Chat with oncologist

You haven't mentioned your diagnosis, or what stage of the journey you are on right now. Is this pre/ or post operative after bowel cancer diagnosis. For example, to shrink a tumour prior to surgery? or mop up Chemo. following surgery?

Best

Marianne

Hi Marianne,

my apologies I was diagnosed in June & had surgery back in July. Surgery got the whole tumour & lymph nodes with clear margins. Pathology determined it’s T3 N2b M0 so due to lymph node involvement they recommended mop up chemo (capox)

Hi LeeM2084. Oxaliplatin is definately the ‘nastier’ of the 2. The affected lymph nodes have obviously been removed during the op but the chemo has been recommended as the final belt and braces to blast anything that might still be lurking. Have you considered trying the capecitabine alone for say a month? It’s a lot more tolerable than the oxy and might an acceptable ‘compromise’ with your family who I’m sure just want the best for you. If it doesnt suit you then you could stop it but you’d have given it a try?

At the end of the day it is your decision and one that you have to be happy with. Hopefully you will never have a reoccurrence but would need to be sure that you would not have any ‘if only’ thoughts if you did. Having said that the bloods and scans would hopefully pick up on it quickly and treatment could start again.

Take care

Karen x

Hi Karen 

thank you for your reply. My initial thought was to take the capecetabine on its own but for me the severe effects outweigh the benefits. 
as you say, if there is any reoccurrence then it will be picked up quick with bloods & scans. 
I know, for me at this time that it’s the right decision for me. I’m still pretty young, fit & healthy (minus the tumour) the family thing is another matter that im unsure of how to deal with, but hopefully in time they will accept my decision & support me. If not, then I will get through it on my own. 

Hi Lee

Obviously, the initial side effects you experienced on Capox, must have been very scary for you - but at least you gave it a try. I decided at the outset, not to have the Oxy (as I did not want the risk of Peripheral Neuropathy.)

You seem to have reached a decision on this, however, I have to agree with @Karen062 here. Why not give the Capecitabine Tabs. a try? You have the ability to come off them at any time, plus, they can reduce the dose if necessary. I took them for 4 mths. without any side effects whatsoever - until the fifth cycle - when I experienced Palmar Plantar in my hands & feet, & my Oncologist stopped them altogether. However, for that short period, the Tabs. worked - in that they shrunk 2 small secondary nodules in my lung - & I was able to have an Ablation procedure.

Anyway, I wish you all the best.

Marianne

Hi LeeM2084, I understand that you are reluctant to restart chemo. However, you write that you are sure a recurrence would be picked up early. Have you discussed what your treatment options would be if this were to happen, and how likely it would be that treatment would cure you in that case? I did talk about that with my oncologist, and her answer made the choice very easy for me: I took the chemo. 

I’m a little more than one year post chemo now, and have no remaining side effects from the capecitabine.   

Hi Vis,

Im having trouble even getting to speak with my own oncologist. The team that surround him are making that difficult, therefore I’m having to speak to different oncologists. I’ve made up my mind that I’m not having treatment due to the severe effects that I suffered during my 1st round. I will need to go back & have a chat about where we go from here though. My problem now seems to be that my family won’t support my decision. They are making life difficult & it’s getting to the stage where it’s ripping us apart. 

Hi, I had oxy and capecetabine 10 years ago after a resection on a t4 small bowel cancer after the tumor was removed with the affected 3 nodes as a belt and braces. Side effects for me were throat spasms. I’m still here 10 years later and my pathology was poorly differentiated. You can only make the decisions that are right for you. Unfortunately I either have a recurrent cancer or a new one waiting for biopsy results. My point is that I’ve had 10 great years and I would take the treatment all over again. Good luck and hugs., 

Hi cath,

im glad to hear you’ve had 10 years disease free but also saddened to know that you are back in the same sort of situation. Fingers crossed for you. Im hoping that my family can accept my decision and support me moving forward. I am sceptical of this though. 

good luck 

Lee 

LeeM2084 I don’t think you necessarily have to talk to your own oncologist before taking your final decision, but it is important that you talk to an oncologist.  From what you write here I get the idea that an important assumption underlying your choice is that a recurrence will be caught early and will still be curable.  If that is indeed the case I think it’s important that you discuss this with an oncologist - any oncologist. It probably is just as important to talk about what can be done to reduce the side effects and make CapMono more bearable than your experience with CapOx.
Ultimately, it will of course be your decision, but it is important to have all relevant information before you take a decision.