Desperately trying to find an option for 5th line treatment for my husband after a year of progression free survival on folfiri. Her2+, CPS score of 12, not sure if we know mismatch repair status. Stage 4 at diagnosed with liver metastases and regional lymph involvement
Initially treated with Cisplatin, capecitabine and trastusamab - stopped when they thought it wasn’t working but they later realised gap between scan and starting treatment could’ve accounted for growth.
second line was paclitaxal
thirdly Refmal clinical trial - the liver mets loved this and grew 50% in 6 weeks.
now just over a year on fortnightly folfiri but on last scan liver mets growing, some by almost 50%, new ones appeared and regional lymph nodes also increasing in size once again.
what’s next??? Please help!! We’re 2 years and 3 months from initial stage 4 diagnoses but not ready to give up yet.
anyone else been in this position?
more than 2 previous lines of treatment seem to bar him from a lot of the current trials.
can anyone help, please!
Dear Lizzie
I am so sorry to read this after such a remarkable PFS response. I have been in your position when my husband had metastatic disease it is one of absolute desperation.
Making sure we have asked all the questions we could have done of those managing the treatment of our loved ones is something we strive to do. You obviously have done so, so far.
I am assuming you have also asked your oncologist about clinical trials? Have you asked about compassionate use and expanded access to oncology therapies, for example where there may be a benefit but the patient is not eligible for inclusion in a trial.
To search for CTs yourself, you may already know of the website clinicaltrials.gov? If not, it is another way of assuring ourselves we have asked every question we could.
My kind wishes to you both x
I know FLOT is only normally used if they think it's possible for a curative outcome but is it worth asking if it's viable for your husband? Even if it can shrink things for a while to give more time? I don't know, my dad had/has adenocarcinoma and they gave him 4 rounds of FLOT and prior to his surgery they couldn't find any trace of the original tumor via a endoscopy and the biopsies they carried out.
FLOT as far as I am aware, is a first line (and gold standard) treatment ie not a 5th line option. It is a very aggressive chemotherapy regimen and some patients (including myself) are deemed unfit to tolerate it as it has a high toxicity profile,
Hi Lizzie,
I am sorry to read that the liver mets have again started to grow, have you been told the size of these mets or how many there are?
Dal was taken off a trial due to pneumonitis and has been off treatment since May, this has given the lesions in his liver time to grow, but he has been offered targeted radiotherapy directly onto these lesions as the other tumours are behaving a present. I wonder if it is worth your husband discussing radiotherapy with his oncologist....I am not sure if the movement in the lymph nodes of your husband will make it possible, but it could be worth an ask.
Best of luck
Lowe'
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