Not good news 👎

[LewLew19]

Mums doctor phoned to say the immunotherapy isn’t working anymore. After two really positive scans, one substantial shrink, the second stable, we were hoping our luck would continue. He didn’t mention spread, just that is wasn’t working. Mum doesn’t ask questions!! I have to respect the information she wishes to know, but it leaves us, the family a bit in the dark. She’s starting a new treatment (once every three weeks) but cannot recall the name. I assumed this would be chemo, but she said it was called something different. This will be her third line treatment, can anyone give an idea of what the treatment options might be?

The doctor has prescribed a months worth of steroids to help the cough.

I said to mum, we believed her cough was a side effect of treatment, I can’t imagine she would of put up with the cough for another 18 months, she’s not been sleeping because of it, so I hope the steroids help.

Thanks for any advice x

[LewLew19]

Update, so we have a treatment. It’s docetaxel. I’ve heard things about this treatment, it seems like it could be very harsh. Not sure if anyone has any experience. Thanks

[Denzie in reply to LewLew19]

Keep her well hydrated to protect her kidneys. Take all supplemental medication as directed to avoid nausea. Sorry that’s all I know.

[LewLew19 in reply to Denzie]

Thanks for the helpful tips

[JanetteR57]

Sorry to read of your confusion after your mum's consultation - part of the problem of covid 19 is that without visitors at the consultation, the risk of not hearing or understanding the detail can be high - irrespective of whether your mum asks questions. Does she have a lung nurse? They can be invaluable in answering questions for patients. Docetaxel is regularly used in lung cancer - and some of its effects are less severe than some other agents (supposed to result in lower neutropenia for example). Immunotherapy doesn't work for a lot of patients and due to covid 19, it has been available for patients who ordinarily wouldn't qualify due to their level of PDL1 (a protein signal) so don't worry that she's no longer responding. For those where it does work, it can have really good impact but also can have bad side effects. The main issue with immunotherapy is there is no way of knowing who will respond positively or not as our immune systems can vary so much. The steroids are likely to suppress the cough - but she could also try drinking plenty of warm/hot drinks and sucking cough sweets like 'Halls soothers' which relieves me of my frequent cough symptoms when I have chest infections, following my lung cancer diagnosis in Jan 2011 and surgery to remove half my left lung and 7cm tumour.

Docetaxel (taxotere) is a chemotherapy agent usually used with cisplatin and delivered by infusion (drip)and like all chemotherapy and targeted agents, some people have side effects and others don't. You could always call the Roy Castle lung cancer foundation helpline - ask the nurse service for more information.... and have a look at their online information as it also suggests questions to ask within the various information pieces - look at treatment types.... good luck to you both.

roycastle.org/app/uploads/2...

[LewLew19 in reply to JanetteR57]

Thanks as always for your brilliant advice. COVID has certainly made things a lot harder in many ways. My dad would always be the one to ask questions, take notes and listen during mums appointments. Now it’s just mum and the call the other day was out of the blue so she was shocked/upset, understandably so.

Mum struggles to look on the bright side, I can’t imagine how hard it must be. But the immunotherapy DID work for a period of at least 7 months due to the 2 good scans. One was a significant reduction, the other stable disease.

One thing id really like to know is, are we in a better overall situation now, since starting the immunotherapy. Or is the cough an indication that things are worse. Those are the types of questions that mum simply won’t ask and she is of course the patient.

The doctor didn’t mention spread but said it wasn’t working. When the first line chemo didn’t work before the notes said the tumour became more pronounced and increased in size, albeit slightly. Hopefully his notes will provide more information for us.

I’m really worried about mum losing her hair. She will take that very hard. We’re wondering whether it’s best to see what happens (in case she doesn’t) or to try and prepare her by talking about it which will upset her. So tricky.

Anyways, thanks again x

[JanetteR57 in reply to LewLew19]

It's one of the hardest impacts of covid 19 - and I think an underestimated one where those accompanying the patient can ask questions and also act as support for the patient once home but of course, if they haven't heard the conversation there are likely to be many more questions. This is where the role of a lung cancer nurse is so paramount but know that a lot were redeployed to help with covid. It's good that the immunotherapy worked even for a short time. The cough may be unrelated to the treatment or the cancer - I have frequently had severe coughs that have turned out to be infections or viruses and unrelated to the cancer so they are certainly not an indication that things are worse. The body's cough mechanism is a reflex to rid the body of an irritant in the lungs or airways and could be anything from passing through an allergen area - e.g. pollen, cats, perfume, air conditioning or a reaction to treatment or something else. We all have symptoms and illnesses prior to and can continue to develop other conditions once we're diagnosed. I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me put this in context and stop worrying that everything was related. It's also good that the doctor hasn't mentioned spread - so for now it sounds as if it is stable rather than shrinking the tumour. Clinical notes are often hard to interpret as they're written in clinical language for the doctors and a copy sent to the patients rather than being a letter for the patient with the doctor copied in.... and googling some of the terms used can also send us into panic. Better if there is a phone number on the letter to call and ask to speak to the secretary and ask for a better explanation if you have any questions. Not everyone loses their hair with the different chemo regimes - some experience thinner hair, some hair loss and others no change..... she/you could ask about cold cap during treatment as I understand from friends who had breast cancer (different chemo agents) that it worked for them.. Personally I was willing to undergo whatever it took to still be alive..... I remember women commenting when I first returned to swimming that I was wasting energy and my partner commenting on my weight gain post surgery (lack of activity and steroids due to a chest infection) and my response to all comments was 'I'm glad to be here....' hope she can develop a more positive outlook but agree being prepared can help..... I'm sure others who've had the combination of chemo she's going to be prescribed can comment regarding their hair experiences.

[LewLew19 in reply to JanetteR57]

Thanks! Yes I too hope she can become more positive, but she’s always had a tendency to think the worst and so I guess it’s not a surprise she’s reacted this way.

Today her cough is much better, just 2 days of steroids and she looks and sounds so much better. I hope she can have some rest and calmness now before her treatment starts in 2 weeks. This is certainly a rollercoaster ride we’re on! I’ve never been one for fair ground rides

Many thanks, you’re advice is so helpful to so many.

[JanetteR57 in reply to LewLew19]

so pleased the steroids are doing their thing..... as you say it's a rollercoaster ride not only for the patient but relatives and friends too.... hang on in there.... and try to celebrate the highs particularly if she has a tendency to dwell on the 'lows'.... good luck.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Good to here your mum's cough is much better. You have been given good advice from JanetteR57.

Regarding the Docetaxel treatment, I have attached a link and some information and support regarding chemotherapy in general and also chemotherapy induced induced hair loss.

cancerresearchuk.org/about-...

roycastle.org/app/uploads/2...

nhs.uk/conditions/chemother...

macmillan.org.uk/cancer-inf...

Your mum may also be eligible for a wig should she be interested in obtaining one on the NHS, this link gives information on the criteria for obtaining one.

cancerhaircare.co.uk/visiti...

Please don’t hesitate to contact our helpline if you would like to speak to one of the nurses. Freephone 0800 358 7200(option 2).We are available Monday-Thursday 9.00am-5.00pm. Friday 9.00am-4.00pm.

Sending best wishes to your mum for her chemotherapy treatment.

All the support team at the Ask the nurse service.