Oncology appointment - 3m CAPOX recommended
Apologies for length of post but thought may as well just c and p my notes to here....hopefully some of it’ll be useful as know a few others have oncology appointments coming up in similar positions to myself.
DIAGNOSIS (T3/4 N1b V1 L1 Pn0 R0 M0; EMVI +ve) & PROGNOSIS
- it cannot always be determined whether a tumour is T3 or T4 when it macroscopically abuts the serosal surface of the colon as in my case; hence I am T3 or potentially T4
- along with the T, the venous and lymphatic invasion along with having two positive lymph nodes (of 28 taken) and poorly differentiated cells means I am at relatively high risk of recurrence and therefore chemotherapy is recommended to reduce this risk and improve my prospects of living cancer free longer term.
- Based on the data set presented by the oncologist, chemotherapy with CAPOX or FOLFOX would reduce recurrence risk by c15% and improve the 5 year Disease Free Survival Rate (DFS) by c15% compared to surgery alone. Of this, around two-thirds of the benefit comes from the capecitabine and one-third from oxaliplatin assuming treatment with CAPOX.
- in the overall data set, 6m of CAPOX does not provide any material benefit compared to 3m. Looking at the data subsets, for my particular TNM classification above, 6m gives an additional 1.5% benefit on the 5 year DFS compared to 3m if I am T3; if T4 it is 2.2%. However, 6m carries an approximate three-fold higher risk of developing long term / permanent neuropathy compared to 3m. Therefore we agreed to review after 3m treatment, however, my gut feeling if I had to decide now is even if I tolerate the treatment well, a 1-2% improvement in 5 year DFS is not enough to compensate for the significant increase in risk of long term neuropathy and thus quality of life.
- note that we also went over the data set that breaks down the overall five year DFS for each different TNM classification within stage 3 Bowel cancer patients but I’ve not included them above as am aware that some people reading might prefer not to know survival rates.
- oncologist confirmed the clinical outcome of CAPOX and FOLFOX would not be different and the reason for opting for CAPOX is largely due to it being easier to administer - less trips to hospital, longer cycles, no need for a pump etc.
- bloods taken today to make sure WBC, platelets and other measures are within required parameters to start treatment.
- iron and haemoglobin also being measured to see if I need another iron injection pre chemo starting. Chemo itself can also cause anaemia as a side effect.)
- they will test my DPD enzyme levels as some people have low or zero which means they are more vulnerable to severe side effects from the fluoropyramidines administered during treatment.
- flu jab already done last month; no need for a pneumonia jab (pneumococcal vaccine)
- I can continue to take all my meds / supplements (omeprazole, lactalose, folic acid, vits C/D, calcium) during treatment except iron tablets. Constipation effects of the latter are not desired during treatment (especially as some of the anti nausea drugs have this effect e.g. Ondansetron) plus the black stools can mask any blood loss that might occur post surgery that needs to be identified if this is the case. Blood test today will show if my iron is too low and can thus remedy via the injection so tablets not needed anyway (and in that case may not need lactalose any longer).
- should not need regular vitamin B12 injections as this is absorbed predominantly via the small intestine which is still intact and not by the right colon; though if today’s bloods show a low level I may have a one off injection / supplementation.
- there is no plan to do a scan (PET CT) pre treatment to check for any potential very small secondaries that could have started to develop given that I had a CT scan not long before surgery and that it would not change the course of action, i.e. would still be following this course of chemo to kill any such growths that have just been seeded along with any stray cells that have broken away from the tumour and into the lymphatic system/nodes/blood vessels.
- fertility preservation offered.
- CAPOX for 3m consisting of 4 cycles of 3 weeks each: 2 hour infusion of oxaliplatin on day 1 of each cycle, oral capecitabine tablets from evening of day 1 till morning of day 15 then nothing for rest of cycle finishing day 21.
- I asked about start date particularly given I had read some studies showing the benefits of chemo can start to gradually decline if start after 8 weeks post surgery. His view was 8-12 weeks is the maximum period that should be allowed to elapse before starting, the sooner the better presuming have fully recovered from the op and bloods ok.
- Hence pencilled in a start date of around 9/10 Dec which would mean the final week of cycle one would be Christmas week. Pre treatment telephone call will be booked in for 8 Dec. Second cycle thus likely to start 30/31 Dec with bloods day before.
- I will need to book a blood test online before each cycle (bloods for cycle 1 done today); if any of the blood measures are too low and / or I particularly suffer from certain side effects then I may need to wait a week before beginning the next cycle. Doesage reduction might be required if suffer badly with certain side effects, e.g. neuropathy from the oxaliplatin.
- as only four infusions in total of oxaliplatin then we agreed I would start with a cannula and if any particular issues then could poss switch to something else. Note that a port has about a 3 week wait whereas a PICC line could be organised quicker. (If ever did have a PICC then ask about getting prescription for waterproof covers.)
- went through all the standard side effects, of particular note they will give me anti sickness drugs for the nausea. Some people get throat spasms whilst having the infusion so best to bring a scarf to wrap round neck whilst having it and very warm clothing for when step outside of the hospital afterwards. Did not think a heat pad would be needed.
- if any serious side effects at home then call the 24 hour number on the chemo red alert card, particularly if any symptoms of neutropenic sepsis which is a medical emergency, and also if have a temp above 37.5 (need to buy a thermometer), feel shivery / flu like or just generally unwell.
- as I live by myself he said would it would be good to have someone staying for whole of the three months, rationale being that some patients can still get very unwell in the final week of each cycle and might not be in a position to even make a phone call if wake in middle of the night with severe symptoms. I advised that would have family here at start of first cycle and then would see how it goes but don’t envisage anyone needing to stay for much longer than the first week assuming I tolerate things ok.
- exercise during treatment is fine.
- I don’t have to self isolate during treatment and ultimately it is up to me how much risk I want to take regarding shielding. Should be sensible about it, for example social distancing at Christmas, not mixing with anyone who is ill, avoiding public transport etc. So, once COVID rules permit it, no need to restrict myself to only seeing my support bubble but need to be careful and take the recommended precautions.
- I am having genetic testing so we will go through all the different tests / results / implications once the results are back. This includes Lynch Syndrome via DNA mismatch repair (MMR) deficiency analysis - immunohistochemistry testing of the MMR protein and DNA testing for microsatellite instability (MSI); KRAS, BRAF gene mutations; and FAP/AFAP (APC and MUTYH Gene mutations).
- he believes the other polyps I have (to be removed via a polypectomy post chemo) are unlikely to be a result of FAP/AFAP as this typically involves up to 100 polyps for FAP and at least 20 for AFAP.
- also unlikely that the polyp with low grade dysplasia is the precursor to a second independent cancer in the colon which might be as a result of being genetically predispositioned to DNA repair mutations; and doesn’t think it has stemmed from seeding from the existing tumour hence does not believe this polyp is of any major concern and will be removed soon anyhow.
POST CHEMO MONITORING
- 5 year monitoring cycle including scans, CEA and colonoscopies as required
- will have a CT scan after treatment. They may do a PET CT or MRI scan instead if there are other indicators that suggest they need to look at this such as trend up in CEA level, symptoms reported etc.
- will be given contact details for Oncology CNS and consultant’s secretary.
- no real benefit in terms of the treatment given from going private versus NHS. Some patients who require drugs that are not available free on the NHS effectively become semi private where they self fund the cost of that drug in particular, e.g. Avastin. This doesn’t apply to me at this stage.
- I asked about any particular foods that might reduce recurrence risk but not enough evidence to support anything in particular so just the usual balanced diet was advised.