Bad reaction to treatment. Need your help and advice please.

Hi Cat222 welcome to the group, but sorry you find yourself here. I am so sorry to hear you had such a bad reaction to the chemotherapy. Neutropenic sepsis is awful, but I am sorry to hear that treatment has been stopped because of it.  I have radiotherapy, so I know what the oesophagus burn is like.  I had my scan about 3 months after radiotherapy finished. This is because the radiotherapy continues to work well after the treatment has finished, so they leave it that long before they scan you to get a full picture of the results. 

Hopefully someone else will be along shortly to talk to you about their experience with chemo, but please try not to worry. The oncology team will be doing everything they can for you, this is just a hiccup. Use this next 3 months to recover from all the treatment you have had. 

Take care 

Thank you so much for your reply and positivity  How long did your oesophagus burn last? Mine has been 5 weeks now and still very uncomfortable to eat or drink anything

Thanks

Cat

Hi Cat, it was a good couple of months. It’s like you have a radiation peak, and then you start to come back down the other side. I think my peak was about 6 weeks after treatment had stopped. I was eating ice lolly’s like they were going out of fashion, to try and keep my throat cool. 

The good news is the radiotherapy shrunk my tumour by 50% at the first scan, and there was further shrinkage at the 6 month scan too. X 

Hi CAT222 sorry to hear of your treatment having a severe effect, I have not had chemo so can not give any pointers there, I was lucky suppose as I did not get esophagatis I got mild discomfort of my esophagus, I like you I had 20 sessions of radiotherapy 55Gy's in total, I got Radiation Pnumonitis though, I took Ibuprofen for it, after a month or so thought I better report it, they put me on a steroid called Prednisolone I had such a severe reaction to that after around 6 days usage I thought I would never get better, it was so severe I am lucky I had Ibuprofen to fall back on, I am taking Lansoprazole as well to stop the effects of COX 1 inhibition as Ibuprofen inhibits COX1 and COX2, COX2 prevents or reduces inflammation COX1 protects your digestion tract, so not too good to take Ibuprofen without a Proton Pump Inhibiter such as Lansoprazole, anyway Ibuprofen seems to have aided my recovery from Radiation Pnumonitis, and reduced inflammation of my lungs

I have read that Lansoprazole is sometimes prescribed for Radiation Esophagatis with very good results, so maybe worth having a word with your Oncologist or GP about that, I was diagnosed with T2a N0 MO, I  was not offered an operation found out last time I spoke to my Oncologist that was purely down to Covid lock down, as I was diagnosed in March 2020, as far as your long wait is concerned, I did not have a CT scan until four months after my Radiation treatment finished, which was October 2020 saw my Oncologist in November 2020, my tumour like Chelle had reduced by around 50% so lucky there, I saw my Oncologist again in early March had a chest X-ray it showed no progression, again in July 2020 chest X-ray no change, said he will book me in for a CT Scan in another four months as he said Xrays are not definate enough, so I await that now, so I would not think they have given up on you, this just seems to be the procedure at present.

All the best.

Had my last chest X-ray in July 2021, not July 2020 as I have put, just another four months now for my next CT scan which will probably be in November.

Hi Cat

Sorry you have had these problems.

I  had my first chemo. cisplatin and  prre, forgot how to spell it, well that combo gave me a heart attack, and i had to have six weeks of from treatment, then i was put on a different one, and had six infusions with no problems, o also started on immunotherapy six months on from the chemo and completed two years of this again for me not to many problems, Fast forward had radiotherapy, in june, and really it did not cause to many problems, my scan is 3 months after i finished this,

• My hubby had problems on his oesophagi's  and this is where the cancer was he did six and half weeks of it, had trouble swallowing but was given a thick liquid to drink  before eating and this coated the food pipe for when things went down, it helped him, I would ask about this, he got first one from hospital then we  got it from gp.
• Take Care Ellie x

Thank you Chelle, - hugely encouraging as when I googled it the info I got was I should be totally over the oesophagitis in 2-4 weeks. I can deal with most things if I know what to expect :))

Fingers crossed my tumour shrinks too although I have quite a lot of lymph node involvement in the centre of my chest as well but they zapped that too so keeping positive

Thank you

Cat x

Hi BGJ,

Thank you so much for your reply and so pleased for you that your tumour has reduced by 50%. Maybe if it ever shows signs of further activity they could then offer you an operation to remove it as you have no lymph node involvement. Pneumonitis is supposed to be horrible. Thank goodness you got over that and your reaction to the Prednisolone! 

I am already on Omeprazole for my Oesophagitis and a drug called Antepsin which is supposed to stick to any ulcerated areas in my oesophagus - not sure it's doing much to be fair but will continue taking it until things improve. I could try Ibuprofen but I know that that can also cause gastric irritation so am reluctant. I take Paracetamol syrup which may help minimally but again not really convinced - I also take buckets of gaviscon Lol!

Wishing you all the best with your next scan

Take care

Cat

Thank you so much Ellie for your reply :))

Gosh you have been through it especially with your husband being ill as well. Very difficult for you both. Wishing you all the best for your scan.

Your reply also gives me huge encouragement as I can take your story back to my consultant if he continues to refuse me further treatment if I find I need more after my scan in September. I will also ask for a second opinion if needed. It's just reassuring to know that immunotherapy might be an option if the treatment I have already had hasn't done much.

I will try to find out more about what your husband was given - although I did ask quite a few doctors and they weren't very helpful. I was prescribed Antepsin (Sucralfato) but it's not thick so probably not the same stuff. In America they give you a liquid lignocaine which numbs your oesophagus but sadly I was told this wasn't available in the UK

Thank you again Ellie for your help

Take Care and good luck with it all

Cat x

Hi Cat

Have you asked your GP, the stuff he had was thick like Gaviscon and a light lemon colour take before food,

I would ask him, but i lost him.

Take Car Ellie x