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anal cancer
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I just read through this entire thread with Cinderthistle, Mak1970 kittpugh, sandlynn, tcvetnic and indianamatt. Everyones story is a little different but there are so many common threads, thank you to everyone for sharing. I am learning so much. I had the CAT scan yesterday and am so releived - 1. FDG uptake in the anal canal region (maximum SUV 5.51), possibly representing the known primary neoplasm. 2. No evidence of FDG-avid metastatic disease. I don’t know how lucky one can get. I feel blessed, but of course not looking forward to the treatment. I will get a port on March 13 and believe chemo will start on March 16. I will get 5-FU and mitomycin by a pump I’ll wear home for 4 days, then will have it again at toward the end of the treatment. I’ll have the radiation for 28 or 33 days. 5 days a week. I live alone and am trying to figure out if I am going to need help. The radiologist indicated at some point i would not be able to drive myself. Fortunately the cancer center is only 5 minutes away. I’ve compiled lists of questions and shopping lists from what you have all shared. I just read in one of the posts something that has me worried (one of a 100 things!), someone spoke about shaky hand. I’m an artist and hoped to be able to continue to paint when I felt like it through this ordeal. So a shaky hand is worrisome! On the other hand my work is pretty tight and a shaky hand might assist me in loosening up. …. Since they were able to move my PET scan up a month I was hoping everything would be moved up but it doesn’t appear so. One other thing I’m grateful for is the Cancer Center, Hospital, and my primary group are all on MYCHART so I can ask questions, have all my appts. and see test results all in one place. In case some of you didn’t hear the beginning of my story, I had my 5 year colonoscopy, they always seem to take off a polyp but I was dumbfounded when the dr said as I was waking up, you have cancer. Anal cancer. I had no symptoms, what if my next colonoscopy was not for 2 more years or 4 more years. … At any rate I’m forever grateful. Other than the port I don’t expect to have any news next week so you won’t hear from me again until I get the chemo. Again thanks to you all!
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Dear Janf: That's amazing that you managed to read through all of our threads! I know I can get a little verbose, so I hope you were able to skim through my duplications of what I said to Cinderthistle and now yourself. Your post will definitely teach me more than I know, as I have no idea what FDG uptake, maximum SUV 5.51 is. The only word I recognized was metastatic, the spreadability of cancer to other parts of the body, but thank God, in your case this hasn't happened. I love the fact that you are an artist! What a wonderful outlet for the emotions - when you feel up to expressing yourself - as the Spirit moves you as they say. My interests turn to learning to play a musical instrument, which saddly hasn't born fruit even after all these years. Lol. The best I can do is play my iPod. But I did curate a playlist that became music therapy throughout Treatment. And that was worth every minute spent doing that. Yes, Cinderthistle did touch on having "shaky hands" as a side effect of the Chemotherapy. She really suffered those side effects terribly and it seemed to be the thing which she couldn't get passed. But we respond as individuals to Treatment. I can't stress that enough. I also deeply feel that our journey through Treatment deserves outside helps from anyone willing to offer it, whether it is to make a meal, or drive us to the clinic, or clean the eaves as my sister did for me, or just sitting and watching TV with us while we drift off to sleep on the sofa. You mentioned having a pump for Chemo at the start and at the end of the 28-33 days of Radiation. I know that mak1970 knows about Chemotherapy pumps. I know more about the Radiation side of Treatment. To that end I'm here whenever you want to chat. God be with you Jan.
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FDG uptake refers to the absorption of a radioactive glucose analog by cells, highlighting areas of increased metabolic activity on a PET scan.
What FDG Uptake Means
FDG is a radioactive form of glucose used in PET imaging. Cells absorb FDG similarly to glucose, but once inside the FDG becomes metabolically trapped, allowing PET scanners to detect areas of high uptake as bright or “hot” spots. Increased FDG uptake indicated heightened cellular metabolism, which can occur in both normal and abnormal tissues. -
Hi Jan: Thank you for this definition/explanation. It helped me find more about it online. Gosh between the lot of us, we will become experts in the field, Lol! Silly me, I can't even remember getting the injection of the FDG before my PET Scan. I just remember being in the tube and controlling the urge to scratch an itch. When I told it where to go and what to do when it got there, Lol.
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Hi Kittpugh and all, I finished my 1st week of radiation and 1st round of chemo. All week I was really tired so took a long nap every day plus slept all night. The chemo came off on friday (i wore a pump home) the worse part was i am allergic it seems to the adhesive on the bandage they used to protect the port area so I ended up with blisters that itched really bad. The balls of my feet were also getting sore. Saturday I woke up feeling almost normal but by saturday night my tongue was getting sore. Today I was ok, did take a nap. But I’ve been able to paint some this week which I’m grateful for. Fortunately I’ve got all my commissions done for the moment so that takes the pressure off. I was disappointed with the sore tongue, I was hoping I could avoid that! All your and others advice on salves, food, and other ideas have come in so handy. The dr says quit reading! I’d rather have a clue what might happen so I’m not blindsided. Thank you so much for all your tips and the time it took to write it. Oh yes the crotch is starting to itch some!!
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Hello Again!! So glad to see a post from you! One week down! Yay!! Your need for sleep registered so instantly when I read it. I slept as you are, too. It shows how much the body is ready to fight to repair itself! That's a good sign I think. The feet and the sore mouth - not having a sore mouth until close to the end when I had to switch to an herbal non-floride tooth paste, that was my only experience. Feet? My feet always hurt so I didn't find that any more than the usual. I'd love to hear more about your painting and commissions!! Wow! That is so cool! Portraiture or Landscapes? Realism or abstracts? I had the biopsy sample taken in a sigmoidoscopy last Monday by a new doctor who I took an instant liking to just the way she was talking to other patients, leaning in to listen to them and offering many comments. The only word she wrote on my paper upon discharge was "Inflammation" and I thought, that's not too scary a word. I'll have a phone consultation with her April 14. A couple of weeks ago I did notice my stool was blacker than the ace of spades, but I was drinking tomato juice heavily. When I stopped that, the color of stool returned to normal. But then a few times I saw small globs of blood. They went away also. I don't know what that is indicating. Please dear God, no more radiation. My body is just healing up from last year's treatment. Back to your painting. Do you chose bright primary colours or more of a Dutch Master's palette? So theraputic! God be with you Jan.
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this is my website. I am a realist, mostly landscape and architecture. Www.janetfrancoeurfineart.com I owned a gallery also for 25 years and sold it after my husband died in 2016. Fortunately they still sell my work. I always ran the business but he did everything else, cooking, shopping, etc. I wonder if that hasn’t contributed to my cancer, my diet has not been wonderful since he died, also I worked in the printing industry when I was younger and was around a lot of chemicals. And I started painting in oils a few years ago with bad stuff live solvent, cobalt and cadmiums. I am praying for you that your test comes back negative for cancer!!
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Dear Jan: Just had a quick look and Love what I'm seeing. I'll go back in when I have more time. But there's one that comes up when I click on New Bern City Hall, but it's a farm field up to a light house so could be a Maritime farm?? Love that one. Gosh!! Will go back in when I can and bask in the paintwork of these portraits.
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Thank you for sharing your update. It is clear how much you have learned and how thoughtfully you’re approaching everything. Your scan results are truly encouraging, and it makes sense to feel both relieved and nervous about what’s ahead. Being so well prepared, close to the cancer center, and able to manage everything through MyChart are real positives. Your creativity and perspective really shine through, even in your worries, and that resilience will carry you far. Wishing you strength and calm as treatment begins as you are not alone. 💙
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My feet quit hurting today, 7 days since chemo stopped, hurray! Now if I could get rid of this sore on my tongue that is making it really uncomfortable to eat. All around the edge of my tongue is sore, most of it is not debilitating but this one particular spot is. Even magic water (benadryl - lidocaine - maloox) does not touch it even though it numbs everything else. Yesterday I took 2 tylenol, swished l-glutamine, sucked on ice cubes, and topped it off with a shot of Nowadays 10mg thc drink and it finally eased off enough that it just took the edge off the pain enough that it was not debilitating. Of course I slept the afternoon away! By 11 pm all that wore off so I did it again and slept all night 8 hours without even getting up to go to the bathroom. I have to remember for my next round of chemo to chew ice while getting the mitomycin, then continue to drink ice water for the duration of the treatment (tend to like room temp so have to remind myself) and take l-glutamine which i forgot to do the first time around :(.
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Dear Jan: Yes, it's odd, but that seems to be the way to open the Tile of Pemagquid Point, Maine, by clicking on New Bern City Hall. But today when I checked, I couldn't find it at all. Mind you, it is a Tile so that might be found in another spot. At any rate, I had a good long look at all your artwork and I really like them!! So they must continue! Get over this hump in the road of anal cancer and press on to new horizons and new perspectives! God be with you Jan!
Dear Jan: I wrote the above paragraph some days ago, but it looks like I didn't POST it, so you might not have seen it. Anyway, I wanted to comment on your latest post about your tongue problem. First of all, please describe to me "layman's terms, Lol" how the Chemo Treatments are set up. You have the pump, right? And you wear it for so many days, and then you don't wear it at all? I'm just not clear on the structure of your Treatments. My calendar says that you will be seeing your Oncologist tomorrow - is that for Radiation Treatments? Or did tomorrow's date get moved up? Again, I'm confused. That is really interesting that the only relief for that single spot on your tongue is ice! I say that because, that is the method by which people have a hope of saving their hair is with an ice cap. I'll tell you a little story. My sister (she lives in the U.S.) had a friend who was undergoing Chemotherapy for breast cancer, where she would be seated in a chair in the "Chemo Suite" of the clinic for approx. an hour and have an intravenous of the Chemo. She didn't want to lose her hair and did some online searches and found that Sweden offered a sort of bathing cap for the purpose of saving one's hair. My sister and friend would take an ice cooler into the clinic and every half hour, my sister would grab a well iced cap from the cooler and switch out the melted ice cap for a fresh one. This went on for weeks. And it worked! The hair didn't fall out! So if ice is the answer for the head, it must be the answer for the tongue? (I wondered if Oral Gel would help??) This idea has caught on. Even my clinic had a booth for "ice caps" for people willing to afford the cost of the hair-saving method. I'm glad that you were able to get some sleep. There's an ad on TV, I don't know if you get the same ads in the States, and it says "Stop the Sleep Shaming" As cancer survivor, I agree, we must not feel ashamed at the amount of sleep our bodies need to repair themselves! Thank God our bodies CAN repair themselves. "We are fearfully and wonderfully made!" God be with you Jan!
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Dear Kittpugh - I have stage 2 anal cancer with a 1” tumor, it has not spread but the radiation is also targeting adjacent lymph nodes. My chemo is mitomycin which is administered while sitting in the clinic on Monday March 16, then they hooked up the machine I wore home filled with 5 FU which runs 24 hrs/day and came off Friday morning March 20. This happened on day 1 of radiation and came off on day 5 of radiation. This will repeat on day 21 of radiation, April 13 and come off on April 17. I get 28 radiation treatments altogether. All treatment is over on April 22. So I will probably have the side effects from chemo for a week or two after finishing radiation but at least that one part will be finished. I will have to say I only had nausea a couple times during chemo at first twinge I took a pill and it stopped so i never vomited. I know I won’t be in as good of a situation for the next round of chemo but i think i know how to deal better with it next time. All in all, 2 weeks in, it could be worse (probably will be but at least for now…..) The **** burn and 1000 paper cut feeling I’m not looking foward to but so far the worst part has been that 1 small spot on my sore tongue, and fortunately that has only gone on for 3 days now and this morning it is ever so slightly better. The rest of the sores have not been debilitating, just this one spot. But next chemo I will use the L-glutamine days leading up to it and chew ice during administration of the mitomycin and as much as I can during the next 4 days. I think you said you had no side effects the 1st round but did the second. As they say everyone is different! As far as my website I could not seem to correct that file with both the tile and the lighthouse painting so i just deleted it. I have reinstated the lighthouse painting but have not gotten around to fixing the. Tile. We have had a very cold winter here in eastern North Carolina but I think starting this weekend it will finally warm up for good. Since I had to cancel my trips to California and France I decided to concentrate on my garden. I keep trying different plants, some of my beds i’ve got how I like them and others I’m still working on. I bought this 100 year old house in January 2021, added an enclosed breezeway and a garage. On one side it has created a wonderful small courtyard, the other an intimate garden just outside the sliding doors. I love my yard, it is on a double lot, the neighbors left and right are as well, I’m on a corner and across the street is a small park so no one very close. I always say I have a garden but I’m not a gardener. I put plants in and leave them, if they make it they make it if they don’t they don’t. My yard guy mows, weeks, acts as my handyman, and watches my house while I’m gone. I don’t know what I would do without him. so far I’ve had him plant 5 new hydrangeas, move some stuff, and I’ve ordered catmint, 9 plants to be put in in a wave pattern, and some other stuff. New ceramic pots for the front replacing fiberglass ones that got a big chunk blown out of it in the cold freeze this winter. This is a long way from anal cancer. I am working on a blog post about my garden. If you are interested in being notified when I post you can sign up on my website, i think you do it at the bottom of a post. It is good to be distracted!!!
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Dear Jan: Thank you for taking the time to spell it all out for me! Lol. With the help of my trusty calendar, everything looks right and I'm not confused anymore. My injections (at the start and at the end of Radiation (also 28, Mondays to Fridays,) was also Mitomycin. While you carried a pump for the in between sitting sessions, I took tablets - 5 a day on each day that I had Radiation. I only had 2 episodes of nausea and one of them I felt was my own fault for leaving myself so dehydrated. But apart from those episodes which didn't erupt into vomit, I literally sailed through Chemo Treatment. Was it the Ginger cubes? Was it the anti-nausea wristbands? Who knows. We are all different. Radiation on the other hand was my nemesis, but not at first. One doctor quipped that it took more time to find a parking spot at the clinic than it took to lie still on the Radiation table. So true. Lol. Again, we are all different and you might not experience the 100 paper cuts sensation!! I think being extra sensitive down there to begin with because of that nasty open anal Fissure for 9 months leading up to the discovery that cancer was the reason it couldn't heal!! (which by the time Radiation was done, had healed up completely and the hemorrhoids were gone - which was a good thing, because my Radiation Oncologist told me from the outset that she wasn't going to do anything to heal them. Glad that they just healed by themselves by disappearing. I think that as long as I avoid constipation, I won't have hemorrhoids. They are not something that I am prone to. It was a first! Hoping the last. On a brighter topic - I think we might be two peas in a pod with your choice of houses, gardens, and need for space! Your writing about that, I feel, mirrors your artwork in the lovely structures, lots of greenery, the spaciousness of the settings for your architecture, yah I can really feel it! I have a house that was an original farm house, probably built around 1895, in fact I should include a photo. In 2004 the owners tore off the back kitchen, excavated for a new deep basement foundation, gutted everything down to the studs and replaced with up-to-date wiring, plumbing, drywall, an addition of a sunroom and perimeter landscaped garden beds. I replaced shingles for a metal roof over the house, car port and gazebo after moving in 2008. My Realtor turned to me and asked "Are you a gardener?" I confessed that I wasn't but I could learn. Lol. But I do love puttering around outdoors far more than I enjoy dusting and vacuuming indoors! - Yes! FAR MORE! Lol. Here's a Toast to Distractions!! Lol. God Be with You!
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Beautiful house! Today is 1/2 way through my treatment. Mouth sores finally healed. Next round of chemo is April 13. Wear pump home for 4 days. This time I will be better prepared and now i know the. Value of L-glutamine and eating ice as much as possible during those 4 days. I only had a twinge of nausea and took a pill immediately so no vomiting. Grateful for that. This week my vagina and anus are starting to burn a little but its tolerable. I have lots of stuff to put on the area thanks to suggestions from everyone here. Other than that I feel surprisingly good. They said my blood count was 58 and if it gets below 30 they will cease treatment until it goes back up. How will I know? when will they take another blood test? Maybe tues when i see the radiation dr. I feel good so its kind of counter intuitive. I don’t really have diarrhea but very loose stools. that is from the low residue diet I am on. I have never heard about that diet, it’s basically low fiber. So easy to digest. I have all kinds of sprays, wipes, salves, thanks to everyones suggestions so feel I’m prepared for what is to come. Just keeping my fingers crossed that the treatment works. I have a lot to do before I die!
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Dear Jan: Yes, you are half way through and that thought ran through my mind again and again, and if I hadn't gotten a posting today from you, I wanted to send you one just because you have made it half way through and I hoped that you were hanging in there. Sounds like you are doing just that! You must have a soldier's determination and that's a great thing to have on this journey. I took out my appointment cards - we were asked to sign in each time - and I see that my blood work was scheduled on the 10th and 26th day of Radition. My clinic had 3 Radiation tables. Sometimes a machine would go on the fritz and maintenance was called in, meaning that those patients to that table were added to one of the other tables. Delays were anticipated, but with each treatment lasting no more than 10-15 minutes, it wasn't a hardship - except when you had a really full bladder and couldn't hold out! Lol. I really valued the fact that at my clinic everything was close by - the labs for blood work, a pharmacy for stuff, the Chemo Suite (two rooms containing about 10 - 15 chairs each for injections) - the 3 Radiation tables and some small exam rooms for the scheduled doctor's check-up. Lighting and decor wasn't antisepticly white with florescent bulbs. It was soft, dimmed, lots of warm wood accents! And the technicians and reception clerks made you feel that they cared. I really lucked out! Has your Radiation Oncologist mentioned the cream "Flamazine"? My doctor told me about it, but would only write a prescription for it near the end time. Maybe because a tube of cream had a 7 day expiration (don't ask me how a cream can only be effective for 7 days?) And maybe it was expensive - though I didn't have to pay to get it. And really, the "burn" didn't show up until day 18 when I had one pea-size red spot, then bit by bit more in the next 10 days until I was all done & dusted with Radiation Treatment. You just stay well-creamed up! It's do-able. It's tolerable. You know you don't wish it on anyone else and you sure don't want to go through it a second time, but you survive it, you live to tell it. And I like what you said "we've got a lot more living left to do!" More scenes to paint ( for you), more tunes to strum (for me on my ukulele). So a Toast to you at Half Way Through! God be with you Jan. HAPPY EASTER!
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Another week down - 9 days of radiation left, 4 days of chemo. All in all I have tolerated my treatment pretty well. The worse part, as I said last week, was the mouth sore, I had sores all around the edge of my tongue, not comfortable but tolerable, all except the one spot! That finally resolved, the magic mouthwash did not touch it, what helped was washing my mouth with l-glutamine and taking 3 motrin every 6 hours. So not looking forward to chemo next week but I will keep ice in my mouth as much as I can and do the l-glutamine, I’ll let you know if it helps. I think the most disappointing part is I don’t feel like doing my artwork. I sleep a lot. But I HAVE been sticking a few plants in the ground, it’s still early spring here in Eastern North Carolina so things are really just getting started. I guess the other part that is disappointing is that we won’t even know for several months if the treatment even worked. I’m convinced it is working and I’m planning my trip to France in the fall, replacing the one I had to cancel this spring. At 75 I don’t know how long I’ll be confident to continue to travel overseas by myself so don’t want to waste a chance to go. Back to anal cancer! My bottom is burning but tolerable and I continue to have a little diarrhea, but I’d rather have that than be clogged up. I have never heard of a low residue diet but that is what I am on. No onions, peel potatoes, nothing with seeds, no oatmeal, etc. I’ll share it here. The goal is eat what is easy to digest. I normally eat irregularly but do get hungry. I’m not hungry now so that is a new twist. Losing some weight but I was at a all time high when I started this treatment so losing 10 pounds will get me back to normal. As I said before I am very lucky that my cancer was caught early, no spreading, the dr said “we rarely catch it this early”. But the bad is it is Non hpv squamous which is harder to treat than the HPV type. In fact one place on a cancer site says it is not curable. I hope that is not true because I have a lot of things to do yet in my life.
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