EMVI high risk

Hi Milancer 

I also had EMVI and along with my full suite of invasions it made 3 year disease free prognosis hard to hear.

My 5 year survival chance was cited to be very significantly enhanced with chemo. So I did do 6 months of 5FU with folic acid and steroids. I had half a day in chemo ward on IVs then moved over to portable IV for 2 days more of chemo, along with further steriods but in tablet form. I repeated this every 2 weeks 

Each person is different but I have had complications and ongoing chemo side effects.

A further consultation with your oncologist where you all could talk about your specific health conditions, risks and rewards while considering what quality of life elements are important to you. By this I mean work, family, travel, independence, exercise, beliefs, etc. 

By looking at both the holistic and medical rationale together, I hope you find the right solution for you.

Thanks CrumpetsOrToast for the reply. I am to have a call back next week regarding my change of mind to restart chemo, but this time with the 5FU with folic acid. I was T3 N0 M0 V1, but my Oncologist states that he excised completely the V1 with all cancer cells removed, but can't say for sure that undetectable cells may have passed through. He did declare me cancer free. So, he states a very good prognosis for me. Anyway, with your CT scan and colonoscopy in Autumn 23 after your completed chemo, what are your results, and what were your complications  and ongoing side effects. Just so I can have an idea over the same treatment. I know that everyone is different, but just an idea of possibilities I too could face. I hope that you're good and get through the 5 years. 

Hi Milancer

I had a very similar outcome to yours - following my left hemicolectomy Op. in May '19. Over 20 lymph nodes removed, all clear; plus very good margins. However, similarly, I had EMVI - but, despite this, my oncologist insisted that chemo was totally unnecessary, & the risks it presented, along with the very small 5% of possible benefits, were not worth taking.

Obviously at the time - I was pleased about her decision; however, the following March, a follow up CT scan revealed two very small lung nodules - which proved to be mets. from the bowel cancer - so then, the same oncologist recommended 6 mths. of chemo - with the hope of shrinkage, to be followed by Lung Ablation.

I decided that I did not want the infusions - as I had read about Neuropathy in hands & feet. As I am an artist, this possible side effect really troubled me......as painting is a major part of my life. & so, I decided that I only wanted Capecitabine Tabs. She reluctantly went along with my decision - & in my case, I had no side effects, until the 5th month - when I developed Palmar Plantar in my hands & feet.

I was taken off the tabs. then, & fortunately they had gone some way in shrinking the nodules - so that I could have the ablation procedure in October that year.

& so I appreciate that you have a very difficult decision to make. Fortunately there are several types of chemo for bowel cancer - but everyone responds individually to them. I wonder what side effects you had initially? Perhaps the dosage could have been reduced?

However, I wish you all the best with your decision.

Best

Marianne

 Milancer 

I was also T3N0 V1M0 but with rectal cancer, 44 nodes removed and clear. As rectal is very enclosed within the pelvis, the general opinion is that adjuvant chemo would be best. So I did 30 weeks of 5FU and FA over 34 weeks, as it got stopped a few times. This was weekly via cannula, and I alternated hands each week. Yes it is cumulative, as time goes on, and my dose got reduced twice.  However bear in mind that you can stop whenever you want, and some might be more beneficial than none. After about week 17 I said 'just one more' .......and then there were none!

I am nearly 4 years clear now, in January, having got signed off a year ago. They only seem to monitor for 3 years here.

Thanks Marianne for being so informative. You were exactly my  present position. So, one cannot rule out the EMVI resulting in a mets. in spite of a great prognosis. If you had escaped this from happening, being similar to me, then I would have by passed the chemo restart. But I feel to restart it, but with the 5FU rather than the Capecitabine tablets. What was the outcome of you lung ablation in October 2020? Are you cancer free up to this present day? 

Great news Gemmary that you are nearly 4yrs clear. Just another year for the required 5yr marker. It does look promising. I have found your reply encouraging for me to restart my chemo. It's good to know that one can stop the chemo, like yourself after week 17, and still have the benefits of it. I know that everyone is different, but better some length time of adjuvant chemo than none at all is what I have taken from your experience. Is the 5FU generally okay? You stopped at week 17. Was it too much by that week or even before, but you pressed on. What caused you to stop regarding the side effects?  Thanks again for your info..

 Milancer I was tempted to stop. I was tired and fed up. I was working throughout, and things were getting a bit much. But I did keep going with my mantra, just one more. So I did get to the end. But the oncologist did say I could stop, which eased the pressure, hence one more. If anything had got much worse I think I would have stopped, thinking I'd given it my best shot, but I plodded on. With hindsight I should have cut back on work, but I was determined to beat this cancer. So my recommendation would be to try chemo, but be gentle with yourself, and reduce the dose if possible before giving up. It is cumulative, and a concession towards the end was I got a lift to the hospital rather than driving myself, but I think I should have cut some hours rather than reorganizing my week. Fatigue and brain fog were the main problem but some neuropathy in my hands didn't help.

Take care, whatever you decide.

Hi Milancer.

Yes, I think at that time, my oncologist's decision was perhaps the wrong one - as she poo pooed the 
EMVI diagnosis. My daughter had been surprised about this, & had questioned her own GP - who replied that 'had it been me, I would have asked for mop up chemo.'

However, as I said, I was pleased with the decision - & chose to believe in her expertise. In retrospect, I would have asked for chemo - even if just Capecitabine Tabs (which of course I had later down the line.)

The ablation technique was a very simple & non invasive procedure - involving an overnight stay in hospital.

I have had follow up CT scans - which were every 6ths (but are now yearly.) plus blood tests showing CEA markers. Both of which showed normal in the past few months. I have recently had a letter - stating I no longer need colonoscopies.

I am now in my fourth year following initial diagnosis, back in May '19.

I sincerely hope that the next chemo treatment you start - will prove a lot easier, than your experience with Capecitabine.

Marianne

 Milancer 

Your quest for information is valid. I feel reviewing your own specifics conditions, risks/rewards and needs with your specialists will give you the best perspective.

One year in I am eager to get well enough to return to work and I am on enhanced surveillence following my 1st year review. I also have my 6 month review soon for cell treatment in a different area.

Try to not think of this journey as a linear. For some it maybe a quick dip, for others it's more of a whack-a-mole challenge. Regardless, I find hunting for rainbows with each downpour a delight.

Good luck choosing the right route for you.