Bowel cancer treatment and side effects

kawa909

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.

PRE-TREATMENT

- 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.

TREATMENT

- 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.

GENETIC TESTING

- 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.

OTHER

- 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.

cyclingjohnny

hi @Stella 2020 I was just wondering if there is anything specific that I should do in regards to Dental hygiene during chemo, and if there is likely to be any problems that are likely to crop up, thanks cheers john.:x::x:

Stella 2020
Quote from @cyclingjohnny:
hi @Stella 2020 I was just wondering if there is anything specific that I should do in regards to Dental hygiene during chemo, and if there is likely to be any problems that are likely to crop up, thanks cheers john.

Hi there is a good leaflet about it
www.brushupuk.com/.../BrushUpUK_PatientCancerFlyer.pdf
I have bought Bioxtra toothpaste and curaprox tooth brush from amazon. They are actually quite nice to use. You are not supposed to use electric toothbrush or toothpaste contain SLS as one could be prone to mouth ulcers. I did not use any corsodyl mouthwash as can’t stand the stuff. You should not use it for more than 2 weeks as it will stain your teeth. Just need to have a dental check up before the chemo started as dental procedures that cause bleeding generally will not be permitted during chemotherapy. Otherwise, keep up with brushing and flossing. If flossing is causing too much bleeding, you can get waterpik from amazon to clean in between your teeth.
Your dentist may able to prescribe Duraphat 5000ppm toothpaste to prevent decay.
The key is prevention since you can’t have anything done for a while.
Hope this helps. Let me know if you need any more info. :x::x:

cyclingjohnny

thanks @Stella 2020 for the great info, cheers john.:x::x:

justhope

Hi @cyclingjohnny and @Stella 2020 thank you for asking the question John, and thank you for answering it Stella.
Lots of useful information there. My husband was talked through info re mouth ulcers etc and so has changed how he manages his mouth, he has switched to using waterpik I got it as a Xmas present last year. So handy we have one.
His dentist in the past gave him the Duraphat, it has a strange salty taste he says, it’s hard to get dentist appointment at present, is it possible to get prescription without seeing dentist do you think? Amongst the medications he was given last week at the chemo unit he was given a mouthwash , they said you can dilute with water if too strong but I didn’t know about not using for longer than two weeks.. thank you too I have just read the leaflet you put a link too. :x::x:

Stella 2020

Glad of help @justhope , you can always give your dentist a ring for duraphat toothpaste. They cost £8-10 on private prescription. GPs can also do it but most refuse due to budget reasons? Corsodyl mouthwash does kill bacteria in your mouth but not normally for long term use. Good dental hygiene and not sucking sweets continuously are the key. :x::x:

Lucie

Thanks for asking the question @cyclingjohnny and for your reply @Stella 2020 Very timely advice. It was good luck that I had a dental checkup and hygienist visit just on Monday gone!

scot

I hope everything goes well for you @kawa909 I just finished 3 months of Capox at the end of Nov and the neuro issues I did experience have now cleared up. I found the first three days after oxy the worst but this I felt was actually due to the steroids basically stopping me sleeping for 3 days on each cycle, I felt like a zombie by the third cycle though that was probably also due to the regular nightly toilet trips to deal with my stoma! My advice is use that helpline as and when you need to, they are great and very understanding of all your concerns... I hope you continue as well as you seem to be doing so far 👍

kawa909

Thanks for the advice @scot and glad your neuro issues have now cleared up. I was ok sleeping-wise with the steroids but I know that can be an issue. Did you find that side effects in general were cumulative and got worse each cycle?

scot

My oncologist assured me that would be the case but I kind of found it to be a case of the neuro issues lasting for around 5 days each cycle and in terms of the coldness I just drank lukewarm water and peppermint tea for 3 days and did not go near the fridge without gloves for roughly 8 or 9 days after after each oxi session, luckily the capecitabine didn't have much of a side effect other than tiredness. I was getting extreme pins and needles from each oxi infusion and they reduced my final dose as a result if this. I do notice that I feel the coldness when I'm out for my daily walks alot more than I used to but in all honesty your body and immune system are taking a good kicking through the chemo so I guess this is to be expected!

scot

Oh and I forgot to say I really suffered with 'first bite' effects for a couple odays after each oxi infusion... Hopefully you don't, if it does rear its ugly head my advice is just bite very slowly with your front teeth for ten seconds or so and it's a much more manageable pain and dissappears quickly!

kawa909

Thx @scot yep I got first bite pain but only fir a few seconds so nothing too bad and it gradually disappeared so fine now. My hands seemed to be fine getting stuff out of freezer but if I hold onto them for more than about 20 secs then could start to feel it.

I’ve always felt the cold so started off my runs in an extra layer at first but found was overheating and that it’s just mainly the hands that are affected so wear a thicker pair of gloves depending on the weather. Just realised I’ve not had the ‘freezing shut eyelids’ thing for the last few days so hopefully that’s gone for the rest of this cycle as it’s a bit tricky trying to run when you can’t see!

cyclingjohnny

Blind running sounds interesting @kawa909 take care cheers John.

kawa909

@cyclingjohnny probably less interesting than blind cycling!

cyclingjohnny

Yes @kawa909 yes blind cycling would get the heart rate up, will have to see and wait for the freezing eyelid's, hope you're still doing well on the treatment, take care cheers John.:x::x:

kawa909

Yep all going well here thanks @cyclingjohnny feeling 100%, two runs today, cold sensitivity effects seem to have almost completely gone so looks like I’ve been very lucky so far with regards to side effects. Oh and on my second run today was first proper test of being outside exercising in cold heavy rain which I was thinking could be pretty unpleasant with the oxaliplatin sensitivity effect. Didn’t have any impact in the end but think probably more because the oxaliplatin effect has dissipated pretty much entirely now...so will have to hold the proper test until early next cycle.

cyclingjohnny

Hi @kawa909 you are doing so well, and starting to put lmmense pressure on me for when I start treatment, glad that the cold isn't affecting you, what about your hunger and hair loss, take care cheers John.:x:

kawa909

@cyclingjohnny I think it’s all relative to what your normal levels of exercise are. For me because I do a lot of running I kind of decided from the outset that I was going to try and stick to it as much as possible even on days when I might feel a bit nauseous, fatigued etc.....though knowing that there could be side effects that mean this isn’t possible. I’m basically using running and exercise to get through this whole cancer journey, essentially treating it as though I’ve been out for a few weeks with a running injury and now coming back. I’ve just been lucky so far not to have many side effects. I think all your cycling should stand you in good stead. No hair loss for me and my appetite is normal and probably helped by the exercise.

cyclingjohnny

Great to know @kawa909 I think the way you are doing this is great, thanks so much for info, take care cheers John.:x: