Adjuvant FLOT chemo

[telford-hiker]

Hi,8 weeks post IL esophagectomy, after a meeting with oncology this morning,I have been advised to take the second round of chemo,as 7 of the 67 lymph nodes were positive for cancer..And it would reduce the risk of it returning by 20%...Had anybody else been down this road ,and how was it..tia...Marc

[kiddy]

Hi there, a lot of us do further post op chemo. It is a mop up of anything that may break off. The chemo is harder second time round. Although I did have different chemo I didn’t make all of the chemo.

Best Wishes

Debbie

[telford-hiker in reply to kiddy]

Thanks..I’m doing same regime ..as you say as a mop up..not looking forward to it..but if it increases chances ,it had got to be done ..and my beard had just grown back 🙄😂

[Mark4]

Yes of course you must do this it will be fine do make sure you self isolate as much as you can as you will probably become neutropenic ( low white blood cell ) and be prone to infection . I had two infections during round 2 and hospitalised in antibiotics

I had the second round post op 6 years ago think of it as doing you a lot of good ( it is )and you will cope with it

Well done on the IL you’ve got the toughest bit out of the way you far over halfway through the treatment

Covid infection precautions will help you ironically

Best wishes

[telford-hiker in reply to Mark4]

Thank you 🙏🏻 that’s a good way of looking at it.I am walking 3 miles per day to build strength,both physically and mentally,did you suffer hair loss again on round 2 ..

[Mark4 in reply to telford-hiker]

Fitness really important as you will have realised from the op

I did not lose any hair through any of this but am quite bald anyway

[telford-hiker in reply to Mark4]

Yeah fitness has made a difference..I shave my head anyway..it was just my beard which ,has grown back 😩 never mind grow again ,touch wood

[FKM100]

Hi Marc, I'm in the process of having adjuvant FLOT chemo at the moment. I'm supposed to have 4 cycles, which I gather is pretty standard. I've had 3 so far.

I had two full cycles of FLOT, then, with the 3rd cycle, my oncologist decided to drop the Oxaliplatin, because my neuropathy is starting to become fairly pronounced. I had the other drugs though, and I am due to have what I expect to be the 4th and final cycle (minus the Oxaliplatin) next week.

As for my experience, I am finding that it the adjuvant chemo is hitting me quite a bit harder than the neoadjuvant. I basically sailed through the latter with minimal side-effects, but I'm much more conscious of them now. Apart from the neuropathy, I get neutropenia, for which I am given Filgrastim to inject (I don't know whether this would apply to you too, because I am not in the UK). So far, I've been able to avoid picking up any nasty infections, although the risk is always there. But Filgrastim itself is a bit of a challenge, although I've tolerated it well so far.

As Kiddy has said, the adjuvant chemo is really a form of insurance, to kill off anything that might still be floating around in your system. Some people have adjuvant radiotherapy instead; some have a combination of radio and chemo, but I gather that some sort of adjuvant therapy is pretty standard, especially where the cancer has spread to lymph nodes (as mine had too).

Incidentally, my hair hasn't fallen out -- yet -- although my scalp has been feeling a bit tender these last few days. So I'm waiting to see what happens, although with my luck it'll probably fall out after the very last cycle!

[telford-hiker in reply to FKM100]

Hey,sounds like you’ve done exceptionally well..👏🏻 my oncology have told me they are dropping strength to 80% and every 3 weeks..as that’s what happened towards end of first cycle..All I can do is give it my best shot..my beard has just grown back ..so fingers crossed..I wish you well ,and look forward to reading you have finally completed this nasty journey..stay safe

[FKM100 in reply to telford-hiker]

Thank you - and best of luck with yours. I must say I think it's very sensible of your oncologists to decrease your dosage and increase the intervals at this stage, before you run into any difficulties - I think you will find it far more doable. So hang in there … you're over the worst and the end is closer than you think. I'll keep my fingers crossed for your beard - along with my hair (and eyebrows!).

[telford-hiker in reply to FKM100]

😂 👍🏻 here’s to the hairy future 😂

[Tink49 in reply to FKM100]

Hi my husband has just had 2nd cycle of post op flot, he has 7 days of filgrastim injections to start 24 hrs after his chemo pump is removed. Pre op he had no issues, but post op he's been having awful back pain within a hour of having them. He's now having pain relief before and having them just before he goes to bed and no back ache.

[telford-hiker in reply to Tink49]

Ok,that’s handy to know,thank you..do you mean paracetamol or something stronger prescribed..

[DavidP]

Hi Marc, I received ECX before and after the op (2012) but a recent clinical trial showed FLOT used similarly was far superior to ECX in this setting - the results are impressive. The use of ECX in the UK was based on the Magic trial but it was not able to differentiate whether or not post-op therapy contributed to the overall effects due to low numbers of patients. The FLOT use in the UK is based on the FLOT4 trial and I'd like to know whether they analysed this aspect in this trial - probably not and the trial abstract is only available free to view (not the full trial). Overall serious side effects and hospitalisations were similar for ECX and FLOT. I found the post-op chemo much harder than the pre-op and opted not to go with the final cycle as I was exhausted and had experienced neutropenia, needed a dose reduction but most importantly my histopathology results were positive (good resection margins and no lymph node involvement). Having said that, personally, I'd go with the advice and take the chemo but I'm not a physician and this is my personal view. Here's a link to the summary of the Flot4 trial in the Lancet (you'll need to cut and paste into your browser) thelancet.com/journaols/lan...

Good luck

David

[telford-hiker in reply to DavidP]

🙏🏻 thanks ,don’t really understand the technical side, I get the jist of it tho..I have already signed up for adjuvant chemo..and also been told if I can get to 3 cycles,may have to skip the last 1...As trials are based on the 4 cycles..see how it goes ,and thank you

[DavidP]

Commentary on the trial has suggested that patients should receive good nutritional support and if haematological toxicities arise that they receive GCSF (a drug that helps stimulate white blood cell production) to help get them through the full 4 cycles and therefore derive possible full benefit. Something to bear in mind as you discuss progress with your oncologist as GSCF is expensive and its use may vary in the UK.

[telford-hiker in reply to DavidP]

Hi,I am usually given these I think as a course of under the skin injections that I administer myself..I did on first course,so supposedly the same again,but I will check ,thank you 🙏🏻

[FKM100]

Hi - the GCSF is what I referred to above as Filgrastim (a synthetic version). If you've used it before, you'll probably be given it again. I know that some people have trouble tolerating it (it has side effects of its own), but if you can tolerate it, it certainly counteracts the neutropenia.

[telford-hiker in reply to FKM100]

Yeah I sort of remember it making me a bit achy boned ..but worth it for the benefits

[Notknowmuch]

Hi telford-hiker, wow well done 8 weeks post IL op and walking 3 miles per day. Hope your recovery journey is going well and no problems with your meal portions and eating.

My husband ( 2 1/2 months post IL op) gets shortness of breath and coughs while pacing slowly and when he talks. It isn’t helping either that we are in winter now so it is too cold for my husband to walk outdoors and we are in lockdown now too (Victoria - Aus).

Hope you are able to tolerate the upcoming chemo and all the best for an excellent outcome!

Cheers,

Kelly

[telford-hiker in reply to Notknowmuch]

Hi,still get out of breath,going up a slight hill..but walking was my pastime before.meal portions are still small,and struggle a little after meals,with sort of foam coming up..A chap I talk to from Yorkshire on a similar site ..is 4 years post op now,and leads a near normal life..He turned up at the weekend to a nearby hotel, to walk out local hill and get his picture taken ,for a Facebook site I do about for mentioned hill..so popped over to meet him and his lovely wife..He had inspired me,and answered a lot of questions..But the main thing is time..stay fit and healthy.and things will get better ..

[Tink49]

My husband had his Ivor Lewis surgery 8 weeks ago, he had pre op flot which he tolerated well, hair started coming out after 2nd session. Surgery went well home on day 8, we've been walking up to 3 miles most days but some days he just sleeps. He's just had 2nd post op flot, he had 2 nodes out of 20 they removed compromised, he was T4a n1 M0, histology restaged at T3, n1, mo. There's a R0 on his notes too, didn't know what that meant but think it's clear margins maybe? 🤔

Post op is making him very tired, he's sleeping alot for 1st week after chemo, 2nd week he's a bit more with it and can get out walking. He's always been a runner and fit & healthy till this! He's 48.

He didn't want more chemo, he hates having the picc line in as it's a constant reminder of what's going on, but I feel happier that he's having the 'mop up' chemo.

Hope all goes well for you.

[telford-hiker in reply to Tink49]

Hi ..no idea what RO means ..but sounds like he’s doing well..I think fitness is a big part ..just come back from a 4 mile..but not looking forward to more chemo..Having said that your story has inspired me,as I hear so many stories of how bad adjuvant chemo can be ..I wish you well,and thank you 🙏🏻

[DavidP in reply to telford-hiker]

Yes R0 means that there was good resection margins and no evidence of cancer between the the resection line and the tumour.

[Mickd31]

Hi Telford hiker.

I had 4 lots of flot chemo before the op then 4 lots after, I finished the last of the 4 at the end of March this year and hated doing each session. Fortunately my wife works in Eye theaters and my daughter is a deputy sister in ITU and with those pair pushing me on i made it. It was a lot harder than the first time but I knew what to expect and made sure I took the anti sickness and imodium when needed. It was just a case of taking each session as it comes. I've been back at work since the middle of June and getting fitter all the time. I must admit I wasn't expecting to have a second lot after the op but I'm pleased I did. I've not got much hair so if I did loose it I didn't notice. Hope all goes well for you.

All the best. Mick

[telford-hiker in reply to Mickd31]

Thank you..I will do it..although not looking forward to it either..the last round hopefully..glad to hear your doing well ,stay safe

[Guitarhero]

Good luck,it’s the best chance to stop this horrible disease returning. Like others on here,most husband has ecx about 6 weeks post Ivor Lewis surgery March 2018. He was able to tolerate the full dose of the first 2 cycles but had to have the last cycle reduced to 60 as he was so poorly but he did it with lots of re assurance from me....

Best of luck,you’ve had the worst,the operation....

[telford-hiker in reply to Guitarhero]

I finished my first lot on 80% and every 3 weeks ,so my oncologist said we’ll do the same ..so see how it goes ..thank you and all the best ..

[telford-hiker]

Hi..just had my 2nd cycle yesterday of FLOT.,on the usual steroids dexamethasone..I do know that all this affects swallowing,but everything seems to be a struggle to swallow sort of a scratchy feel,and feels like coming back up for a while..anybody else found this ..tia