Hi, I'm new here and hoping for some advice

Hi,

I'm so sorry to hear of your devastating news. I know it must be frightening but keep hold of the fact that you bet this horrible disease once before, I'm sure you can do it again! 

Everyone on here is lovely and will hopefully give you some reassurance and love. Your never alone remember that. 

What kinds of food are you already eating? Rice puddings, custards, soups, cheese and crackers, wotsits, yoghurts, jelly, mash potatoes, try and add full fat stuff to your foods like jams and cream cheese and swap to full fat milk. This will help with your calories. Have you tried fortisips yet? 

I hope this helps a bit for you.

Sending love and hugs- Kayleigh x

Hi

Could they not offer Pembro again? …….I am currently having pembro infusions every 6 weeks for oesophageal cancer and so far it seems to be working to reduce the tumour.

Hi

I'm sorry you've had this bad news especially after you've already been through so much. As Kayleigh says, you've beaten it once, you can do it again. 

I had chemotherapy and radiotherapy for oesophageal cancer in 2021. No operation. 4 cisplatin by IV, capecitabine chemo tablets (dissolved) at home twice a day for 12 weeks, and 25 radiotherapy which started on the same day as the third cisplatin IV. I had a stomach feeding tube fitted because the tumour had blocked my oesophagus completely so I was nil by mouth. Had 6 Fortisip a day which I syringed into the tube (I didn't have the pump feed). It was gruelling but I got through it and I'm 2.5 years clear. I was 53 at the time. 

See what the lung test and PET scan show and talk to your oncologist and team. Macmillan nurses were lovely and great support to me. 

As for food, Kayleigh has covered everything. When I did start nibbling at food again I had cravings for cheesy savoury biscuits (tuc, Ritz) they crumble easily and if eaten slowly are ok to swallow. 

Keep in touch, let us know how you're doing. 

Take care,

Amanda

Thank you for your encouraging words.  Trouble is, I feel I've had my share of miracles, and have  been living on borrowed time since 2018.  And yes, I eat loads of milk puddings, and have some sachets the hospital gave me, which I mix with full fat milk, but although it's getting increasingly difficult to swallow, I am still managing to eat soups and things like mashed potato and minced  meat with lots of sauce or gravy., but sometimes the food just won't go down and I gag, which I find really hard to cope with, and then get upset, which I'm sure doesn't help.  But it's hard to relax your throat when you know it's going to hurtl

I would be so grateful if I could have Pembro again, as it was so successful getting rid of my lung and bone cancer, and I had very few side effects.  But the oncologist didn't seem to think I would be eligible for it.  I guess it depends a lot on whether the current cancer is likely to be treatable with Pembro? I know it doesn't work for all cancers.

Thank you Amanda for your encouragement.  It's good to know that you went through all the horrible side effects of the treatment, but I'm not sure I'm going to be given the option if the doctors decide I'm not well enough.  I'm 71 and know I'm really not very well, apart from the throat problems.  I think all I can do at the moment is try to get a bit healthier, by forcing myself to take more exercise, whether I feel like it or not.  But it's good to have the support here, so thank you.

Hi,

my husband had a total response to stage 4 bladder cancer with Pembro about 5 years ago. We were hoping for the same when he was diagnosed with oesophageal cancer 8 months ago, but as this tumours doesn't have the PD-L1 marker, it's not possible. However, we ere told that even if he had the biomarker, he's not allowed immunotherapy more than once. No explanation given as to why. NHS resources?

I don't know if it's down to NHS resources, but I do know the pembro treatment is very expensive,and there are strict guidelines as to who can have it.  My oncologist mentioned that it is usually only offered when the cancer is inoperable, which my lung cancer was, but told me that my new cancer is only inoperable because I am not  fit enough to undergo surgery, not because it's in a position that makes it inoperable, which could make a huge difference.  I do wonder how they can tell you your husband can't have immunotherapy more than once, and not explain why.

Hi RootsJ

Have you had any further updates on treatment? 

I would have thought that there would be something that can be offered to you. 

Lowe'

I had a lung function test this week, which  should help the oncologist assess whether I'm fit enough to undergo the full chemo/radiotherapy.  Seeing the oncologist next week, so should find out then.  I know that if I'm not considered well enough they will probably offer me palliative radiotherapy, which of course doesn't aim to cure.  I am finding the waiting quite hard to cope with.