full body one for the first time, is at 2 pm on Tuesday. I'm allowed to eat up until 8 am but then can have only water until the procedure. However, the colonoscopy requires a liquid diet the whole day before, so I won't be able to eat a regular breakfast before my PET scan. I'll only be allowed clear liquids. I'll just barely get home in time from the PET scan to start the bowel prep for the colonoscopy, and then I'll spend the whole night running to the bathroom. I won't be able to eat until after the Wed. afternoon colonoscopy, so I'll be without "real" food for the better part of two days. My husband is afraid I might pass out. I've been feeling worse than ever before with my previous cancers. Some days, I get a little bit of a sensation like I might pass out. I went to the patient portal and printed out my lab results, which probably weren't in the system yet on Thurs. when my oncologist saw me. There were a lot of lab results that were off, some high, and some low. I was surprised that my hemoglobin went up from 11.5 in Jan. to 11.8, but my red blood cells were very low. If I have to have surgery, I wouldn't be surprised to need a transfusion first or at least during the procedure. I've already had multiple transfusions previously. They may not want to do it because of my high ferritin level, though.
I got a call from the PET scan imaging center telling me that Medicare will require me to sign something acknowledging I've seen the cost of the PET scan I'll be having. It's a form that has to be signed by anyone having at least 4 PET scans. They said I wouldn't have to pay anything, just sign the paper. I'm glad they forewarned me. They said that the price is extremely high, so I shouldn't be shocked. Does Medicare actually think I want to be going through this expensive testing on a whim? I'd really prefer not to be needing it!
How great that things got moved up! I hear you on the colonoscopy, I just had one on Thursday, and the prep is so foul.
Just FYI, if that paper called the chemo "TC", I'm pretty sure that means taxol and carboplatin.
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LOL great story.NoTimeForCancer said:pinky, you are amazing.
pinky, you are amazing.
Years ago when I was a flight attendant we always had to ask people in the emergency exit row (they still do) if they are able and willing to assist in the event of an emergency. I had an elderly lady right next to the door and I added that the door weighed about 30 lbs. Not only did she show me how to operate the door she told me she was a farmer. Everyone was good with that woman in her seat!
I would let you sit in my emergency exit row seat.
LOL great story!
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Thank you for this list! IMAbound said:Did as Tamlen Suggested
This is a link that might be useful to anybody who might have to look into this. It covers the whole country:
https://www.accrf.org/wp-content/uploads/accrf_sbrt_facilities_sept09.pdf
Thank you for this list! I see Tampa here in Florida has it as does Green Bay, Wisconsin. This is good to know if I have a recurrence. In my mind, I think "when I have a recurrence" but I try not to think like that. Pinky had a long, long time of NED before her recurrence.
Love,
Eldri
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To LisaPizzaLisaPizza said:How great that things got
How great that things got moved up! I hear you on the colonoscopy, I just had one on Thursday, and the prep is so foul.
Just FYI, if that paper called the chemo "TC", I'm pretty sure that means taxol and carboplatin.
Why didn't I think of that? I was hoping for some other chemo that would do wonders for me. Thanks for telling me. Sorry to be replying so late.
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NoTimeForCancerNoTimeForCancer said:pinky, you are amazing.
pinky, you are amazing.
Years ago when I was a flight attendant we always had to ask people in the emergency exit row (they still do) if they are able and willing to assist in the event of an emergency. I had an elderly lady right next to the door and I added that the door weighed about 30 lbs. Not only did she show me how to operate the door she told me she was a farmer. Everyone was good with that woman in her seat!
I would let you sit in my emergency exit row seat.
Your comment is really coincidental (and nice) . My husband and I were in a bar once where a guy told us that he was looking for a farm woman. He said he wanted one for a wife because they do everything. As a kid, I grew up on a farm and had lots of chores. My husband still comments occasionally about how tough I am, keeping up with him on chores around here. Up until last year, we still shoveled the roof together in the winter. I went out there at 1 a.m. once when the roof was leaking onto my husband's computer desk. He was very sick and couldn't do it. I shoveled the almost two feet of snow next to the house by the light of the pole lamp at the end of the sidewalk, hoping not to fall off. We've decided that now, at 70 and 74, it's time to hire someone to do it. The last big snowstorm cost us $400.
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It only gets worse!pinky104 said:NoTimeForCancer
Your comment is really coincidental (and nice) . My husband and I were in a bar once where a guy told us that he was looking for a farm woman. He said he wanted one for a wife because they do everything. As a kid, I grew up on a farm and had lots of chores. My husband still comments occasionally about how tough I am, keeping up with him on chores around here. Up until last year, we still shoveled the roof together in the winter. I went out there at 1 a.m. once when the roof was leaking onto my husband's computer desk. He was very sick and couldn't do it. I shoveled the almost two feet of snow next to the house by the light of the pole lamp at the end of the sidewalk, hoping not to fall off. We've decided that now, at 70 and 74, it's time to hire someone to do it. The last big snowstorm cost us $400.
I had my colonoscopy today. The doctor found two ulcerations in the transverse colon. He said they definitely weren't polyps, and he didn't know what they were. He'd never seen anything like them. He's sending specimens out for a biopsy. The pictures he showed me make them look like big canker sores with white in the center. His comment on the report was that he's "concerned they represent metastatic lesions in a patient with known advanced stage endometrial cancer." I won't get the results for at least a week, maybe two, the nurse said. I hope they get them done a.s.a,p. after the rush my oncologist put on getting me scheduled for this procedure.
The ulcerations are right around the corner from where my intestines were put back together during my last cancer surgery. My cancer was wrapped around the ascending colon back then.
Sounds like my odds are pretty good for ending up with another awful cancer surgery! Time will tell....
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So sorry to hear this, Pinky
Just know we are here to listen and support you through this.
xxoo Denise
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I wonder the ulcers could bepinky104 said:It only gets worse!
I had my colonoscopy today. The doctor found two ulcerations in the transverse colon. He said they definitely weren't polyps, and he didn't know what they were. He'd never seen anything like them. He's sending specimens out for a biopsy. The pictures he showed me make them look like big canker sores with white in the center. His comment on the report was that he's "concerned they represent metastatic lesions in a patient with known advanced stage endometrial cancer." I won't get the results for at least a week, maybe two, the nurse said. I hope they get them done a.s.a,p. after the rush my oncologist put on getting me scheduled for this procedure.
The ulcerations are right around the corner from where my intestines were put back together during my last cancer surgery. My cancer was wrapped around the ascending colon back then.
Sounds like my odds are pretty good for ending up with another awful cancer surgery! Time will tell....
I wonder the ulcers could be caused by your prior surgery?
Although they haven't sent it to me yet, and it isn't on my patient portal, I electronically requested my colonoscopy record and the timestamp showed it was reported out the day after the colonoscopy. I don't know if you can request records electronically or pick up a copy so you don't have to wait.
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You are going through so much
You are going through so much! Will be thinking of you through these next weeks.
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To LisaPizzaLisaPizza said:I wonder the ulcers could be
I wonder the ulcers could be caused by your prior surgery?
Although they haven't sent it to me yet, and it isn't on my patient portal, I electronically requested my colonoscopy record and the timestamp showed it was reported out the day after the colonoscopy. I don't know if you can request records electronically or pick up a copy so you don't have to wait.
My GI doctor gave me the report immediately when I was still in bed there. It came complete with pictures. I'll write more below from what happened today at my appointments.
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Thanks for the update, Pinky.pinky104 said:To LisaPizza
My GI doctor gave me the report immediately when I was still in bed there. It came complete with pictures. I'll write more below from what happened today at my appointments.
Thanks for the update, Pinky. Will look forward to hearing details when you're ready to post. Hugs, B
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Today's Oncology Appointments
I saw the female PA at my oncologist's office today. I love her bedside manner. She hadn't gotten my colonoscopy report yet, so I showed her mine. She looked at it and said she didn't know what the ulcerations were. My husband asked if I could have ulcerative colitis. She said that ulcerative colitis doesn't look anything like this, so she didn't think so. She showed me the slices of the PET scan, going from the head down through the body. She said the good thing was that there was no cancer anywhere else in the body except for in that general area. The mass takes up about all the empty space on the right side of my abdomen. There's a little knob at the top of the mass that extends over toward the middle of the abdomen, and she's not sure if this could be cancer or not. It's where the colonoscopy report shows the ulcerations.
I showed her the case studies on Malignant Psoas Syndrome that I found on the Internet recently. It was done on 3 gynecological cancer cases in Japan in 2018. She thought I certainly had some of the aspects of that. When I later saw the radiation oncologist, he said I absolutely have that. I discussed the results with the PA, mentioning that two of the subjects died in 7 or 8 months, and one lived. The one who had serous carcinoma had been one of the deaths, but that woman had refused chemo. The one who lived had been the one who had taken TC chemo and Avastin. I asked her if TC was Taxol and Carboplatin, but she thought not. She said it was most likely Taxotere Cytoxin. I know I don't want that because of the permanent hair loss it can cause.
I showed her the article on Herceptin, but she researched my HER 2 status, looking at my Foundation One report, and said it wouldn't work on me. She said the biopsy report on the intestinal ulcerations is sent out somewhere else besides my hospital, so she can't pull strings so easily to get the report finished faster. She wants me to come back in two weeks after my biopsy report is (hopefully) there, then either do chemo with Cisplatin, Gemzar, and Avastin if I have cancer in the colon, followed by radiation, or radiation first if I don't. She didn't think I should have surgery on the intestine with having the ulcerations in multiple spots if they are malignant. I pointed out that there were only two spots, but that didn't seem to make a difference. She then sent me to see the radiation oncologist, saying that my two week appointment is tentative and that the radiation oncologist might have another take on my treatment, which he did. He hadn't seen either my PET scan report from two days ago or my colonoscopy report from yesterday. He also said he didn't know what the ulcerations in the transverse colon were. He raised the possibility that they could be another cancer, like colon cancer. He asked me how long I'd had my symptoms. I explained what I'd been through with my orthopedist, who'd said I had greater trochanteric bursitis. He flat out said that was ****. Then I told him how my leg is very numb, and my neurologist had said I had meralgia paresthetica from either wearing my pants too tight or from fat pressing on the nerve going over my pelvis when I saw him this fall. My husband then said he thought that was double ****, and the radiation oncologist said it was triple ****, or maybe even quadruple ****. That about sums up how I'd felt all along. He thought all my symptoms were being caused by the cancer. He said I'd suffered long enough with this. He also thought that the colon isn't resectable. He's having me come in tomorrow to start radiation planning. He's going to be discussing his plans with my oncologist's PA, the oncologist himself, and probably also my GYN/onc. He wants to start radiation as early as this coming Monday. He discussed two options, depending upon what the others say. He'd like to do 10 treatments with high dose radiation, then have me go for chemo. However, he might have me do low dose radiation for much longer and have me do chemo. The two might overlap some of the time. He said the side effects are mainly diarrhea, nausea, an increased risk of adhesions, and fatigue. There's also a small chance of a bowel obstruction. I know one of my sister's friends recently had two of those with her radiation. I discussed radiation cystitis with him because I get recurrent UTI's. He thinks he can aim the beam so it doesn't hit my bladder. I also think he's going to avoid radiating the intestine where the ulcerations are, having that treated by chemo instead, if it is, in fact, cancerous there. I'm glad this guy is getting the ball rolling because I've wondered how much longer I'm going to live with this. He said the earlier we get things going, the better the chance that the nerves will come back. Personally, I have my doubts that they'll ever recover. I've had this way too long, since before my last recurrence. When I didn't improve after surgery, I thought my nerves had probably been cut in surgery. I should have realized that since my CA-125 never went down as low as it had in 2010, that meant that the cancer was still lurking in there. The figure in 2017 after my recurrence surgery and up to this year was double what it had been after surgery in 2010.
I hope everyone gets together and agrees on radiation first, then chemo. I will be very upset if I have to go through another surgery. Thankfully, it seems like the odds are good for skipping that, after talking to these two. I already have chemo induced anemia, so I'm sure that will only get worse with more chemo, but I still think I'd rather have chemo than surgery. I hope I don't have a lot of radiation complications like many of you have had. Wish me luck!
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Pinky, Thanks for the update.
Pinky, Thanks for the update. I'm so glad you are finally getting some answers and will have a plan in place very soon. Having a plan to march forward with seems to help us more than most people could ever understand. It sounds like you have a great team looking out for you now. Please let us know how things go.
Love and Hugs,
Cindi
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Pinky
You are your own best advocate. Thank you for sharing your struggles, I know it must be very difficult but cathartic to put it all down in writing, but sometimes it helps to just get it out. Please keep us informed as you can.
xxoo
Denise
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Oh, boy.
Jairoldi hit the nail on the head. Your journey has been such a complicated one that I think I've given up on trying to keep it all straight despite your thorough sharing. I sure hope the plan that is forming is just what you need to get the relief you need, but I'll be honest and state the obvious...it doesn't sound like it's going to be easy.
You don't mention constipation, but that's what I had during both chemo and radiation. It felt like I had a lot of swelling and inflammation that made it hard to go, so Miralax was my lifeline during and after treatment. Diarrhea is no fun, either; I've been dealing with it for 6 months as a late occuring side effect of the radiation I had and I'll tell you if they recommend eating low fat and low fiber, take them seriously. Soluble fiber, like what's in Benefiber, helps diarrhea by absorbing water and insoluble fiber in high fiber foods helps constipation by creating bulk, but makes diarrhea worse. Foods that are a good source of pectin also help diarrhea. Think the Brat diet. Applesauce and bananas are among the good sources of pectin. If all that fails, there's still Immodium and Depends, but I consider those last resorts as Immodium makes me nauseous and Depends well.....no, just, no.
There's not much you can do about the fatigue except give yourself permission to rest, rest, rest.
I know it's not your first trip to the rodeo, darn it, but with all that's being thrown at you fast and furious now, I figure it wouldn't hurt to bring up about the little stuff that can help you to get through what you are facing. I'm keeping you in my prayers, too. Whatever works. I just keep wishing I had a magic wand, but life just isn't that easy, eh?
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Ugh, I'm sorry. But it sounds
Ugh, I'm sorry. But it sounds like you have some great doctors and a good plan to get going. Re the radiation -so far, I haven't had any issues from radiation, which I completed in May. I had diarrhea throughout, and one uti. Once I got over both, I've been fine.
Hope your cancer gets knocked out good this time.
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Good Luck and Smooth Sailing!
Hi Pinky, I hope that however your treatment plan ultimately plays out that you sail through treatment with no or minimal side effects. I will keep my fingers crossed that the colon biopsies turns out to be benign. I found this journal abstract on "multiple colon ulcers." https://www.ncbi.nlm.nih.gov/pubmed/26278290. In this particular case the ulcers were caused by NSAIDs. I hope that it turns out that your colon ulcers also have a benign etiology.
Good luck and good health to you!
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