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Incurable lung cancer - decisions about treatment

22 Nov 2022 08:01

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

 

Incurable lung cancer - decisions about treatment

22 Nov 2022 09:16 in response to Bluette

Hi Bluette. 

Alot of people come on forum and write ideas down to figure out best options or just to have a good rant and let off steam. 

We all have the option of a long life but not a good one,  or a short but pleasant one. 

I myself was on meds that made me wonder what day it was and what i was doing but at least it shrunk my cancer. Oncologist cut my dose down and i felt better for a while, so cut dose again to1/4 strength felt good again for couple of weeks, so stopped meds entirely felt good for months but cancer started pains so radiotherapy and soon chemotherapy. Sometimes think is it worth it. 

I made a promise to my wife to be before she'd marry me (she's nearly 14 years older than me)that I'd look after her when she got old (51 years together this dec 1st. ),she's got alzimers and parkinsons and other things. I'm her carer im sticking to my promise. 

Oh I've prostate cancer gone to lymph node's pelvis spine ribs and a lung. Palative care since 2016. 

Hope others will join you soon people who understand what cancer is like. And treatment options. 

Billy 

Incurable lung cancer - decisions about treatment

22 Nov 2022 10:33 in response to Billygoatt

Hi Billy

Thanks for replying.  I was very moved by your story.  That's a lovely photo of you and your wife, and I was impressed by your vow to your wife and your determination to stick to it, regardless of your health challenges.

I can imagine that you did have a wonderful few months without treatment. My mum always used to say to me when I was young 'at least you've got your health' whenever I was whingeing about something. How true that is. I didn't appreciate it at the time! But as you say the cancer does tend to come back and often it spreads.  Your post has reminded me that the bones are a site which lung cancer often spreads to; as is the brain.  Maybe I should try to accept the inconvenience of going into hospital once in a while, by carrying on with the current treatment regime, if it minimises the risk of the cancer spreading. This is something I can discuss with the oncologist tomorrow.  

Thanks again for your post. It has helped me clarify my own thoughts. Plus, the caring relationship you have with your wife, despite your own problems, is very uplifting. 

Thanks, Bluette

Incurable lung cancer - decisions about treatment

22 Nov 2022 11:21 in response to Bluette

Hi just a thought, if you go to beginning of your message at the blue bar open search and enter what information you want you should have details of others with same problem.  Also if you touch name or picture it should open details of that person, warning some don't put details on. 

Hope things go ok tomorrow and you remember all your questions (hopefully you wrote things down. ).

Billy 

Incurable lung cancer - decisions about treatment

22 Nov 2022 14:26 in response to Billygoatt

Thanks very much Billy. 

Incurable lung cancer - decisions about treatment

24 Nov 2022 08:42 in response to Bluette

Hope things went ok yesterday. You remembered everything you wanted to say and got your answers. 

Billy 

Incurable lung cancer - decisions about treatment

24 Nov 2022 18:03 in response to Billygoatt

Hi BiIly

I managed to see the oncologist and a specialist lung nurse yesterday.  They disagreed amongst themselves - sometimes I think the nurses know more than the doctors, but I am happy with what the doctor proposed. The nurse wanted to keep the dosage as it is, with the addition of a white blood cell stimulator every cycle, to try and protect my neutrophils..  The doctor preferred to reduce the dose of one of my drugs, Pemetrexed, by 25%.  I am happy with that, though would have liked to try the nurse's suggestion.  Anyway, I'm splitting hairs. They were kind and respectful and came up with a plan I am ok with.  They also answered questions about treatment and supportive care further down the line. 

I asked if it was inevitable that my cancer would spread. I guess I have been lured into a false sense of security because the scans have showed a stable tumour since treatment began. However, it only means stable for now.  The doctor looked a bit sheepish, but he said yes, it would spread. I knew that really.  So, the plan is to have chemo tomorrow at the reduced dose. 

Thanks very much for your enquiry, I really appreciate it.

Regards, Bluette

Incurable lung cancer - decisions about treatment

24 Nov 2022 20:11 in response to Bluette

Evening Bluette, glad you got things sorted with oncologist and dr. 

Im under 2 specialists and quite a few times one doesn't talk to other to figure out best options and then i get problems with treatment. 

Im surprised others haven't been on this string yet. Though things can be quiet sometimes  .hope others join soon. 

Ps my cancer is coming back for third time, first time was over 4 years after diagnosis 2nd time 18 months later,this time about a year, different treatment each time, getting short of options. 

Im still positive and sure, and determined to keep looking after my wife.despite her being a very bossy female. 

Billy 

Incurable lung cancer - decisions about treatment

25 Nov 2022 10:06 in response to Billygoatt

Hi Billy

Your comment about looking after your bossy female made me laugh. These things can keep us going in a funny sort of way. I just live with my friend and two cats. The cats run rings round us and I want to keep going for as long as I can, so that I can minister to their every whim! Fortunately my friend will be able to look after them when my time comes. It was also amusing to see the female nurse keep interrupting the doctor on Wednesday. He was a registrar and put up with it. I guess when he's a consultant she won't dare to question him. I did think she was right though. At least these two were in the same room and on the same team. It must be difficult for you having two different specialists. They can be blinkered, don't communicate and the patient suffers. 

So far my cancer has only come back once, within 6 months of what the surgeon thought would be curative surgery. But I have been told it will spread, whatever treatment I have. At least I'm not coughing with this treatment. 

Hope you have as good a day as possible. At least the sun is shining, here in London anyway.

Regards, Bluette

 

Incurable lung cancer - decisions about treatment

25 Nov 2022 14:42 in response to Bluette

Glad your cough has gone off. 

Not sure about London, we live in North Lincolnshire plenty of open spaces and good air, although plenty of wind and rain, and hot sunshine now and again 

We've a spoilt chihuahua, she eats drinks and sleeps 12 years old very bossy when she wants something so I've two females around me day and Night both snore. 

Hope things keep going well. 

Billy 

 

 

Incurable lung cancer - decisions about treatment

26 Nov 2022 08:28 in response to Billygoatt

Hi Billy

The chemo went ok yesterday.  The cannula went in first time - often difficult as my veins are tiny.  I love the North sea coast. I managed to have some lovely days out this summer in North Essex and Suffolk. Lincolnshire was a bit too far. As I get so breathless these days, I couldn't swim in the sea, but enjoyed floating and sunbathing.  Those memories have helped me during these dark November days.  

I hope your chemo is ok when you start it. Well, we both know it sometimes needs tinkering with, but I hope that on balance it helps.  

Someone else's snoring can be really disturbing during a sleepless night.  However, I have surprised myself by waking up to hear my own gentle snoring at times, and hearing one of the cats at it too. Such is life!

Thanks for your supportive messages over the last few days.

Many regards, Bluette

 

Incurable lung cancer - decisions about treatment

26 Nov 2022 10:09 in response to 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. 

 

 

Incurable lung cancer - decisions about treatment

27 Nov 2022 09:23 in response to Billygoatt

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

Incurable lung cancer - decisions about treatment

27 Nov 2022 10:19 in response to 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. 

Incurable lung cancer - decisions about treatment

28 Nov 2022 11:59 in response to Billygoatt

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