anal cancer newbie

I am sorry you have to go through this treatment, but remember that so many others on this site have also and are doing quite well.  It is difficult not to be on an emotional rollercoaster at this time, not knowing what to expect.  Treatment certainly isn't any fun, but it is totally doable.  I'm glad you are keeping a positive attitude.  We are all here to help you with questions you may have--and you will have some.  The folks who have been through this treatment give some of the best advice on how to handle side effects, so please speak up and let us know how we can help you. 

You are asking for some advice upfront, so I will give you a few tips.  One of the most important ones is to drink, drink, drink--water is very important and you must stay hydrated.  You may lose weight during treatment because many people find that their appetite tanks (mine did), so if you are on the light side, try to eat well prior to treatment and if possible, put on a few pounds (should be easy with the holidays!).  Be sure to ask your doctor(s) for prescriptions for pain meds so you'll have them on hand once treatment begins--and do not hesitate to take them!  The same applies for nausea meds, which should be taken at the first onset of nausea for the most effectiveness.  Be prepared for possible mouth tenderness or sores (a side effect of the chemo)--you may want to begin rinsing with a mix of baking soda or salt and water at the beginning of treatment to ward this off totally.  Some people have used a cold pack to prevent or cut down on hair loss (another possible side effect), so ask your doctor or chemo nurse about using one during your infusions.  You may reach a point during treatment where you do not feel like driving yourself to treatment, so have someone lined up in advance who can take you, should you not be up to it.  Do not refuse any offers of help, whether it be cooking or housekeeping--letting relatives and friends help will be good for both you and them.  I don't know if you work or not, but if so, talk to your superiors about the possibility of taking time off if needed--some people are able to continue working, some not. 

That is all that comes to mind right now.  I'm sure others will chime in with other suggestions.  The bottom line is you can do this, you will get through it!  Don't hesitate to ask for help, whether it's from those of us here, your family and friends, or your medical team.  I wish you all the very best as you begin this journey.  Please keep us posted on how things go for you.

Are your lymph nodes clear? I assume you've had good news on your scans and no mets were found? 

My best advice is lay in supplies you will need before hand so you don't have to make an exhausting shopping trip when you don't feel good. I think I went about 3 mos without stepping foot in Walmart. Accept all the help you can get. I was on pain meds and different friends and family took me to radiation and that social interaction was really wonderful. Don't hesitate to call your team, even if it's after hours. Most of us don't want to "bother" anyone but if you get mouth sores on a weekend for example, you need a prescription for magic mouthwash now, not on Monday. Good luck and keep us updated.

I took antianxiety medication during treatment. It was a big help.  You definitely want to get lots of rest so your body can heal.

Correction: I finished treatment in Jan 2016! It seems like a long time ago! 

I don't want to overwhelm you right now with after effects of all this but you probably won't be quite the same after treatment and will have to adjust to a new "normal". It's different for everyone but I became lactose intolerant, get diarrhea with fatty foods, and still occasionally have blood in my stool. Salad can still give me diarrhea but slowly I have been able to add back most fruits and vegetables. I also get muscle spasms in my rectum at times and take a muscle relaxer a lot of nights to help with those. Another thing that surprised me was all the muscles in my pelvis tightened up after radiation- PT was helpful for that. You can also get vaginal stenosis from the radiation and you can read about that on other threads. If you haven't gone through menopause yet, the radiation puts you into menopause too so a few months after treatment you might get hot flashes. If you have an IUD in place get it out before treatment, mine got scarred in and had to be retrieved in a minor surgery. Those are all things I wish someone had told me before all this- I didn't find this site until about a year after treatment.

Your radiation oncologist is providing you with accurate information; as he has mentionned vaginal stenosis, you should ask him or hs nurse about vaginal dilators.Some centers provide them, or they can be ordered.*  You might begin to use them before treatment starts; some women use them during treatment, but that might be too painful, but definitely after treatment; there are also physical therapists who specialize in pelvice floor therapy.  this is all jumping the gun, but goood to be aware of,

I think the dilator issue is important.* I just have the dilators, not the whole kit.  I think you can probably order the dilators separately  https://www.vaginismus.com/

I really doubt that you will need to take off a year for recovery.  You drs estimate seems reasonable. You may have some lingering bladder and bowel issues, but you should be able to slowly resume regular activities.

It may depend on where you are being treated, but my biggest source of homecare information and support came from the nurses; I was in constant communication with a teriffic nurse practitioner via the electronic health system.  I saw the Drs , but the nurse supplied me with creams and other things, and was always available through the EHR..  So bond with a nurse!

I also had some consultations with the dietician at the cancer center.  Another helper was the social worker who provided me with info on local resources(transportation, meal deliveries,etc--if needed) The American Cancer Society often has volunteers who will drive  you to and from treatment. Counseling services were also available, but I didn't use them; my sister was very upset, and as a family member, she was able to have some sessions with the psychologist. I would find out about everything that is available at your treatment center and in your community--many things are free or very low cost---good to know, just in case.

I only work pt-time on weekends.  I was ok for the first 3 1/2 weeks and then fatigue, loss of appetite and need to be near a bathroom caused me to take leave. My recovery(because of bowel issues and general fatigue and weakness, was longer.  I don't think you can accurately predict everything; it sounds as if your emplyer is very reasonable and you will be able to take the time that you will need.

Unlike most people, I had 5FU in pill form(capecetabine/Xeloda) instead of an infusion via a fanny pack. Although I had very little appetite, I did not have nausea,vomiting or mouth sores...my hair thinned a bit and after treatment ended there was some shedding for a month or two, but I didn't lose alot of hair.

I was slightly constipated before treatment, had diarrhea during, and several months after treatmenet, and am now quite constipated and take Miralax (and sometimes coalace) every day.  I always had a cast iron stomach and could eat everything and I am still able to eat everything.  

"but I'm hopeful and try to remain positive, take it step-by-step."    this is the absolute best approach...ask questions, ask for help and accept help

Best wishes for the holidays and the new year...we will all be here for you!

My wife Melissa was diagnosed with 4.5 cm tumor on December 7, 2016. Didn't start treatment till 27 January 2017. It was definitely very hard waiting for the start of treatment, you want it gone NOW! But from everything we read and we were told, 1-2 months won't make much of a difference. Treatment was not fun, especially after week 3. But she is NED after about a year from diagnosis, eating like she used too. She also had the oral form of 5FU, called Xeloda.

Stay positive, and ask your nurses about any questions you have. They seemed to be very responsive, and more available than the doctors on short notice. This forum helped us a LOT, with knowledge of what was coming, tips for coping, etc.Melissa didn't want to read the forum, she was afraid there would be too much that would make her more worried. But it was wonderful for me to be able to understand things that could help her through, and things to watch for that might be worth following up with the medical team.

There are so many great folks here that have been through this. Don't hesitate to ask if you have a question, there is someone that has been on the same road, and will let you know how they handled just about any situation. As a resource, this forum was very inspiring to me.

I had to wait 6 weeks between diagnosis and beginning of treatment and it seemed like an eternity.  However, I'm happy to say that my treatment was successful and I am headed toward 10 years post-treatment.