Newbie saying hello plus general query about new treatments

I am currently on the fast track cancer diagnosis pathway and do not have all my results yet. I am interested to hear replies to your questions.

One of my first questions to my specialist nurse was does cost come into play accessing personalised medicine either imposed by the NHS or NICE. 
I have, as I am sure we all have, googled clinical trials and new therapies. As I am not a Medic nor a Statistician much of the data and implications goes over my head. 

However I do find NICE guideline (83) a readable summary of current treatment practiced (last updated in 2023).  And found some reassurance that NICE recommend patients do have access to personalised medicine.

Hi,

My husband has OC not curable and will have cycle 6 of chemo next week, he can't have immunotherapy.

My daughter and I are always trying to find new trials or new treatment coming out but to no avail, % rates are so low for immunotherapy surely there is something else to keep it at bay once chemo ends, my husband wants to fight this but without the right treatment it is a hard battle.

I will await any replies, it's certainly a question that needs to be answered.

Hello New person to this forum , some background from me . I am 60 Year old , Father of two married children with 2 Granddaughters. I am fit and active playing golf and regular attender to my local fitness center.

I have previously had no major health issues . I had Small discomfort in my lower stomach and occasional difficulty with some swallowing only small amounts rarely. However i was referred for an Endoscopy in April , where it was identified i may have a malignant tumour at GOJ junction of Esophagus, Following another Biopsy , a pet scan , CT scan and Laproscopy it was confirmed stage T2/3 . Poss spread to nearby Lymph Nodes but not to other organs.

Started this week on  24th my first of 4 two week cycles of FLOT chemotherapy , then if ok plan to remove all my stomach in Ivor Lewis Procedure , then another 4 cycles of FLOT.

Like i guess many of you now starting the treatment this has become really real and scary , both in terms of effects of chemo, and what is ahead.

Cannot believe i am actually on this forum writing about such things, mentality also trying to come to terms with this as well as physically.

I would like to hear from anyone who is going through similar treatment at what ever stage. Be good to share experiences with people who actually understand , and despite all having good family and friend support network not same , than from people who understand.

Best wishes all and apologies for length of this note , as it was introductory.

Hi Tinker

Reading through your post was a real case of deja vous for me. Diagnosed after just a couple of episodes of dysphagia back at the end of March, just five days prior to my 60th birthday. Previously mega fit gym addict going there 5 times a week for 2 hour sessions.

I've just finished my 4th dose of FLOT and although I breezed (sort of) through the first two ( aside from loss of taste/appetite and a bit of neuropathy) the 3rd dose hit me like the proverbial train! You're completely right about friends and family, they're a great support but haven't a clue about our situation God bless them!

Your tumour is in a similar place and size to mine on diagnosis so I'm wondering why they've said they will remove your whole stomach? I think it's usually a third of both the tummy and the esophagus. Are you having the robotic/keyhole type surgery, if so I can't see how they would remove all of your stomach that way but I may be wrong. I'm sure if I am that someone with more experience will be correcting me soon enough! 

All the Very Best 

Anthony 

Hello Anthony 

Thank you so.much for your swift  response. 

Originally they were going to  remove the osophegus , but following the laproscooy I had the tumour is actually at lower part of the GOJ  valve and more down in the stomach.

They advised it would be an Ivor Lewis procedure. I am assuming they are considering the whole stomach because of suspicion it's spread to Lymph Nodes.

U might want to check why not Ivor Lewis , as I understand it , it's a big operation but quiet common for this .

They def have confirmed this type of  operation minimizes risk of cancer returning , although as always no guarantee.

Also it would not happen until recovery from chemo aprox 6 to 8 weeks after.

Hopefully will know.more after Chemo.at mom 3 days after first cycle feel  lethargic and difc sleeping, weirdly my teeth more sensitive.

I'm glad you have warned me  ur side effects got worse, the further into chemo, as naively I assumed your body got more accustomed.

I guess like you so hard not keeping fit and active, and learning in many ways to rest,  whilst life as we know it still goes on. 

Very surreal like in a dream[nightmare ], and it's.not really happening to me.

Mark

Well I'm here for any support or questions that I'm capable of answering obviously!

My oncologist did warn me that the effects are cumulative so I was expecting it tbh.

Anthony 

Thank you will.keep updated.

Hi Tinker7,

I am a good bit further down the road. Diagnosed in Oct 23 following endoscopy and CT scan, I started my pre-op FLOT in December and, 4 weeks after my 4th cycle, I had my oesophagectomy on 29th Feb. I have now completed my post-op FLOT. What I can tell you is that the recovery time for each FLOT cycle definitely got longer as I went through the process. In fact, I wasn’t really recovered from #3 when I was receiving my #4. The surgery itself is brutal and, although I am now 4 months post-surgery, I feel like I  still have a long way to go to feel fully recovered. I have been told that this can take a year or longer. At the same time, I know that I am lucky to have been given a curative pathway. Not everyone who receives a diagnosis of OG cancer is as fortunate. I wish you good fortune on your journey. You will probably have many questions along the way. I know that I did and I found this forum an excellent place to get answers and support from people who understand because they have been through it. CB

Hi CB

It's that term "brutal" which tbh I'm having major concerns about at the moment. Do I really want to put my body through all of that trauma just to have a reduced quality of life afterwards which will never be the same? I know that I need to have a full and frank discussion with my MDT after my scan results are back because at the moment I'm in absolute turmoil about things. 

Anthony 

Thank you CB, for your reply. I have heard the operation is hard, did you have the full stomach removal, and how long were  you in hospital for.  I heard it's anything from 7 14 days.

If you don't.mind me asking what sort of lifestyle do you have 4 months post op, eg physical activity, eating and drinking.

I agree with your comment at least intention of treatment is curative, so gives you something to hold onto.