HPV related anal/rectal cancer

Hello Jenna!! I am sorry I am just now seeing your reply! I am sad to hear that you are stage 3, but from what I hear, it’s the same treatment whether you are 1 or a 3 so I hope you find comfort in that! As long as the main tumor is getting targeted, then the rest should go with it! But I know that doesn’t feel good to hear that are stage 3. I am keeping you in my prayers and just know that we are in this together!! We’ve got this!! I hope you are feeling a bit better lately. Xoxo

Hi Kateskins03,

Thanks for the update and good to know that things are moving along for you. It sounds like you have really focused on getting prepared and are very ready to start, so I hope you get your schedule soon. It’s completely understandable that you are anxious as despite having lots of information it’s still going into the unknown in terms of how you will feel and react. You do sound positive and ready to start beating this so have everything crossed for you.

You are right about the T2N0. It refers to the size of the tumour and it hasn’t spread to the lymph nodes. I had T2N1 and it seems that there was a full response to treatment. 

Wishing you well for the days ahead and next steps. Keep us posted if you’re able.

Sending hugs x

Hello Kateskins03, of course Mother's Day in the States is on a different day from the UK  so thank you for your good wishes for a second time this year!

I am sure you are nervous but I think I can safely say that most of us feel overwhelming relief once treatment starts; it is a tough course but the side effects don't come all at once and are very gradual when they do.  And I am relieved you will be able to rest at home without demands on your time - work can wait!

Now just keep moisturising the skin in preparation (but no cream immediately before a session, it can alter the effects of the radiotherapy) and get a calendar to mark off those days, you will be surprised how quickly the days pass.

And we will all be here to virtually cheer you on!

Irene xx

Hello there! I just wanted to come here for another update. I got the call today that my treatment starts on Monday! I have a “dry run” tomorrow with radiation, so pretty much I will go in office and do a walk through of my day to day visits. I will do everything from checking in, to getting in a gown, to laying on the radiation table (without radiation). After that I will meet with my nurse and we will get my schedule all set. Did you guys have a dilator in place during radiation? Also, I will only have chemo via IV in days 1 & 29. Did you guys have that through a port? Or just through the arm? I haven’t heard what route I am taking, but I should find out tomorrow. I’m pretty sure they would have already had me scheduled for a port if they were taking that route. Anyway, I am very anxious/nervous/ready to get this started! It’s slowly becoming more painful every time I have a bowel movement now

Hi Kateskins,

Wishing you luck for your walk through and good to know that you have a confirmed start date for Monday. It’s good that they take this time to prepare you so that you know what to expect.

 I didn’t have a dilator during treatment although they gave me some at my 3 month appointment. I had my IV through a cannula but know that protocols differ.

Hopefully you will have a very supportive team throughout and wishing you every success in this treatment journey. Of course you are feeling anxious. It’s all new and this also makes very real. 
The treatment is very effective and I really hope that your pain will be relieved soon.

Sending hugs xx

Hi Kateskins

It’s great that you have your start date, things are moving forward! Sorry to hear that bowel movements are becoming painful, but please remember that whatever pain you go through during/after treatment, it WILL get better and it’s definitely worth it. I’m 6 weeks post treatment now and starting to feel like me again. It takes time but please just take each day as it comes, be kind to yourself, rest as much as you need to (and don’t feel guilty about doing it!) Keep on top of pain relief and accept all the support that if offered. You will come out the other end and everyone is here to support you. 

Good luck 

Sarah xxx

Hello Kateskins03

The protocol varies from hospital to hospital, never mind country to country!  I had a bolus (large syringe) infusion through a cannula on the first day, followed by the radiotherapy session.  The daily chemo was large tablets which amazingly I managed to swallow.  I was given a dilator at the end of treatment although I think having one in place is more common in the US.

I hope very much that your pain will lessen during radiotherapy although it will be replaced by a different pain round about the third week.  But stay in touch with your team and take every bit of pain relief they offer.

Please let us know how you get on on Monday - we will all be thinking of you.

Irene xx

Hi Kateskins03 ,

Just to say I hope your first day of treatment went smoothly. Once that first day is done I’m sure you’ll begin to settle into the routine of your daily appointments & hopefully you’ll be able to relax a little. Regarding the painful bowel movements, have you been prescribed any stool softeners? They have certainly helped me in the past. 

Nicola 

Hello everyone! I’m here for another update… My treatment was supposed to start yesterday which was Monday, but there was a scheduling conflict between the medical oncologist and the radiation oncologist so today is my official first day! I have taken my first dose of Capecitabine an hour ago and so far so good. At 10:30 is my radiation appointment and then 12 o’clock is my Mitomycin Infusion, and then my Capecitabine again tonight. Did any of you get hand and foot syndrome? My doctor warned me that the chemo may cause that, and I am kind of nervous for that! I have purchased a cream to use so I plan to be doing that morning and night. What was your guys’s worst side effects? I’ll probably be asking a lot of questions in the coming days but as for now my first day is just getting startedl! 

Hi Kateskins,

No, I didn't get hand and foot syndrome, wonder why they mentioned that? I had a bit of an unpredictable tummy (!) and was pretty tired, and I just felt a bit ugh about food but nothing major. As the end of my treatment approached I did get a bit burnt around my underneath, but think I jest kept applying the cream they gave me and it healed up soon afterwards.

Hope it all went ok for you, and you are now home with your feet up, xx