Treatment

Dear Elaine-65,

My husband also recieved the same diagnosis end of May 2019.

We have started with the chemo protocol which is FLOT and have just finished round 4. This week they are doing some tests to see how the tumor responded to this treatment and we will know the next steps next week. Typically it would be surgery plus 4 more rounds of chemo depending on surgery pathology. This is what we have been told, but the oncologist also says that he keeps RT as an option as well.

Like all others suggest try to keep a positive attitude overall, and trust that this latest FLOT protocol is the best out there for now. (for what we have discovered this is the latest accepted protocal in the western world)

As for the chemo, I suppose everyone reacts differently. My husband did not suffer much for the first rounds, but this last one gave him a lot of fatigue and some other minor issues.

If you have any particular questions, I am happy to help in anyway I can.

Thank you for your reply. I was diagnosed 10th May had the usual scans etc a couple of hot spots showed up on pet scan so they had to be investigated thankfully nothing sinister. I am anxious about the treatment and surgery but need to focus on the chemo first. Not having much problems eating etc though i am getting more indigestion. Just keep thinking as days going by and have still not started treatment this tumour is getting bigger. Your husband must have got started chemo very quick and i do hope he is doing well and is fit enough for the next step. X

Hi Elaine - have you got an Oncology Nurse you can talk to? 

I had T3 N2 M0 - diagnoised April 2019 - chemo was 4 FLOT - surgery to follow - then 4 FLOT - only finished 3 FLOT debating 4th as 3 FLOT worked very well.

Take a notebook and wrote down all the answers to any questions you have. Do not feel shy about asking any questions you have -  it is your body. Support throughout the process is helpful. 

Everyone will react differently to the chemo but there are standard side effects if you read the Macmillan literature - so pains in your arms might be one, painkillers are useful on the 2nd day of FLOT but ask your nurse. 

I changed my diet to include 100% home made food lots of fresh veg and fruits nuts and copious amounts of seeds sesame chia linseeds pumpkin to keep everything regular - should have done that from the beginning - stoped dairy and red meat - made lots of soups as the steroids used to stop sickness made me very hungry and I was eating constantly -  I drank 2/3 Litres of good water each day (i bought a water distiller) - get as much exercise as you can each day - walking - is your Husband a cook maybe he will do a lot of the cooking for you which may get him talking - my wife does not really want to talk about it either which is frustrating and she does not cook sonI just got on with it. 

Everyone is here to help and the medical staff will also help. So keep asking questions 

Found these sites useful www.yestolife.org - www.flaxfarm.co.uk

Elaine, don't worry about the tumour getting bigger over several days or weeks. It's likely taken years to get to the stage you are at just now. I had no treatment prior to surgery and was in no rush to get under the knife despite having lost a lot of weight. Kind regards Frank.

thank you for your reply, yes i have a GI nurse and she is fantastic always at end of phone and attends the meetings too, my own GP has also been great since diagnosis sometimes just phones to see how i am doing, i have kind of went off red meats just now anyway usually eat fish or chicken just now some fruits i struggle with so have been making smoothies. i have 2 dogs so i do plenty walking will just keep it up when i start chemo. my husband is a better cook than me so will be getting him to make soups for me, thank you so much for this and i hope you everything goes well for you

thank you for your reply, i have just got it into my head that it is growing every day and every day i am having nothing done that this thing will be taking over. i know it is silly but thats whats in my head. I do hope you are doing well after your surgery

When are they going to start your treatment? What is taking time in between your diagnosis and commence of treatment?

morning, after my pet scan a couple of hot spots showed up so had to get them checked which thankfully was nothing sinister there was also a week delay for pet scan as they couldn`t get the radioactive stuff  so there has been a few delays, i see oncologist next tuesday afternoon which will be a clinic appointment so i am hoping that i will get started soon after that, have been getting bit more indigestion etc recently and struggling with some foods but just eat what i can and walking my dogs for decent long walks to keep up my fitness thank goodness i have them as i think i would just sit and dwell on this 

Alright, I hope you can start the treament soonest possible, because once you are in the process then it is a path that you have to follow and you hang on to it.

Try to eat wholesome foods. We consumed a lot of soup with bone marrow, supposed to boost your defenses and what not.