Oesophageal Cancer Diagnosis - Please read my Bio for more info

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Hey Wave 43year old chilled out family man with wife and 3 kids. My name’s Brett and my wife posts on the Oesophageal cancer forum as DanKate.

Will try to post and respond as much as I can to support/offer advice/share experiences, etc…

  • Hey Hollywood,

    As you say, our timescales are very close. You’re a little ahead of me as I’m due my third FLOT cycle on Wednesday. I’m 59, reasonably fit & healthy, non-smoker, enjoy a drink but definitely not a heavy drinker, married with three kids, three stepkids and three grandchildren (the most recent born just before Christmas). Sounds like my tumour size and location are pretty identical to yours too. Might be interesting to compare chemo side effects. So far, mine have been fingertip sensitivity to cold temperatures (toes are fine), extreme fatigue (about Day 3-Day7 then slowly improving), some stomach cramps and diarrhoea. Generally I’m on the upward slope by Day 9. 

  • Lovely to be introduced and hear about your family mate. Congratulations on the newborn.

    Hope everyone is okay. We have 3 kids 13, 10 and 3. Christmas fell on a few of my good days post round 1 of treatment so stuffed my face for 3 days solid Joy 

    We are pretty much identical in symptoms too. I’ll give as good a run down from memory as I can.

    I have sensitivity to cold in finger tips only for days 1 - 5 then improves each time so far. I also get shooting pains in my whole lower jaw if I eat anything sour or sweet which is strange. It’s just the first taste but then gets used to the taste and is fine. Nothing in toes either. Taste and smell goes haywire for a few days then and pretty much live off toast.

    I was very lucky in that after the first round I had a great reaction in my swallowing. Before treatment I could barely get half a paracetamol down, had to eat small portions, chew lots and in really small bites. After, pretty much back to normal eating.

    Day 3 - 7 pretty much written off with lots of bed rest then improvement after then. I have had constant sick feeling in back of throat, watery mouth and some heaving but never sick from day 1 throughout. Started on Domperidone which did nothing, moved on to Ondansetron which was better but now on Levonepromazine for anti sickness and it is amazing.

    Bowel wise I had a bit of dodgy belly before treatment which led to 8 days of diarrhoea after day 1 of treatment round 1. Was in AOS on IV line with Saline going in to rehydrate but since round 2 been fine. If anything a little constipated here and there. Probably down to pain meds and anti sick. Hospital gave me Laxido drinks.

    I had a mouthwash given to me from hospital as mouth was a bit sore.

    I find by the end of the filgrastim injections around day 8 I feel better and can do light exercise and eat ready for next round.

    Filgrastim gave me intense bone pain in hips, pelvis, upper legs and lower back. I have zomopth 10mg twice a day if needed but it didn’t do enough. Clinical team advised to stagger 1000mg of paracetamol over the course of every 4 - 6 hours as well and it worked perfect so now have that under control too.

    My clinical nurse said don’t try and play the hero and just say if you have any symptoms. As a result have had adjustments in meds and treatment that have helped. They reduced my dose to 80% but said that it will have no detrimental effect as my weight and body composition is correct for the revised dose due to some weight loss.

    Just to try and help summarise what worked for me so far…

    Change anti sick if current meds really not working.

    Pain meds staggered in smaller amounts over longer periods worked better for me.

    A good plan for eating if you have diarrhoea is to try the BRAT diet for a couple of days if you can swallow and tolerate it. You basically eat Banana, Rice, Apple and Toast for 2 days. It’s really old school but paired with some Imodium from the hospital for a couple of days sorted me right out.

    Hope some of this helps and best of luck as you go through this. I’ll try to post as regularly as I can too.

    Love to you and family Blush

  • Hi Holywood,

    Nice to hear back from you. My “kids “ are a little older. 31, 29, 25, 24, 20 and 17. Like you, my first cycle of chemo on 13th December made a big difference to my swallowing ability and I was able to enjoy my Christmas dinner - the best present of all and the first mesl in ages I had sat down to without trepidation.
    Yes, I also get some loss of taste. Interesting about your filgrastim injections. You get 8 days of these? What’s their purpose? To boost white blood cell production? I get a single syringe to inject into my stomach on Day 3 for that purpose but that’s it. Can’t remember the name of the medication but I looked up the cost and it’s over £700. I did experience one night of severe lower back pain 3 days later during Cycle 1 but have been ok this time around. Hair has started falling out so my wife took the dog clippers to me and I’m now sporting a buzz cut - which she says she likes. We’re going out for a curry tomorrow night. First dinner out since all this kicked off and I’m really looking forward to it. Best wishes to you and the family. Keep in touch…

  • Was also my first decent meal at Christmas and much needed Raised hands 

    I had a buzz cut too. Took my beard trimmer thing and gave it a 1 all over. It’s been 2 weeks and there’s some fluff but loads of bald patches so will take it down again over the weekend. My little one helped out with doing it which was fun. He then went to take off his hair when I wasn’t looking but managed to grab them off him before he really got any haha

    We waited until staging and treatment was confirmed and told the kids it was cancer. Thought it better to be upfront. We just told them that dad’s strong, will be having treatment and doctors will help me get better over the next year. They get a little worried here and there but we try to protect them and just keep reassuring that I’m doing okay.

    You’re right the injections I have are to boost white blood cells and help your immune system rebuild a little. They said it draws the white blood cells from your bone marrow which is why some people get the bone pain around the areas I said. I do the filgrastim injections for five days from day 4 - 8 on each cycle. I have a sharps box and do them at home myself around the lower abdomen area. The needle is thin and goes in easy so have no pain or issues with that part.

    Enjoy tomorrow’s meal. Have a nice Madras and a garlic naan for me mate. Best wishes to you and family. Will keep in touch as will  

  • Just got an appointment for my follow-up PET scan on 15th Feb. Final chemo session is 31st Jan. Have you had a date for yours yet? I presume that, provided results are good, the next step will be a date for surgery…

  • Thanks for the update as it’s a good prompt for me. Will chase mine up this week.

    Great news they have it all planned already. My last chemo is a couple of days ahead of you but no PET scan booked yet. 

    If positive result, should be operation after that. It will be down to staging of PET scan my consultant said. Could be extra round of chemo in some cases. Fingers crossed for positive news.

    I had a wait of 3 or 4 weeks from scans to first chemo treatment so a bit anxious in case something happened during the wait. Will keep positive thoughts.

    Date of surgery can be within 6 weeks so will come round quick. Give a few weeks to get in shape and put some pounds on for the big op.