Recent Diagnosis

Hi Lofty73 and welcome to the online community. I am so sorry to hear about your diagnoses. That must of come as such a shock to you.  I am glad you have reached out here to the lung group , as no one understands more than us what you are going through.

I am very pleased to read that your back pain and eye sight have shown signs of improving already.  It is a really good sign that the Alectinib is working.  When you have a cancer diagnoses it is hard to try and get back to some normality, and enjoy life as you did before cancer. We have a new normal, and sometimes it takes a while to adjust to that. Everything has happened so quickly for you, Im not surprised you dont feel like smiling.  It is still very much early days for you. I think in time, once you know the treatment is working, you will start to feel better about things. 

There are a few members here who are on immunotherapy only. Hopefully someone will come along and share their story with you. 

Take care

Hi Chelle

Thanks for your message. It's good to have somewhere to talk to people and see their experiences without having to rely on my family too much. 

I will have a look around teh community and pick up a few tips there.

Lofty

Hi Lofty,

I am sorry to hear of your diagnosis, I understand how much of a shock it can be both for yourself and your family and friends. Any change in life is hard until the new normal is established, however a cancer diagnosis feels so unfair especially when you have been fit and had a healthy lifestyle. I am in my fifth year following my diagnosis of Stage 4 Lung Cancer (NSCLC) in 2016, and am currently on Osimertinib, and have had several changes in treatment during that time. The first few months i found it hard to deal with life as did those around me. My new normal emerged once a treatment plan was agreed and treatment started. Improvements in your eye sight and pain is a good sign that the Alectinib is doing it's job, as Chelle says. That may give you some reassurance that the drugs are making sufficient difference to take each day as it comes and seeing some way to deal with such a big change in your life, identity and emotions. 

I've only just joined the group but happy to share/support if it help

Hi Agnieska

Thank you so much for your message. It makes me feel so much better to hear from somebody in a similar situation to me. The doctor's had told me that if the treatment went well I could expect to live a mostly normal life for some years. It's great to hear from somebody who has done exactly that.

If you have any useful information that would be great and I would really appreciate anything that you are willing to share.

Lofty

His Lofty,

Mostly normal, is now my normal. I'd been working full time until my first operation (prior to diagnosis) and was determined to return to work, even after diagnosis the intention was to return to work. However after 12 months or so I accepted the situation and took medical retirement. It was the best decision I made. I am able to spend quality time with friends and family and have some of those holidays I  always intended to do. Retirement was the best decision I made. My husband was also fortunate in being in a group who were offered early retirement, so we have spent time together.

My best advice is to think about what you would like to do -  bucket list for some people, mine was to travel as much as possible to favourite places in the UK and to Spain, to learn Spanish (it's never too late) and spend time with friends who have been an amazing support. I find it a great distraction, diversion to get away from my negative thoughts to live my life, and not be live in fear of the future. Not easy every day but most days I'm smiling.

In terms of physical issues, seek advice from anyone about side effects. Sometime things improve unexpectedly, others you learn to live with them. 

And yes, the words it's not fair and why me are there, but now I also experience the why not me. But that took time.

Hope some of that helps.  Ask any questions and I or someone will help. The group is very good at that.

That's great advice Agnieska Thank you

Hi Lofty,

Sorry to read about your diagnosis it really resonated with me, so thought you might like a view from someone very similar just 6 months further down the line as it were.
Like you I’m a never smoker, an avid runner, cyclist & skier, I was diagnosed completely out of the blue last June 2020 aged 46 and like you Stage IV with mets to my bones, liver & brain, the first month was a mixture of shock, disbelief, grief and feeling sorry for my wife, children & myself. Thankfully this has largely passed now and I’m in a generally good place. It’s sort of difficult to explain but when I got my diagnosis I sort of thought, right that’s it Stage IV lung cancer I’m seriously ill and I sort of felt like I was really ill, even though physically I actually felt no different to the day before finding out, I think a lot of it was psychological as it were, with one of the biggest issues being having no reference point re. Lung cancer other than something at the back of my mind that told me it’s often caught late and the stats aren’t good particularly compared to some of the other more publicised cancers as it were. Since being diagnosed I’ve sought to educate myself as much as possible about the disease and treatment options, choosing to ignore any stats as by their nature they are pretty much out of date, it really is amazing the advances that have been made in lung cancer treatment over the last 5-10 yrs and personally I see no reason for that to stop, hoping that each new development is just a little ahead of me.
Like Agnieska says it’s about adjusting to the new normal as it were, accepting things are different but making the most of it, rightly or wrongly I’ve not changed too much and for want of a better description I’ve chosen not to be ill (makes sense to me) additionally physically so far I’ve been very lucky as I have had no symptoms other than with hindsight a sore lower back I’d been treating with Ibuprofen which went a couple of weeks after starting my treatment, incidentally like Agnieska I’m also on Osimertinib (a targeted therapy for the EGFR+ mutation).
Initially because I have mets in 4 vertebrae and I’m also on blood thinners I was worried about doing anything active and that really got me down, after about a month I asked my oncologist about the possibility of running again, his response was just take it easy and see how it goes, so I almost took a couch to 5k approach, run/walk/run etc, it was hard as I was constantly worried about hurting myself but I’m so glad I did as now I’m back to getting out 3 times a week like before and whilst maybe I’m slower and don’t push myself as much as I used to I take great satisfaction that I am doing it knowing that this will not always be the case, not sure if it might be an option for you to ask your oncologist about easing yourself back in to running, or if that’s not possibly maybe something else like cycling to get out and get the endorphins going etc?
To date I have found this forum useful to read and pick up information and other peoples experiences etc, and have gained some good re-assurance from this, I have also joined a specific EGFR+ UK Charity Facebook group for my mutation which by it’s nature is more focused and has a lot of bang up to date info and specifics around treatment pathways etc which I find reassuring to know that I’m up to date, given you are on Alectinib I’m guessing you have the ALK+ mutation? in which case there is a UK ALK Positive Charity FB group which it may also be worth you looking to join as I’d imagine it will be similar in terms of specifics relating to your mutation and may provide some additional focused insight.

All the best

Steve

Hi Steve

Thanks for your message and for all of the advice. I went through exactly the same thought process as you did of stage IV lung cancer, undetected with multiple metastases if really bad news. I've done a little research online but I am planning to do some more. You are correct that I have the ALK+ mutation so I will definitely check out that FB Group.

I have a meeting with my oncologist tomorrow so will ask about running then. My goal is to participate in an online race I do every year for spinal cord research, even if I only manage to run a mile and then to hopefully go from there.A Snowboarding trip net year when we are allowed to travel again is a longer-term aspiration.

I wasn't sure about joining the community but so far the support, advice and people here have been fantastic.

Thank you again for your message

Mark

Hi Mark,

Sorry, I've not been on here for a while, hope things are going ok for you and you're settling in to your treatment etc.

All the best

Steve

Hi Steve

Thanks for your message. To be fair, I haven't been here much either. The ALK+ group has lots of information and support so I have been using them more.

I meant to come an post an update here. I had results from my 2 month MRI and CT scans plus blood tests and ECG results. The news was better than I could have imagined. All blood work and heart function is normal, my met's have shrunk and the bone in my pelvis is starting to heal. Best of all the main tumor has shrunk from 8 to 3 cm. I have more Alectinib and very few side effects so it is all good.

I hope that you are also doing well

Mark