Regime

Hi Doingthebestwecan 

As far as I'm aware the chemo and radiotherapy are done together, in my case I had 5.5 weeks radiotherapy (28 sessions ) I had chemo via a pump 24/7 for the first 5 days and then another 5 days at the end. Some people have chemo tablets instead and I'm not sure if they take them all the way through or just at the beginning and end. Sending hugs. Xx

Hello Doingthebestwecan

I can only offer my own experience.  I was stage 4 at diagnosis with a spot on the lung.  When they eventually identified what I had (my tumour was sub-mucosal and initial biopsies were inconclusive) I first saw the consultant in charge of my care.  I was in an absolute state of shock and terror and was going to seek a second opinion but the minute I met her, she took charge.  She told me, this is what you have, this is where it is and this is how we are going to treat it.  And she urged me not to get a second opinion saying 'this is my area of expertise, I know what I am doing'.  The treatment plan was six cycles (six months) Carboplatin/Paclitaxol to kill off cancer in the blood stream, I had a scan after three cycles to check my response, then the final three cycles, followed by a lung ablation (turned out to be one on each lung) a short break and then chemo/radiotherapy.  Her words were (forever etched in my mind) 'sometimes this cancer can be eradicated (with the treatment she outlined for my particular case) and I am hopeful that this will be your case, if not, good long-term control'.  Of course when I got home I googled her and found out she is a world-wide lead into research into anal cancer.  I didn't bother with a second opinion and everything she said came to pass.

I saw other oncologists along the way, all of whom were kind but there was a fair bit of teeth-sucking going on and qualification about the various things that were happening.  And I kept repeating to myself what the lead oncologist said, and trying to disregard the rest.  And the over-riding thing I learned from all of this is that no oncologist can determine exactly how any person will respond to a given treatment.  It is an ever-changing landscape and a good response can open up whole new avenues of treatment.  So you are right to investigate and question, and yes, people can lose huge chunks of their liver (depending on the location of the mets) which regenerates amazingly quickly.

So keep pushing, and doing the amazing job you are doing in supporting your partner through this.

Huge hugs to you both

Irene xx

Hi Doingthebestwecan,

 I’m sorry that your partner has stage 4. 
I have stage 2 and like most of the others on this site had chemotherapy and radiotherapy at the same time.

Chemo IV infusion on day 1, and oral chemotherapy tablets twice daily for the 28 radiotherapy days.

Obviously my diagnosis was much less complex but very much want to wish your partner and you well for the next part of the treatment journey. 

Hugs to you both x

Hi Irene,

You have certainly had an extremely challenging and frightening journey.

I just want to say that your posts are so full of kindness, helpful wisdom and positivity. You are so open in sharing your experiences and I didn’t realise that you had had a stage 4 diagnosis until now. 

Thank you for being there and for your endless openness and kindness to all of us out here! xx

Firstly, i just want to thank everybody for their kindness, time and general support that has gone into your replies. It is much appreciated.

Irene - it is clear to me that my partner is following something much closer to what you experienced. ie Carnoplatin and Paclitaxol and then with a scan at the end of the third cycle. So far, my partner has tolerated the chemo very well and is feeling relatively well in herself but that is not really helped by the fact that the doctors she have come across have not been anywhere near as upbeat as your consultant.

The possibility of a second opinion exists of course and is something that we would certainly consider but it is a maze trying to figure out where you might go and if you should look at NHS or private. 

Any chance we could have the name of your consultant, please?