Hello all, another anal cancer newbie here!

Hello Kat B5,

 I just wanted to welcome you to the forum although really sorry of course that you have had to join us.

It certainly sounds that you’ve had a rough time not only with the shock of diagnosis but with the fistula and surgery. What a lot to go through. 

Mine was T2N1 and I had the standard 5.5 weeks of chemo radiation, so I can’t help with guidance for your treatment journey but I’m sure that there are others on here who can. 

This forum is such an incredible resource and support with so many kind people reaching out to share experiences and advice so it’s good that you’ve found it.  I found it invaluable, and still do.

Really want to wish you well for the start of your chemo and it’s wonderful that you have such a positive attitude to fighting this. 

Sending hugs xx

Hello PEB24,

Thank you for your reply and kind words. I am so pleased to have found this forum and the information from Macmillan has been so helpful.

Just putting together my questions for the oncologist tomorrow and will update further once I know more.

Kathy x

Hi Kathy,

 I hope the appointment goes well tomorrow. Good idea to formulate a list of questions beforehand as things tend to go out of the head during a face to face meeting ( or at least that was the case for me) .

Also good if you can have someone with you as it can be hard to take everything in. Some forum members recorded their sessions and found it helpful.  

Hopefully your start date for next week will be confirmed and you will you can start beating this. 

Hugs and strength xx

Hi Kathy , 

welcome to a forum with an amazing bunch of people who will support and help you on this journey we have all been on .. 

take care 

Chrissie xx

Hi Kathy, I too was diagnosed with rectal squamous cancer with liver mets in August. I was started on Carboplatin and paclitaxel, having 6 x 28 day cycles, all being well with my bloods Friday will be my 3rd infusion of my 4th cycle.  Once I finish the 6 cycles I am then down to have radiotherapy.  My Rectal tumour was 5cm but not causing many problems, had a scan after 5 chemo infusions and it's reducing quite well, as has the liver mets.  Side effects haven't been too bad, more just indigestion and hair loss.  Good luck with your treatment, hope all goes well for you. Xx

Hi KatB5 welcome to the forum although im sorry you have found yourself here. I had the standard treatment so cant really give any advice, but just wanted to say hi and we are all here for you. Sending hugs. Xx

Hello Kat,

Welcome to the forum. There are several people here who have been through the Carboplatin/Paclitaxel regime and I'm sure they'll come in and contribute. 
I found this a really useful and supportive place when I was first diagnosed, and I'm sure you will too. Please let us know how you (and Paloma!) get on xx

Hi Kathy

Hope everything goes well today.

I also had a large tumour spreading from anus to rectum and through the rectum wall. I had a loop illiostomy done pre treatment due to a total blockage, he's named Stormzy. He has been a life saver through treatment and I even managed to gain weight.

I am 4 months post chemo radiation and they think the mountain climbing cancer might be gone. Waiting for test results to confirm.

Hope everything went well today and you can get started with your treatment.

Not sure if you have found the Macmillan stoma forum, very friendly and great practical info.

Ally xx

Hello KatB5 

A big welcome to our little corner on the MacMillan community although I am so sorry you have had to find yourself here.  This really is a place where you will find solidarity along with lots of tip and practical help.  And I am also sorry to hear about your fistula, I can imagine how distressing that must have been and really hope that those particular problems have been sorted out.

I was also Stage IV at diagnosis, and I didn't have a clue, apart from skinny poos and feeling a bit tired, although I was still walking my dog six-plus miles a day.  My tumour was submucosal and in the rectum, I had lymph node (several) involvement and a spot on the lung.  I started with six cycles of carboplatin and paclitaxcel too, my oncologist told me that this was to kill off cancer cells in the blood stream, shrink the spot in the lung, the tumour and target the lymph nodes.  I coped really well, I had a bit of a panic when the second session was cancelled due to levels in my liver, but the the oncologist was quite relaxed about it and told me that it was just my body reacting to the chemo.  They reduced the dose by 25% and I was fine after that.  The treating team keep a very close eye on you with blood tests prior to every chemo session to make sure your levels are right and can give further medication to help if they are not.  The biggest side effect I had was insomnia the night following treatment, I used to stay up late ironing or doing housework and watching television.  Slight fatigue, and of course I lost all my hair.  I found a wonderful seller on Etsy who made me lovely soft cotton caps and went on to make them in colours to match my clothes - www.etsy.com/.../BeautifulYouuHats Others I tried were like swimming hats and most uncomfortable. I lasted two minutes with the cold cap on the chemo ward, I couldn't face the number of times having treatment with my head in torture!  I bought a wig but never wore it, I started my treatment in summer and couldn't face having anything tight on my head.

You will normally be scanned at three months to see how effective if the treatment is effective, if they need to change chemo they will but this particular regimen is known to be particularly effective for advanced anal cancer.  At the end of the six months you will be scanned again and they then decide what the next step of treatment will be.

The most unsettling thing I found was not knowing whether the treatment would be effective or not.  No oncologist knows exactly how any particular patient will react to a certain chemo/treatment and plans can change all the time, there are a lot of 'ifs' and 'buts'!

At the end of the six cycles, I went on to have ablations on both lungs as there was a suspicious area on the other lung that they wanted to treat for good measure.  I then had a couple of months break and in February 2022 underwent the standard chemo/radiotherapy.  To date my scans have been clear apart from inflammation in one lung which they are convinced is not cancer but scarring.  My lungs are scanned very regularly to make sure this inflammation doesn't change.

Go to the chemo ward armed with a newspaper, sudoku, whatever you need to pass the time, although I found the ward a wonderful relaxing place with a surprising amount of laughter and chat.  And if I can help in any way at all, just ask - no question is a daft one!

Big hug

Irene xx

Thank you PEB 24. Everything went well today and I'll post a fuller update soon. It's been great to have so many replies.

Kathy x