StrataXRT

Hi Jaycee12 I personally haven’t used this but I’ve just read an article on a trial of this drug and it was found to be effective at lowering skin toxicity following radiotherapy. We do have some members of the group from America so perhaps this is something they may be able to comment on if it’s available there or hopefully if anyone is reading from Australia they may have some experience with this gel.  Bev. 

Thank you Bev. I get my results from the PET scan tomorrow and petrified and looking at how I can prepare myself if (most probably) I have to have the chemoradiotherapy. 

Julie

Hi Jaycee12 (Julie),  I really do sympathise, waiting for scan results is truly awful, it gets a bit better as time goes on but doesn’t go away. There will be a lot of information for you to take in tomorrow, I used to take notes in a notebook as it’s so easy to forget things. If you’re able to take someone with you for support that would be best, you could perhaps call the hospital tomorrow and check that’s ok. Will be thinking of you. Let us know how you get on if you can. Bev x

Hi Bev I had the results of my PET scan today and when I got to the hospital before seeing the consultant I was told to go for a blood test and have my height and weight done. When the nurse  weighed  me she said are you the new patient? I said I don’t know yet as I have not seen the doctor so she said we call you all new patients when you come for your results. I more or less knew then the outcome would be. My husband came with me as I am quite deaf and needing another pair of ears. She went through the literature and to be honest it’s pretty much what I have found out about on this site. There is a couple of issues like my bones and she said I will have a DEXTA scan and vit D and calcium test. I am osteoporotic. It has not spread to anywhere else but the tumour is pretty close to the spincther. Lots of info on side effects and long term side effects which is pretty upsetting but I know it might not happen but we don’t know. I mentioned the StrataXRT and she said she had not heard of it but will look it up. The surgeon who did the surgery at my local hospital told me that he cut it out plus a margin but found cancer cells but told the hospital I have been transferred to it was a biopsy but she did not seem happy that he sent little information on what he actually did. She has got to find this out. As you will understand and all these other ladies and some men on here it’s mind blowing and I’m not sure what to feel. Treatment should start in three weeks! So from the 5th December when I had my first visit to my GP I still have time to wait. My GP actually phoned today to see what’s happening as she said she wondered how I was. Thank you for listening and I am sure I will be asking you all lots of tips. Julie x

Hi Jaycee12, 

Firstly I’m sorry that you’ve found that you’re facing the treatment, on the positive side this will hopefully the beginning of your journey to being disease free. 

At the appointment you’ve had today the shear amount of information that you’re given can be completely overwhelming. Every possible side affect, however minute the possibility of it occurring has to be mentioned by your oncologist & I remember coming away from that meeting feeling total information overload & quite frightened. But as you will have gathered from being in this group there are issues that crop up during treatment that most of us get then a whole array that some do & some don’t, so my best advice would be once you start your treatment just take it as it comes.

It was nice of your GP to check in with you to see how you’re doing, it’s always good to know you have their support. 

Nicola 

Hi Jaycee12 thanks for letting us know the outcome and it's good news that the cancer is still localised. It does sound like the doctor should have sent more information. When an anal cancer tumour is removed, if clear margins cannot be achieved then  the usual procedure is to have the chemoradiation treatment. This is. a combination of a one off short infusion of mitomycin administered intravenously on day one of treatment, followed by 8 tablets of capecitabine a day for 5.5 weeks, Monday to Friday. Radiotherapy is also daily Monday-Friday. The radiotherapy can be quite time consuming in terms of  travel, unless you live close to your treating hospital. The actual radiotherapy itself is only of a short duration, mine was about 8 minutes each session. The chemotherapy tends to be well tolerated, the only side effect I had was feeing nauseous from day 2 to 7 of chemo. The side effects of radiotherapy build up, I felt the effects from about week 4, which were diarrhoea and tiredness.  It is, like you say, mind blowing to get a cancer diagnosis and have to have these treatments but you will come through it.  You may not suffer any long term side effects, it's too early to tell but the main side effect of the radiotherapy seems to be a  narrowing of the vagina, this can be alleviated by the use of dilators after treatment but I wouldn't be concerned about that for now.  There's lots of people on here at all different stages of treatment and knowledge with a wealth of experience between us so please ask any questions, nothing is too personal! Bev x  

Thank you Nicola. I have been reading lots of members comments here and It allows people to say just how they are feeling which is important and in a funny way a comfort but sometimes scary. I am sure I will have a few in a few weeks time.

Julie

Thank you Bev, it is great to hear that I possibly will only experience just some side effects. To be honest when she read them all out before I signed the consent form I was feeling like making a run for it! I have three weeks to try and get in tip top condition, feel stronger and more positive and accept I just have to go with it. At the moment it’s hard and I know you will all help with your experiences of coping. Julie x