Hi all, I was started on induction chemo at the beginning of the year for my 1b3-2b hpv positive p16 (whatever all that means) bulky tumour, but after one session of chemo they said I couldn’t have any more. I have a pre-existing auto inflammatory condition, and felt as if I hadn’t taken my biological for a few days, full body aches, nausea, was sick once, had quite bad stomach pain and chest pain, but after some high dose aspirin felt a lot better.
I feel as if they didn’t try and control my inflammatory response to the chemo and now I’m not having any more induction chemo, and the cisplatin is cancelled too so I will only receive radiotherapy (Embrace II). I’m worried they’ve overreacted because they don’t understand my condition and I’ll have a worse outcome and go through all this radiotherapy/long daily journey to the hospital for nothing.
Have many people had success with just radiotherapy? Or not managed to get through the whole lot of induction chemo or started CRT but had to stop chemo? It feels a bit wrong to question the doctors too much but also I’m worried that every time I go to the hospital, another treatment option is taken off the table, as first it was no surgery, then no chemo etc.
Hi Yennefer
I’m sorry to see your chemo has had to be stopped both on the induction protocol and for the future proposed Cisplatin treatment.
I hoped that someone with experience of the Embrace trial might have commented as it’s not something I’ve personally got experience of. My reply will nudge your post back up in the group so someone else may see it and reply, but to be honest I haven’t seen it mentioned before in the group.
I presume that your oncologist/consultant is working in conjunction with the medics who manage your autoimmune disease? I would say that it is definitely NOT wrong to question any of your doctors about any kind of treatment, and especially so that the reasons behind treatment decisions are explained fully to you. You say you are not sure what the staging and status of your cancer means, so in your position I’d be looking for that to be explained to you too. I recall that you had a large tumour, and imagine that’s why hysterectomy was ruled out.
If you wanted to seek a second opinion about your treatment plan, you can do that and it may give a different answer, or at least reassurance that the proposed change to your treatment plan is the best for you. Any consultant should be prepared to tell you how you could do this and understand why you’d want to.
Most ladies in the group who have not been able to have a hysterectomy at diagnosis, for example myself at stage 2b, have had concurrent chemo and radiation, but other ladies may have had radiotherapy only as their plan so may be able to reply with their experience for you.
I wasn’t able to have all my scheduled sessions of chemo due to my blood results, and this can quite often happen-but I was able to have 4 out of 5 sessions. My final session was not scheduled as I was told the main part of the treatment was the radiotherapy, although I didn’t have the induction chemo.
I’d encourage you to make an appointment with your oncologist to go through everything, and you could ask about the implications of not having any more chemo and how that might impact on your potential success with radiotherapy only. You might also want to chat with the consultant in charge of treatment for your autoimmune disease to make sure they are all talking to each other.
This must be really concerning for you, but I’ve learned that we need to stand up and advocate for ourselves in our own treatment plans and the reasoning behind them. I hope you’ll keep in touch and let us know how you’re getting on, and if you’d like to speak with one of the Macmillan nurses about your situation, the support number is in my signature.
Sarah xx
