Medium to long term effects of FLOT chemo regime

Hi Rf2k18 and a very warm welcome to the online community

I haven't had FLOT chemotherapy but have found this information from Macmillan for you. If it doesn't cover what you're looking for you could post your question in ask a nurse and one of the specialist nurses will respond within 2 working days.

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Hi there!  

Thank you for this. I have spoken to the clinical nurse specialist at the hospital where I got my chemo who has stated that since FLOT is a fairly new regime that the information is not really out there and every one reacts differently. Not one size fits all. I was just wanting to find out how long it would take to get rid of my chemo brain. 

Time will tell.

Kind regards 

RF

Hi,

My husband is scheduled for the 7th cycle in a week. It sure is a very strong protocol.

Between the 5th and 6th cycles he ended up with 2 blood clots; one on the neck and the other on armpit are. They told us that chemo cockteyl made his blood thicker. Now he will be on blood thinners for next 6 months.

He also says that chemo has affected his thought process.

I hope that he doesnt get any permanent damage.

How do you feel since your last dose? And why couldnt they give you the last dose?

best,

Hi, I have just had my 3rd round of FLOT and it has been, so far, mostly ok. First couple of days after each treatment is tough, just really grotty feeling.  I’ve got a clot in my arm/armpit that I’m taking Heparin (fragmin) injections for.  Other than tiredness and reactions to cold from oxaliplatin i’ve not suffered with anything too badly. My concentration is lacking a bit at times but I put that down to the tiredness?

Hi Andy

Glad to hear you are getting through it! It’s really tough especially that first week.  I have heard of chemo brain! When it’s difficult to concentrate.  I read Nick’s Cancer Diary and think he experienced that.  He had FLOT

https://nickscancerdiary.wordpress.com

I found reading this reassuring and very helpful.

You are nearly at the end of the chemo and you will pick up once it finishes!

Take care!

Hi Oyita!  

I hope all goes well with your husband chemo treatment.

I couldn't get the last chemo treatment because I became bed bound and the nausea I suffered throughout my whole treatment came to ahead. For chemo sessions 5-7, I was given chemo as an inpatient - the hospital was trying new medicines to alleviate the nausea - it didn't work. 

Throughout my journey - anything that could go wrong with me went wrong. I had sepsis,  a blood clot in my PICC line etc etc but the nausea never went.  I had various treatments for nausea - being on a syringe driver to eating 3 or 4 different sickness meds just to stay out of hospital. This was December 2018. So after getting chemo no 7 in January 19, my family and I decided to call it a day but basically the decision was out of our hands as I was not fit enough for the last chemo session. At that time I didn't know that if you were bed bound you couldn't get chemo - I found this out couple of months later.

After stopping chemo,  I had planned on going back to work - March 2019 to be precise - I haven't managed that yet. I hadn't reckoned it being such a slow recovery process.

I am getting there - I still suffer from nausea. 

I believe I am suffering from pyloric stenosis . Every 3 months, I am getting botox put in the pyloric sphincter and I am now eating metocloperamide to help me. 

I had hoped to have got rid of the chemo brain but it hasn't happened yet hence I was wanting to find out the medium to long term effects of this chemo regime. I can't remember what I have said, I can't remember words that I can picture in my brain etc etc etc. 

I will get there!  Positive thoughts - I have managed the journey so far.

Kind regards,

RF 

Hi Jacquiw10,

Thank you the link to Nick's cancer journey - I will have a wee read at this.

Kind regards,

RF 

Hi Rf2k18,

I finished my treatment which included 2 cycles of 4 treatments of FLOT in November 2018. I am now in remission. FLOT was only authorised for use in the NHS in November 2017. It has been used in other parts of the world for at least 7 years. The late approval for the NHS was due to the cytotoxicity of the FLOT cocktail. However it has better results (statistically) than the previous chemo treatment for oesophageal cancer ECX. But due to FLOT's cytotoxicity only 40% of patients complete the 8 treatments. I was one of the 40%. I had many side effects from FLOT chemo some of which I still have and some I am receiving treatment for. i'm not going to list the medical problems FLOT has caused me because they may not be statistically relevant, and everyone reacts to chemotherapy differently. Suffice it to say FLOT saved my life, but is a dangerous cocktail which is why part of the treatment has to be done in hospital with a doctor available in case we have a life threatening side effects. 

The bottom line is with surgery it offers us the best opportunity for life, but it is not without it's risks. 

Hi Anon613,

Well done in completing all 8 chemo regimes. That is a major achievement!

What type of surgery did you get? Total or partial oesophagectomy? Sorry for all the questions.

You completed your chemo in November 18 while I completed my 7th chemo regime in January 19. So you are the first person who has been ahead of me in treatment with FLOT.

I also do understand that statistics isn't quite relevant as we are all our own unique individuals but be It would be great to know what medical problems you are dealing with after completing your chemo.

RF

Dear RF,

I cannot imagine what you have been through, thank you for your feedback and good wishes. 

Luckly my husband has not yet had any severe responds to the treatment he has been recieving apart from the blood clot. Our oncologist did take some precautions for the neuropatic effects such as tingling feed by adding on a B vit complex pill and a pill called thioctacid everyday before breakfast after cycle 5. I must say that with this additional support during the 6th cycle he did not suffer as much from the pins and needles in his feet and throat.

Chemo brain is an issue, he lacks concentrationa and energry these days but I hope that in the long term this will go away. He also feels quite depressed the first 8 days or so after the chemo. Between days 12 to 15 he is at his best...

I did ask our oncologist about the long term affects of this protocol after cycle 4, however he was reluctant to say anyhing. He says that such information predisposes the patient to think about the worst out come so he is not very forthcoming if that makes sense.

I am thinking may be he has not suffered some much because he is still quite young. I have also heard that blood type 0 handled the chemo better.. but it is just heresay. How old were you when you recieved your diagnosis?

If I may ask, when did you get your operation? and how far out was your operation from your last chemo?

Regards,

oyita