Start treatment 22/9 - and I have questions :-)

Hi Sarah

From what i recall the mitomycin didn't take very long, I think it was about half an hour. Can't help with the strata XRT as I didn't use it, but I would be inclined to buy from a reputable site. As for what the hospitals hand out that seems to vary from hospital to hospital, my hospital were very good but some people's seem to be the opposite. I think the strata XRT is supposed to stop the skin breaking down so skin wounds may not be an issue for you if you are using it. Good luck for the 22nd. Sending hugs. Xx

Hello Sarah

I bought the StrataXRT from the uk company and it was the actual product.  I spoke to someone from the company who was really helpful and applied it from day one.  I also printed out a few pages from the company website and gave them to the chief of the radiology department as she hadn't heard of it and was warning me not to use creams prior to my sessions.  She checked and I was given the go ahead.  In the meantime, there is nothing stopping you in moisturising the whole area back to front right now and all during treatment (although not directly before).

The infusion probably took about half an hour, from inserting the cannula to a nurse administering it through the cannula in a bolus (like a giant syringe).  It was painless and I then had a short break before going to the radiotherapy.

I promise you you will calm down once treatment starts - you will just be so relieved that something is being done.

Irene xx

Hi Sarah,

You are very wise to be careful in doing your research, there is some scary stuff out there! I just wanted to say welcome; others have given you the information you need but I thought I would add that the first infusion of mitomycin can make you feel a little queasy so take any anti-sickness meds you are offered, but don't be too concerned as the chemo tablets you take each day are a different drug. I didn't find they made me sick at all, although I did lose my appetite a little. 

I didn't have strataXRT but it seems to be excellent, I was just given some cream and then a gel to use and I did get a bit burnt, although it healed up ok once I started to recover.

Good luck with it all, please let us know how you get on. xx

Hello Sarah,

I start my treatment this Monday. In terms of prevention my oncologist advised starting to moisturise the pelvic area and btw the legs now. I have been using aveeno just because that seems to be the one that a lot of people on here have been given.

i can relate to the nerves and it has taken me a while to get my head round everything. I too am on mityomicin on the first day of radiotherapy and then capecitiban (I think that’s what it is.) 

All the best with your treatment!

Vicky

Best of luck for Monday Vicky. It’s good to know there is someone starting much the same time as me. Keep me posted with how you get on. xx

Will do Sarah!

Hello Sarah,

Just wanted to add another welcome to the forum although sorry about your diagnosis. The anxiety build up before starting treatment is awful and I do feel for you. It can be such a relief to start.

The mitomycin infusion takes about 30 minutes as others have said. The appointment itself can take a lot longer though as at least for me, this is when all the tablets are given out and explained. 
This is the supply of Capecitabine, anti sickness tablets, a short course of steroids, mouthwash and Imodium. The nurse also ran through the things to look out for and explained the alert card and when and how to seek help if needed. 
I also remember having to take the first dose of Capecitabine and steroids while there.

 I didn’t know about strata XRT when I started treatment although wish I had. Looks like you have had good advice here.

I wasn’t giving any information at all about creams so I think this is pretty normal. I was told I’d be given these as I needed them, later in treatment. Advice certainly seems to vary depending on location.

The waiting to start is far worse than starting so really wishing you well on getting through until 22nd. Try and do lots of nice things if you can. Xx

This is so helpful in managing my anxiety caused by not knowing what is going to happen. Thank you so much! I’ve got my chemo pre-appointment on the Friday before I start, so now I know a bit more about what to expect. On the Monday I have to report for my chemo infusion at 0900 and my radio is booked for 1100. Poor hubby will have a long wait (but he will probably spend most of that time looking for a car park space ). 
We are making the most of the last week of appointment-free time with a mini break to Ramsgate in the hope of taking our minds off things.  Any tips for what to do there in the rain!

Hi Sarah, can I ask which hospital you are under, I'm with Northampton and arrived for my first day of treatment this morning to be told there was a shortage of mytomicin and therfore I couldn't start today and that it would be two more weeks, you can imagine how I feel after all the lead up! Hope all goes well for you next week xx

I’m with Royal Berkshire (Reading). That’s the worst situation to be in - really hope they can sort it for you quickly. Anxiety must be in overdrive and I can’t believe they didn’t tell you in advance. I have my chemo pre-assessment on Friday so will definitely be asking them to confirm that they have the necessary supplies!!