Anal cancer

Thank you. I have to tell my son and his wife today. I’m almost a scared about that as I am about the cancer and what is to come. I will be seeing my surgeon on the second of January after my CT scan, then the radiologist on the seventh , followed by the Oncologist on the eighth. Welcome 2025. Should have known something was up when the first letters of the days of the year were WTF 😬. Sorry got to laugh or I will cry and you never let them see you cry.

it is a frightening journey and every journey different and I can’t tell you what to expect only you know you

I am pessimistic inside but try to optimistic on the outside so I smile at my nurses and make them smile sometimes

And yes I was afraid so to try to lessen that fear I took control so find your strongest attribute and make it work for you

These are a few of the things that may lessen the fear and help you on your healing path

Take notes on doctor visits or bring friend who does

Remember it is your body and if you have insurance you are the customer and you can take your business elsewhere if you are unhappy with dr/admin

Listen to the nurses and ask them questions One of my nurses saved me from the burning painful shot and the nasty mediport insertion I had to get every two weeks by getting my doctor to prescribe Lidocaine cream- trust me they know a lot of tricks

I bribe them with chocolate it works wonders

Support Team gather them hold them close and when they ask what can I do tell them what you need

I’m waiting for one of mine right now ready to hand her the mop and bucket

If you are a believer in any god turn to him/her they have not abandoned you They have sent you drs they have given us the drugs that can heal and they have given us the friends and family that will hold us on good days and bad

Fear

by

Kahlil Gibran

I was just diagnosed today, not sure what stage I am in yet, but wanted to get more info about RSO. Can you tell me a little bit about how i would start using it? I called the local dispensary and they said they have something called FECO. Are you familiar with this? Thank you!

Yes, I had chemo thru my port and at home for a total of 8 days. No ice packs are needed. Just ask your dr to prescribe lidocaine. Put, lidocaine on your skin before you get poked and cover with plastic wrap to keep your clothes clean. The nurses will clean it off before getting poked and you shouldn’t feel it while using lidocaine. I only remember getting one dose of meds at the hospital, but that was also hooking me up to the pump. Getting hooked up to the pump wasn’t to bad. You might have to cover it up with a pillow to get sleep. It has an annoying buzz. I placed mine in an old school lunch kit to soften the buzzing sound while sleeping. Hope this helps.

Thank you for responding. I'm sorry, I was responding to another member's post that mentioned they used ice pack inserts on their hands and feet during chemo. I'm assuming they also had treatment at home. Not sure how ice packs would stay could if you were getting treatment elsewhere. I appreciate your info. The more I can learn ahead of time, the better I will be prepared for what stage I'm at and what my treatment will be. Thank you so much!

I saw that. So I'm assuming you were taking your chemo at home and were able to rotate to keep it cold?

Did you see my question about the RSO? When I talked to my dispensary about it they said they have FECO. Is that similar?

New to this site….but here’s my story

Was diagnosed fall of 2022 and started treatment with chemo (oral) and radiation (with an additional chemo drug IV given once a month).
The fatigue is real and the cumulative result from radiation got worse at then end. Sailed thru the first 3 weeks or so. Appetite wasn’t great and used meds to control nausea and bad diarrhea. Took meds ahead of time to get ahead of it, which worked well. I also used marijuana (gummies and a vape pen) periodically which really helped with appetite and nausea. I used a prescription cream to ward off radiation burns too. Still had some but it helped a lot. At the end of treatment, was painful to urinate as a result from the burns that were like small slits. Took a few months to regain some weight and stamina and felt great. An awful way to lose 40 pounds. Thought this was in the rear view mirror. Sadly not the case.
Six months later started having some issues and sadly it was back or never went away. Biopsy showed cancer so the next step was APR surgery. I think the initial thought of having a colostomy was worse than a cancer diagnosis but quickly changed my tune on that. (It’s really not a big deal in the scheme of things. Adjusted quickly and it’s very discreet) I Had to travel to UCSF for the Apr surgery and reconstruction. All went well and recovered nicely in about 4 months. I did have some remaining metabolic activity in the tumor bed and the tumor board was split whether I should go ahead and have more radiation or close surveillance. It simply said “inflammation” in the PET notes. Had scans every 3, then eventually 6 months.
Fast forward to December 2024. Had been having 6 mos scans and was hopeful this visit would determine if I could go to once a year scans. Sadly the SUV numbers on pet went from a 6 to 27. Took me almost 3 weeks to see if I could get a biopsy where I live and none of the IR (interventional radiologists) were willing to do a risky biopsy. So now headed back to UCSF for a specialized PET/MRI then a guided biopsy after. Am obviously concerned about this and nervous as hell but will power on the journey and onward ho!

My story isn’t typical as most ppl do very well with just the radiation and chemo. No matter what, I’m confident my team at UCSF and will receive the best possible care. The advice to someone starting treatment is to focus on YOU. Sleep when you need to and eat when you can even if a little at a time. Let you family and friends help in any way you need them. I was lucky to have a supportative husband and a lot of emotional support from everyone. Please make sure to take the meds available to head off the severe nausea and diarrhea. And, be proactive. Ask questions, and be your own advocate always. Be persistent and don’t be shy with your medical team.
Good luck and God Bless

B

Has anyone been tested before, during or after treatment for DPD/DPYD deficiency? https://test4dpd.org