TrishLamb

Sorry to read about your dad's recent diagnosis, my husband had adenocarcinoma which he had his full left lung removed, but unfortunately it spread to his brain. We had a fabulous consultant Mr Woolley (Liverpool/NWales) he was very good at explaining what was going to happen and expectations of treatments. Although I can't think of any questions for you, what I can say is write everything done that you want to ask, if you don't want to ask or find things difficult, give the consultant the list and ask him to write things down or the specialist nurse practitioner. As there is sometimes so much information fired at you, it can be difficult to absorb. Spend time with them, don't feel rushed because they will give you the time you need. I hope all goes well with his appointment.

Carlatoddnuttall in reply to TrishLamb

I'm sorry to hear about your husband and thank you so much for taking the time to reply to my post. That is very good advice and I will definitely do that because I know there will be things I'll forget to ask and I also don't want to ask so much at the time in case my dad feels swamped with extra information that he doesn't want all at once. Thank you x

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Bow-19

Roy Castle has a booklet about targeted therapies on the website and the ones available are being developed and changing all of the time.

When I had a biopsy taken from the tumour in my lung they tested for different mutations which took a few weeks. They then told me that I had an ALK mutation. I was initially treated with general chemotherapy and then with targeted chemotherapy. I still take a targeted chemotherapy tablet twice a day at 9am and 9pm.

It is worth asking if your dads tumour has been tested for mutations and if it hasn't asking why they have chosen not to test for them. They test for several mutations the common ones that I am aware of are EGFR, ALK, ROS1. You could ask about these.

My partner comes into all of my appointments with me and I take in a written list of questions and write the answers down too. We often have different opinions after the appointment about what has been said.

Wishing you all the best Xx

Carlatoddnuttall in reply to Bow-19

Thank you! I believe they are testing for mutations and hopefully that's what we may find out more about tomorrow. I've made a note of those you've mentioned and have the Roy Castle info up on my computer now so will be feeling better prepared tomorrow. It just feels better to have something practical to focus on. Thank you for taking time to reply and share your experience. What you said about having different opinions after appointments and what has been said I can definitely relate to. I felt like that after the first when he was diagnosed. I will definitely be taking in a written list.

Best wishes to you and your partner, I hope you're doing okay?

Carla x

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Bow-19 in reply to Carlatoddnuttall

Good luck for tomorrow. Yes, I am doing well thanks. I was stage 4 when I was diagnosed with the ALK mutation in November 2013 and I have had a few ups and downs along the way but am keeping well 😀xX

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Carlatoddnuttall in reply to Bow-19

I'm pleased to hear that. Thank you for your well wishes. Just finished typing up three pages of questions x

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jillygirl

Like Bow says The roy castle website is very useful for information .

If you click on the about on the headings at the top , next to followers, it takes you to their website.

Carlatoddnuttall in reply to jillygirl

Thank you - I have it up now!

Best wishes,

Carla x

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RoyCastleHelplinePartner

Dear Carla,

If you click the link roycastle.org/how-we-help/l...

You will find information about specific questions to ask your consultant.

Wirral Lung cancer Support groups

CONTACT

Lorraine Morgan

Kay Kennedy

Anita Gillen

0151 604 7482

who will advise you.

Kind regards,

All the team at Roy Castle Helpline

Carlatoddnuttall

So I went with my Mum and Dad to find out more about prognosis and treatment yesterday and I am still so very angry today.

We were all built up to hear whatever they were going to tell us and we got there waited and waited, then finally were seen by a registrar. The registrar then went on to ask my Dad all the same questions as the week before and then told us they didn't have any results to share with us so it had been a bit of a wasted journey really.

That said, she proceeded, in very blunt terms tell my dad his lung cancer was advanced (we knew this) and that he would likely start chemotherapy. She then went on and listed all the horrid side effects of chemo. Now forgive me but I have spent the last few weeks reading everything I can to understand what might be ahead of us and I know it won't be pleasant. I'm certainly not a professional but I could have delivered that information in a much more understanding way than she did. How are you meant to stay positive and not fear cancer and your treatment if you are spoken to like she spoke to us. To sit and watch her talk to my Dad like that was awful and when we came away he said he too felt frustrated and that he 'felt like just a piece of meat to them'. Every time I think of him saying this I get a mixture of sad and furious.

Despite not having the results of the cell mutation tests she recommended chemotherapy – Permetrexed and Sisplatin. The reason given that my Dad is fit and healthy. She explained that should this show a 50% expression of PD1-L1 then immunotherapy can be offered as a first-line treatment. Very little discussion was given on other potential targeted therapies and we all felt like we were being pushed to just start on chemo now without having all the results back. It was very frustrating. She also didn't address the questions we were asking and came across as very patronising. I had to ask her the same question four times and in the end I gave up.

So Monday, Dad goes back for his pre-assessment, then on Thursday we go back and hopefully this time get more information.

I am so sorry to rant on, I know this is just the beginning of a long slog but I had to get it out.

x

JeanneLe in reply to Carlatoddnuttall

You rant all you want if it makes you feel better. Where else can you do it without upsetting friends or family. People on this site are tough and know exactly how you feel.

It doesn't sound like a good experience with the doc. I would have wanted the consultant as my first port of call. Mine is very good but I can't say she always is as I would say her bedside manner is not great. She upset me a lot after the first 2 chemos by saying if its not working we will stop it. She just forgot to say we will try another one. I just assumed I would die soon. But she is very focused on the cancer and doesn't like to get sidetracked too much. It is now 2 year since my diagnosis in Dec 2014 and probably a year past my sell by date. You should have been allocated a lung nurse and they are very good you can always phone and have a chat. Try speaking to the secretary and she should be able to give you numbers to contact.

I personally was on Premetrexed and cisplatin. It is a day at the hospital so go prepared with books headphones anything to keep you occupied. I think the cisplatin is very toxic so they also pump lots of fluid into you. They weigh on arrival and departure and log all intake of fluid and also output. I got a water tablet to take home but the suggestion was not to take till I was home in case it worked really well. I was a bit poorly on the first one. I felt quite sick and weak and couldn't eat. I took to my bed for a couple of days. The next one they changed the anti sickness drugs and they worked better. The day after I was normally OK, tired but felt alright. Then I would be very tired for about 3/4/5 days and then started picking up again. I lost a bit of weight but I felt I had got away lightly with the side effects.

I had 4 sessions and it did shrink the tumour but mine is also in the pleura fluid so uncurable. It is still only in the one lung. I have had another type since then.

Rant when you need to its a very safe place to moan about anything.

Jeanne

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Carlatoddnuttall in reply to JeanneLe

Thank you for your email and advice. I'm very pleased to hear you are doing well, 'past your sell by date'!

Thankfully, Dad received a very supportive phone call from both the specialist nurse and oncologist on the Friday which has put him in better spirits. Unfortunately, there wasn't enough DNA in the biopsy so he has to have another bronchoscopy. We should know more in about three weeks. Until then, just trying to enjoy our time and find out as much as possible about potential treatment options. It's helpful to know your experience on Permetrexed/ cisplatin should this be the recommended route. Thank you.

Best wishes,

Carla x

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rebelina

Carla,

Sorry to hear about your dad's diagnosis and your not so useful visit to the hospital.

You should get the ALK and EGFR tests back before your dad starts on cisplatin and pemetrexed chemo, as there are first line TKIs available for those mutations. However, my brother tolerated cisplatin and pem very well - few side effects apart from fatigue. They do have to tell you about the side effects, but not everyone gets them of course. My brother had a good response to the systemic chemo, including in the brain, and it was two years before he had progression. He is now on an ALK inhibitor as he had granular positivity for an ALK re-arrangement.

You should have a lung cancer nurse specialist you can contact at the hospital, and sometimes this is the best way to get information about test results etc. Can you find out who that is and make contact?

My brother and I also found his first oncologist very negative about the ALK and EGFR testing, I guess because they don't see these mutations that often, not in his hospital at any rate.

Never worry about having a moan! We all need one from time to time, and there's lots of understanding here!

- Rebecca

rebelina in reply to rebelina

I would also recommend the Bonnie J. Addario Lung Cancer Foundation Patient Handbook, “Navigating Lung Cancer, 360 Degrees of Hope,”. While it has a US slant it contains a wealth of information. See: lungcancerfoundation.org/pa...

Also the Inspire Lung Cancer Survivors Forum is full of excellent information and lots of very helpful people, including many from the UK. See:

inspire.com/groups/american...

- Rebecca

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Carlatoddnuttall

Hi, Rebecca,

Thank you very much for your advice and support. My Dad is having another biopsy done to check for mutations, as they didn't get enough DNA last time. hence the delay in the results. We don't expect to be much further on with our options until end the end of February. We're trying to just get on with this limbo and make the most of the time before treatment starts, when we don't know how dad will be feeling. It's all a bit surreal.

I've logged onto Inspire - thank you.

I hope your brother continues to do well on his treatment.

Best wishes,

Carla x