So Diagnosis was five years ago had chemo which was brutal and unsuccessful and the Ivor Lewis Procedure in October 2017, attempted mop up chemo which again was brutal so stopped, later my research showed chemo is given in a lactose solution ......I am severely lactose intolerant. Despite not having the mop up chemo I appeared to make a really good recovery defying their odds. Then I coughed up a small mass in April 2021 tests and scans showed a tumour in my left lower lobe of my lung , they warned at the time of I L surgery that this could happen so wasn't a huge shock but still a shock.
Initially the team decided to give me a blast of radiation to stabilise the tumour, and care was classed as palliative, but after some discussion and a second opinion scans showed no trace of cancer anywhere else in my body. So they gave me a chance ten intensive radiotherapy treatments to halt the tumours growth, some reduced dose chemo because it still had to have lactose in it so I could tolerate the awful side effects. Because I managed that and passed the fitness tests I was scanned then assessed by the thoracic team who decided they would operate and take out the damaged lung. That surgery was in May last year and successful. So my team scan me every three months and I receive a single round of maintenance chemo every three weeks the name we use is Heseptin but the proper name is tranzumatab I have been having this now for over year. Does anyone have any experience of this, how long do they treat you, does anyone have any long term side effects or side effects
Thank you in anticipation of your responses
Hi Tiddles,
I truly apologies that this post has been left unanswered, I hope you are doing ok at the momemt.
With regards to the Trastuzumab, as I am sure you already know, this is a targeted therapy, and also goes by the other name Herceptin as you have stated, this has in my opinion been my husbands lifesaver.
After having 5 rounds of FLOT, he was put on the Trastuzumab which he has ever two weeks and has been doing so since around August 2020, an overall he has very little in the way of side effects... He says that there are aches and pains at times, more so during the weekend of treatment but he also occasionally has nose bleeds on the alternate week. If anything I feel there has been some positives from the use of this treatment as intially when on the stronger FLOT treatment his hair and skin where failing, his finger nails started to die and he aged really quickly. (he had been diagnosed terminal and the treatment certainly showed how vulnerable he was) then the herceptin was given and it has been a miracle, originally advised that he had a 4-12 month life expectancy with treatment.. we are now 21 months in.
I hope that you continue to do well on the treatment you are receiving, it seems you have done great after the IL surgery and have been successful with the lung cancer, i hope that from here onwards things only improve for you.
Lowe'
