Hello, I was diagnosed with stage 4 colon cancer in the summer. It was a massive shock as I had only had a FIT test 7 months previously and I had also had a screening colonoscopy 5 years previously both of which were clear. I am not aware of any family history of cancer. I had no bleeding, weight loss or tiredness but had a pain in my left side for a couple of days only and was shocked to find that not only did I have colon cancer but that it had spread to my stomach lymph nodes, liver (scattered) and my right lung. I have endured 10 sessions of fortnightly Oxiplatin, Cetuximab and 5fu pump which I wear for two days following chemo. I have my penultimate chemo tomorrow and final one booked 2nd Jan. It now appears that I will probably (although depends on scan) move to maintenance therapy which will mean continuing with Cetuximab and keeping the PICC line and continuing with the 5fu pump (Folfox) . I have found Cetuximab very difficult to tolerate due to skin, mouth and hair loss issues. Has anyone any experience of this type of maintenance therapy?
Hello to you
I was diagnosed with stage 4 in summer 2022 and after starting with oxiplatin was able to have Panitumumab and the folfox pump (You can read my story on my profile)
It probably took about six months for the side effects to settle down skin rashes white blood cell count etc then it just became a fortnightly maintenance routine Not easy but doable there have been many ups and downs but I had my 52nd treatment on Tuesday - so over two years.
What I would suggest is you discuss a dose reduction which may help the side effects ? Also plan a break in treatment to look forward to (I can have up to six weeks off and always have my PICC line out to feel more normal !)
Everyone is different and I know the treatment won't work for ever but I have done a lot during the past two years new grandchild, daughters wedding, and several holidays.
If you feel able and can find a level of treatment and routine that works for you maintenance therapy can be okay.
Good luck and have a Happy Christmas and peaceful New Year
Caroline
Hi CST You could try typing cetuximab in the search box at the top of the screen to see previous posts? There’s also a tip about using coconut water for the mouth issues in the link below?
Take care
Karen x
Dear Caroline, Thank you so much for your response. I will definitely explore options for reduction in dosage and will enquire about having a break from my PICC line.
WIshing you all the best with your ongoing treatment and hope you have a great Christmas. Melanie
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