Treatment has stoped working - next steps

[magstherunner]

Hi, Mags here. Well, after 20 months of combination Pemetrexed and Pemulizimab my latest scan shows some further growth in the lymph nodes, although the primary tumour in the lung is fairly static. My oncologist has decided that as the current treatment - i.e. neither the immuno or chemo therapies, are working now they are being discontinued. However, and this may be of interest to many of you, he said that since my initial diagnosis and testing for mutations (which were done on the over 1 litre of fluid taken from my pleura) there have been other mutations uncovered and he wants to test me for those. There are 2 issues for me; 1. the tumours are in a difficult place to take a biopsy and no further fluid has built up to take samples from and 2. it is still a long shot that any of the mutations will be present that can be treated by tablet chemo. So, I am to have a PET scan to determine the exact position on the tumours and if they can be safely accessed for biopsy and if so then a bronchoscopy with ultrasound and a biopsy for screening for any of the newly discovered mutations will be carried out. This has been scheduled for next Thursday, although I haven't yet had an appointment for the PET scan - this will need to be soon as I have to have a COVID test Monday and then self isolate until the bronchoscopy. My lung nurse has also told me that if i am not able to have the biopsy, there is a blood test that needs to be sent to the US and there is some wiggle room for this to be done on the NHS, although I am willing to pay if not. So the treatments etc move on, do they not?!

If the mutations are not there then my next line of treatment is to have a further course of a more brutal chemo with loss of my hair - which is short anyway! Not keen on this as I haven't exactly enjoyed the side effects of the previous chemo - but - hey ho.

I thought I'd post this so that other people can ask their team about these new developments.

Anyone got any advice re the bronchoscopy??

Be careful out there. Mags x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Mags,

I am sorry that there has been growth in your lymph nodes and it is disappointing to hear that they have decided to stop the immunotherapy treatment. Your oncologist seems to be very proactive and its going to be a busy week or two of further investigations please keep us informed of what treatment regime is offered to you. As you have said there are always new developments and treatments are constantly changing there are progressively more and more treatment options becoming available.

Kind regards

Roy Castle Support Team

[JanetteR57]

Mags - your post reminds me why I became involved in lung cancer research and advocacy - having met a clinical nurse specialist with stage iv lung cancer back in Oct 2012 told she had less than 6 months but who managed to get on a new treatment for her EGFR mutation on a clinical trial - when that stopped working another one had come along and she was able to have that at a different hospital - she survived 4 years 4 months which at the time was unusual - those treatments are now in their 3rd generation and so many more have come along in the interim as well as vastly increased knowledge from research about the different drivers and mutations in various lung cancer types. Another fellow advocate said he didn't want to know how long he might live as he hoped that as he'd been told that when one treatment stopped working, there would be others which was the case for him and like the nurse, he lived almost 5 years on these new treatments. Many of these are now in standard care but there are others available in clinical trials or sometimes compassionate use so never ever give up.... good luck with whatever you new course of action is.... I've had 5 bronchoscopies - one under general anaesthetic (rigid bronchoscopy) and the others under light sedation with a spray at the back of the throat - all but one were fine - but one with a different staff member prompted a lot of coughing during and afterwards but they still managed to obtain bronchial washings due to a lot of inflammation in my airways.... far fewer have been undertaken during the pandemic but in my local district general hospital they're done in the endoscopy suite as a day case and just told you can't drive yourself home and need somebody to come and meet you to accompany you home.... most hospitals have their own patient leaflet explaining the procedure that is usually sent out with the appointment letter...if you're on blood thinners, you usually have to stop them beforehand so do check if you don't have an explanatory leaflet. good luck.

[magstherunner in reply to JanetteR57]

Thanks Jeanette for your support and for the great interest you have taken re lung cancer research and the resultant useful and informative assistance this affords to fellows who experience this disease. I have had a lot of information from my team but it doesn't beat peer experience. I am still pretty fit and healthy. Still walk/jogging a couple of times a week, although getting slower in the cold weather. Brrr! Feel tired at times but managing to still enjoy my cooking and eating well and keeping my weight up. Very sore shoulder at times and taking paracetamol at night which works well. Best of luck to all and I'll keep you up to date. Mx

[JanetteR57]

sounds good - keep up the activity - I was told it was the best thing I could do to aid recovery... take care.

[sassassas]

Hi Mags

thank you for taking time to post your news. Its good to hear you're still well and making the most of your busy life and I do so hope you have a drug-able mutation.

Like Janette, my husband has had a couple of bronchoscopies and they've been straightforward both times. He also had a pretty intense chemo regime which quickly took his hair (all back now!) but it was tolerable and did the job.

I posted on here a few weeks ago about a zoom conference held by the American Cancer Research Institute about immunotherapy research. I would really recommend watching it if you have a spare hour. We both thought it was fantastic - it was a brilliant researcher who explained things very clearly (there 1st few minutes were a bit full on but bear with it!). But most of all, he was so excited and hopeful about what the near future will bring. The link is here for the recording if you are interested cancerresearch.org/events/w...

Best wishes for next week. Sarah x

[Red58]

Sorry hear this mags few people I have treatment with same happen it stop working it heart breaking and scarey we go through all chemo immunotherapy n do well then bang it all goes pear shaped I pray you get through this mags it a horrid disease thinkin of you xxxx

[magstherunner]

Hi Margaret. I'm trying to be positive that they might identify a mutation that can be targeted. I'll face the next step when it arises. I'm so lucky to have the very best husband in the world and we are in this together. It is what it is, there's nothing I can do about it. Going to Cornwall in a couple of weeks so looking forward to that. Hope you are coping well with the treatment 🙂. Keep us up to date with how you are doing. Love. Mags xx