Incurable lung cancer - decisions about treatment

Hi

I was diagnosed with recurrent lung cancer (EGFR exon 20) just before Christmas last year and given a prognosis of 18 months to two years.  The type of cancer I have meant that I had a choice between platinum based chemotherapy (infusion of carboplatin, pemetrexed and pembroluzimab) or an experimental drug mobocertinib, which I think has just been approved by NICE. I chose the chemotherapy option and haven't regretted it.  CT scans have shown that the tumour, which is in both lungs, has remained stable.  A problem I have however, is that I had to be admitted to hospital for five day stays on two occasions - once in March and the other time was ten days ago. The treatment affected my neutrophils, which went down 0.5 this time. I had to have intravenous antibiotics each time. I would prefer to avoid having to go into hospital again if I can help it. By the way, carboplatin was removed from my cocktail after 4 cycles, so I now take a maintenance dose of pemetrexed and pembroluzimab. The oncologist said that the plan is to keep me on this regime either until the cancer spreads, or until I can no longer tolerate the side effects.

After this last bout in hospital I am not sure that I can tolerate the side effect of neutropenia. Well, I can tolerate it, but I don't want to. However, with this illness, difficult choices have to be made. I have an appointment tomorrow with the Oncologist, to discuss the way forward.  I don't know what he will say, but I am imagining the possible options:

1)  Continue with the current treatment regime because it's keeping the tumour stable, and hospital treatment is available if I develop neutropenia again. However, I don't really want more in-patient treatment if I can help it.

2)  Reduce the dosage of the drugs - I would be open to this.

3) Remove one of the drugs - I would also be open to this.

4) Pause the treatment for a while, then resume at the current dosage (I don't want that). Or pause the treatment, then resume at a lower dosage. I would be open to this.

5)  Offer me the new drug Mobocertinib instead of chemo, which NICE has just approved for my particular type of cancer (exon 20).  I understand that this can extend life for say three months longer than chemo.  I'm not too bothered about extending my life, although I don't want to cut it short if I can help it.

6)  Stop treatment altogether and ask my community palliative team to offer me supportive care to keep me as comfortable as possible.

I apologise that this post is a bit boring!  However, it is helping me to think about what I want, and what I can reasonably expect. 

I think I have decided that being as comfortable as possible is more important  to me now that prolonging my life. However,I don't feel ready to stop all anti-cancer treatment and receive just supportive care, as I don't think I will last very long, given my type of cancer.  So I will probably request a reduced dosage of my drugs and/or a pause in treatment.  I understand that this will probably shorten my life, but I'm ok with that as long I feel as well as I can. 

I think that I have made up my mind about the way forward, by writing this post.  However, I would be interested to hear from anyone who wishes to respond to it.  

Thanks, Bluette

 

  • Hi Bluette really glad cannula went in well. Hate it when they start moving it about inside and apologise for hurting. 

    I'll not tell you about problems I've had don't want to put you off, although one time i was having injection in my rear end (im being polite)I have one every 3 months for last 16 years for my Addisons. Anyway nurse pushed needle in and nothing happened so she removed it and checked gave syringe good shake and tried again nothing removed again double checked, i decided one cheek and two holes was enough and asked for other side next time, luckily it worked but i found sitting down rather painful for rest of the day. I think sometimes they try to stick it in the bone. Ouch. 

    Hope you don't have many side effects. 

    Im tidying living room ready for Christmas tree and trimmings. 

    Hope your weekend goes well. 

    Billy 

    Ps  i was born in Ipswich Suffolk, only my father moved to Lincolnshire because of a better job. 

     

     

  • Oh crikey, the problems we can have with needles. Good job we're not needle phobic. The nurses who prepare me for my scans don't have the same sensitivity or skill as the Macmillan ones - and then it a lottery whether they have one go or three with the cannula. An angelic looking boy nurse kept having a try at my last scan and ended up by blaming my veins for being so wiggly, ie old! Thank goodness he finally handed over to the head nurse.

    I feel quite well today - the few days of steroids help. I can't wait to put the Christmas tree up, but like you say it means doing a bit of cleaning first. 

    We had a meal out in Ipswich in Summer after my float in the sea at Walberswick. My uncle and his family moved to Scunthorpe from the family area of Lancashire in the early 70s to get work in the chemical industry over there. 

    I hope the chihuahua didn't make the tree dressing too difficult!

    Regards, Bluette

  • You reminded me of one of my scans with contrast, a portable unit very cold and winter time. 

    Layed down fine although cold radiologist put needle in back of my hand and i waited for sensation of wanting to wee when contrast goes round the body especially the bladder. I hate that feeling. 

    Scan finished he came out looking at my hand took needle out and said you'd better go to AandE i just thought strange looking at my hand it was all swollen up seems contrast went in hand rather than the vein although still had weeing sensation. 2 hour later seen answer a few questions and told go home. 48 hours later swollen hand ok again,.

    It's rather like bone scan they inject radiation in then check you with giger counter to make sure it's going round your body although what they do if it's not beats me. 

    Billy 

    Scunthorpe is about 12 miles from us. 

  • It really is pot luck isn't it, with the cannula. I've got quite good at telling who will be skillful at it and who won't. I often find that the jolly ones who are friendly are cack handed, and the ones who just approach you with the trolley manage it easily. I feel like saying 'Just get the needle in, then we can talk about how well Arsenal are doing or whatever'!  

    After my few days of well being, I've woken up with a sore throat and cough. Covid negative for now. 

    Hope your day is OK,  Bluette

  • Remember your immune system has gone bye bye for now any one with a bug you'll get it especially common cold. Hope things soon improve. 

    My immune system is proped up with steroids and any bugs attacks me I've got to increase steroids and live on lemsip for ages. 

    Im still getting Christmas things up tidy and emptying gazebo ready for bad weather, it's 8°outside here im staying in. No rain yet today. 

    Billy 

  • Hi Billy

    I've done nothing today. The cough seems to be a mild chest infection. The oncologist prescribes me 7 days of antibiotics for every 3 week cycle, as I'm so prone to infections, febrile neutropenia, all that jazz. I've got two social engagements tomorrow, which is unusual for me. I'm on the verge of cancelling them, as I have done so many times this year! 

    Have you got a date yet for your chemo? I also meant to ask you whether you experience any pain in your bones. I'm aware that the bones are a prime site for my cancer to spread to. If you do get pain, is it managed well? Please don't feel obliged to talk about this if you would prefer not to. 

    I haven't got the tree up yet. I've spent all afternoon catching up with Coronation Street!

    Regards, Bluette

  • Hi Bluette I've chemotherapy starting Monday afternoon, I've had a few pains in bones especially spine other month, but age doesn't help especially trapped nerve, with carrying around steel plates and twisting wrong trying to weld hidden corners for over 50 years, but nothing bad .  don't worry anything i can help with .hope it's chest infection and soon goes off. 

    Billy 

     

     

  • Hi Billy

    Good luck with the chemo on Monday. I'm pleased for you that the bone pain isn't too bad, and it gives me hope that should I get it, it will be managed by the nurses. They said that they won't let me be in pain and I must trust them. I had to ask my friend who's a car mechanic what hidden corners were. He demonstrated with two books at right angles. I can see that 50 years of contorting your back to reach the corners would take its toll. 

    I had a more chequered career. I was a secretary in my twenties. It did get a bit dull at times and when someone gave me about 500 documents to photocopy I told him to boil his head. I don't know where that phrase came from! I went back to college and trained to be a secondary school teacher. That was interesting, but the stress of it used to send me to bed with a throbbing artery in my neck. I finally found my dream job as a social worker, working with adults. 

    Anyway, I digress. I won't bother you everyday with posts, but thanks for your support. You are the first person with cancer that I've spoken too. I'll try to join in some of the other threads here and will contact you from time to time if I may.

    Many thanks, Bluette 

  • Thanks for luck hope i don't need it..when i was first diagnosed didn't use Internet didn't know what to do, a friend said try Internet and luckily i found cruk and found friends, people who have cancer and understand the problems and ways to make things easier. 

    Billy