anal cancer

janf

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!

kittpugh

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.

janf

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.

kittpugh

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.

janf

https://csn.cancer.org/discussion/comment/1726432#Comment_1726432

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!!

kittpugh

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.

janf

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!!

kittpugh

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.

kittpugh

janf

Hmmm I will have to check it out that is weird, Ill correct it. this is a fairly new website replacing one i had for a long time and still working kinks out. The lighthouse painting is Pemaquid Point in Maine, my favorite lighthouse ever.

subham25

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. 💙

janf

thank you subham25! I will post every week and hope it helps someone. I may have mentioned this before but one doctor said “quit reading”, I am GLAD to read everyones story so i can be aware of what COULD happen. I don’t like to be blindsided. I hope you are doing ok subham25!!

janf

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 :(.

kittpugh

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!

janf

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!!!