Maintenance Therapy

Hi 126936 

I think you might find that you cope well with just Cetuximab . My mum was on it alone for ten months in her 80s and found that unlike chemo it did not accumulate. It seemed more that the side effects took turns but also became less severe and I think had she been younger she would have go on for longer on it .

She found it much , much easier than chemo .

If you have not found Bowel cancer U.K. forums you might want to link in there too . They have forums for stage 4 patients and you might find it beneficial to see how some of the longer term patients are coping as some are seven years into it and have a lot of things to share .

Take care and here’s to stability . My mum was 15 years a stage 4 patient !

Court 

 court  Thank you for your reply. That is positive news to hear. I got to my 6th cycle without any side effects apart from a little nausea, but had alot more issue from that to my 12th, mainly mouth, skin, nails and peripheral neuropathy. I am on medication for the peripheral neuropathy now and hope it works as I can do very little with my hands, which gets a bit miserable and frustrating at times. I'll check out that other forum.  Thanks again x

You might find this post helpful 126936 regarding the mouth issues?

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/279198/skin-in-mouth-peeling/2038288

Thank you 

I've got mets to liver from mucinous ovarian cancer and I'll start Carboplatin & Pacitaxol  next week.

Then for my second cycle I'll have Avastin added which will continue until it no longer works

This combination improves my OS to 18 months.

I'm devastated and cannot quite believe it.

I've been referred to hepatic surgeons and they will hold an MDT where ablation/surgery.maybe discussed for me.

  Cheekkat  I hope your treatment goes well and your OS is much longer... I am trying not to think how long I am expected to survive. I have a 14 year old daughter and a 17 year old son and a husband that I want to make many more memories with. Life is so unpredictable, I'm trying to stay positive and no one knows what is round the corner for anyone.

Morning

I have a similar story to yours but am on Panitumumab, you can read my profile.

My last treatment was number 54!! Like you I have fortnightly treatment and three monthly scans. When it gets to scan time I do get scanxiety but after results meeting if all okay try get on with life again. Side effects up and down but mostly manageable. 

I was lucky to be able to take early retirement but I appreciate how much harder it is for you as you are so much younger with teenage children.

Sending you best wishes.

Caroline 

Thanks  for the reply CST yeh the waiting on results is always the worst I think,  as once again your life is in limbo..we just have to take one day at a time and stay positive and enjoy life.

A young girl in her early 20s shared this with us at the start of mums treatment . She gave herself permission to start thinking about the scan results the night before they were due . I know it sods crazy but eventually that’s what we did and carried mum through all 65 of them . The oncologist looked startled when I mentioned the number and said have you been counting and I thought you mightoo if you were at this side of the desk ! Anyway I do get mixed up at 64 /65 !

Mum developed a way life from scan to scan which I think allowed her to gain strength .

She was part of a research into longevity and I have just found the paper work . It takes time to treat it like a chronic condition but it is possible . I think it was all about the role of T cells and how to boost them going through treatment . Or something along those lines . I will have a look !

Court 

 Hi 126936 

Yes, i have been offered same regeme for liver, lung and lymph node mets.

If you don't mind me asking; how have side effects been? Are or were you on many other medications before hand, trying to manage symptoms and pain.

For me, they are unsure the gains will outweigh the losses. I did discuss life expectancy.

Happy to share more personal aspects via private messages on this site if preferred