deciding whether to have chemo . warned only 5-10% effective

Im afraid no one can make that decision for you.

All I can offer is That I decided to throw everything offered at it,then I would have no regrets or "if onlys"

You can always start chemo and stop at any time if you feel thst it isnt for you.

Do click on members names to read bios to get some ideas of how various people got on

All the best  with whatever your decision is

Kath

Hi cap.

Would you feel comfortable sharing more about your quandery? I ask as it may help people share some specific experiences with you, to help you weigh things up?

I am 77 years old .had surgery to remove a stage 3 tumour from my colon 8weeks ago. there was some spread to lymph nodes and lesions in my spleen. if I decide to go for chemo although it is not very effective, the only one I can have because of other health problems it needs to be started in less than 5 weeks. I feel I dont have enough info to make the decision

Hi cap.

I also had limited chemo options - actually just one too. I was given 5FU (also known as MdG). I was advised to start asap after my colon surgery, ideally within 8 weeks, so I understand the rush feeling especially on such a big scary topic such as chemo treatment.

You can click on our usernames if want more of diagnosies and background.

Do you know which chemo they are proposing for you? Are there specific worries you have about the chemo that we can try and help give you some lived experiences on?

Yes they like to start asap after surgery.I was told 6 weeks for capox ideally.My barbie bum needed to be healed and luckily It was with a few days to spare.phew!!

Can you ring the hospital for a chat about options?I know the mountains of paperwork that they give you to explain it all can be daunting but its worth ploughing through it all..

All the best

Kath

CrumpetsOrToast said:

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the chemo I can have is Capecitabine. . I have read as much information as possible but still struggle to make a decision. 

Hi cap.

So my chemo regime was different but other can help with Capecitabine specific experiences.

My personal decision was influenced by having invasions and a significant double figure 5 year survival prognosis improvement possibility.

While there are no guarantees that I'll reap the prognosis rewards, at the time I wanted to throw everything at it and didn't want to regret not trying.

If you do go for chemo, my best advise is let your oncologist and CSN know what is important to you in lifestyle and then let them know all your side effects as soon as you experience them so they can adjust your treatment plan accordingly.

Good luck with your decision and feel free to ask anything

Hi cap I’m currently taking capecitabine tablets. I tried Capox, oxaliplatin infusion alongside the capecitabine tablets, and it was too much for my body to handle. I was only offered the tablets, or a different infusion. Initially, I agreed to just the tablets, but have decided to “throw everything at it”, even if I only manage it once. I spoke to a macmillan nurse a few days ago regarding taking just the tablets. Her view was that they wouldn’t offer them if they didn’t think they wouldn’t be effective in some way. Do you know if your oncologist has done molecular analysis? Mine said she is waiting for mine to come back, which may open up alternative treatment. Worth a chat with either your oncologist or nurse. Best wishes whatever you decide. I was only given 6-12 months if I do nothing. I’m 59, and still have a few things I would like to accomplish. 

Hello

I had a left hemicolectomy back in May '19 & all margins were clear, with no Lymph nodes involved. However, I did have EMVI  Veinous invasion at the site. Following this, I saw an Oncologist - who stated that there was no need for any form of Chemo treatment. In fact the stats. she gave, were far lower than you were given. In fact, she was very adamant that the risks to health could be very harmful. Obviously I took her advice, (as a medical expert,) & was relieved in not having to undergo any further treatment. My daughter was not so sure about this decision, & when at her GP's asked what he thought & his reply was to have chemo. There was always that little niggling doubt in my head - but I let it be.

However, after a follow up CT Scan the following March '20 - it showed that I had two small Lung Nodules - &this involved seeing the same Oncologist again. This time, she did recommend Chemo - Capox, the combination of Oxyplatin & Capecitabine Tabs. for 6mths. (to reduce the nodules,) in prep. for a Lung Ablation to follow.

I declined the Oxy, infusion, as I am a practising artist, & did not want to endure the possibility of Neuropathy in my hands. (Sometimes quality of life is more important than quantity of years.) Yet also, painting is a very significant part of my life.& so, I told her that I would only take the Cap. tablets. She was a bit taken back at first with my decision, but she agreed. I personally think that as patients, we also have the right to choose for ourselves, without medical intervention being thrust on us.

I took the tablets for 4 cycles, without any problems whatsover. I had no sickness, diarrhoea, or tiredness, & continued with my normal diet. My Oncologist was so pleased with this, that she upped the dosage. However, I then developed Palmar Plantar in my hands & feet - which was doable for a few weeks, but the skin starts peeling off, & it becomes very uncomfortable, & so, she took me off them..

However, this treatment reduced the size of the nodules, & I was able to have a Lung Ablation in Oct '20.

I am still having follow up CT scans & blood tests, but so far, all have been normal & clear. I am now 74 years.

Of course it's a very difficult decision for you to make, based on such low stats. but looking back on my personal experience - I now would have asked to have the Capecitabine Tabs. following my initial bowel Op. but obviously, I had no knowledge of Chemo at that stage.

Best wishes in your decision.

Marianne

Hi Marianne I’ve just read your post and wanted to say a big thank you. I’ve only just started back on the cape tablets and wasn’t sure what to expect in terms of effectiveness. I feel more hopeful now. I’m seeing my oncologist in just over two weeks time. I am going to try a different infusion hopefully, as I didn’t do well with the oxaliplatin. I completely agree with you that quality of life is incredibly important. I’ve already told my oncologist that I’d rather have less time, if I can carry on living a relatively “normal” life. Wishing you well with your future treatment.