Stage 4 bowel cancer

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Deano65

Panitumumab toxicity at dose 79?

Just spent a week in hospital after being breathless, fever, dry cough no phlegm and fatigue.
Treated initially for pneumonia, then cultures showed e coli in my lung, ground glass opacity in lungs and panitumab toxicity and a 4mm increase in tumour size despite treatment.
Had steroids and antibiotics and feeling much better just petrified as all is to be discussed with my oncologist on Thursday.
Treatment probably going to change, hopefully I can still have treatment and I need the ground glass opacity explaining.
Has anybody else on panitumumab experienced toxicity. They said it was literally killing me and doing more harm than good.
I'm staying positive that there will be something else as I am still on first line treatment for over 5 years.

Liz Blakelands

@Deano65
Hi
So sorry you have been really unwell and spent a week in hospital. It must have been very scary.

I don't have any experience of panitumumab but just wanted to send you a big hug, I 'm sure someone will be along soon with experience that will help you. Liz :x::x:

louise28

Hi @Deano65 so sorry to hear about this. I think I've heard of this happening so it might be worth having a look using search function.

Could the tumour be removed by ablation or surgery to keep you off the chemo?

:x:

louise28

It may be @Gypsy and @Ange1974 who mentioned this before. I hope they don't mind me tagging them

Baxter2

Gosh @Deano65, this must have been a big shock for you especially after having 79 cycles of it! Like you, I'm still on first line too with 135 cycles. I'm glad your now at home recovering but can understand your concerns and need for more information. I've not heard of others (or cannot recall) having this after so many cycles but Im sure it happens. I see @louise28 has a better memory than me and has just tagged others who may know more. I can understand your concerns since you're possibly similar to me in that you've had chemo for so long it almost becomes your comfort blanket as it's keeping cancer at bay. Sorry I don't have any answers for you though. I hope you manage to find out more prior to your appointment with oncologist so that you can make informed decisions about your treatment.

Please keep us posted if you can?

Lots of love,

Karen 🌻🌻🌻🌻🌻

Deano65
Quote from @Baxter2:
Gosh @Deano65, this must have been a big shock for you especially after having 79 cycles of it! Like you, I'm still on first line too with 135 cycles. I'm glad your now at home recovering but can understand your concerns and need for more information. I've not heard of others (or cannot recall) having this after so many cycles but Im sure it happens. I see @louise28 has a better memory than me and has just tagged others who may know more. I can understand your concerns since you're possibly similar to me in that you've had chemo for so long it almost becomes your comfort blanket as it's keeping cancer at bay. Sorry I don't have any answers for you though. I hope you manage to find out more prior to your appointment with oncologist so that you can make informed decisions about your treatment.

Please keep us posted if you can?

Lots of love,

Karen 🌻🌻🌻🌻🌻

Thanks Karen. They have booked chemo for 17 Aug so they must be planning some treatment. Like you say after so many doses you assume it will just carry on as it has.

Quote from @Baxter2:
Gosh @Deano65, this must have been a big shock for you especially after having 79 cycles of it! Like you, I'm still on first line too with 135 cycles. I'm glad your now at home recovering but can understand your concerns and need for more information. I've not heard of others (or cannot recall) having this after so many cycles but Im sure it happens. I see @louise28 has a better memory than me and has just tagged others who may know more. I can understand your concerns since you're possibly similar to me in that you've had chemo for so long it almost becomes your comfort blanket as it's keeping cancer at bay. Sorry I don't have any answers for you though. I hope you manage to find out more prior to your appointment with oncologist so that you can make informed decisions about your treatment.

Please keep us posted if you can?

Lots of love,

Karen 🌻🌻🌻🌻🌻

Quote from @louise28:
Hi @Deano65 so sorry to hear about this. I think I've heard of this happening so it might be worth having a look using search function.

Could the tumour be removed by ablation or surgery to keep you off the chemo?

Before covid I had just 2 tumours both less than 1cm and asked about radiotherapy but was told when I was diagnosed there were lots in my lungs and they would just regrow so chemo best option. During covid had 12 15 and 19 week breaks and tumours now almost 3cm as treatment hasn't seemed as effective fir a while. Used to get a good 5mm decrease but for last year no decrease and March scan showed increase as has the scan done in hospital. I will ask about options tomorrow. I'm so well when not on chemo and only get mouth ulcers when on it.

louise28

@Deano65 if I were you and there are only.two.tumours I'd push for something like ablation or sabr because it can be minimally invasive. Only two tumours visible at moment is good and yes it's possible the orders will come back but they may not :x:

Gypsy

Hi @Deano65 . I was initially considered 'cured' just by my surgery for early rectal cancer (Spring 2011) and I did not need chemo and was put on annual check up scans, with the first of those due in April 2012. In the early part of 2012, about mid January, I got a horrible chest infection and had to have 2 courses of antibiotics and steroid inhalers before it began to get any better. I had never had anything like it in my life before or since. I was very breathless with any exertion. I was basically all better by the time I had that first CT scan in the April and no longer breathless but the scan found a lung secondary and a PET scan found a liver secondary. The lung consultant said that he could see the signs of the infection in my lungs and on the CT scan, it appeared like tiny black flecks everywhere. This basically became scarring which is what they call ground glass opacity. It has been reported on every single scan since but it does not affect me at all in any way. I had open surgery (wedge resection) to remove the lung tumour but had keyhole liver surgery a month before that to deal with that one- that was July and August 2012. Then I had chemo for 6 months. The lung infection was only indirectly related to the recurrences in that my immune system was battling that although I did not know it at the time and had felt fine before the infection. But it was the lowered immunity that had enabled an opportunistic chest infection to take hold. I hope this helps you a bit- honestly I am totally fit and feel no effects from either the ground glass scarring or the wedge out of the lung. Interestingly though, with Covid arising and antiviral drugs available, I received a letter from the NHS saying that my records indicated that I might benefit from antivirals should I contract Covid and I have a number to ring if it happens and I get it though thankfully, I have escaped it so far. But I can only think that it is because I have the ground glass scarring in my lungs as I can't think of any other reason.
I wish you all the very best with your treatment and send all good thoughts for healing. :x::x:

Baxter2

*Message from Deano65*

Hi all, thanks for your support.
Saw oncologist yesterday. Having 3 month break to let me fully recover from e coli pneumonia.
Panitumumab now acting as an accelerator so has to be stopped. But it has done a fine job for 5 years.
Plan to start oxypalitin and 5fu or something else beginning with c in 3 months though a scan and review in 6 weeks to see where we are at.
Still very positive as always. Can't change it, just gotta get on with it.
Going on a Norwegian Fjords cruise tomorrow and see what else I can pack in before restart of treatment.
Thank you
I don't know how to tag the others in