Losing my determination

[MacColl]

I was diagnosed with NSCLC in mid 2019 after extensive tests at a hospital with a specialist dept for diagnosis and forward treatment. One primary tumour in each lung and 2 lymph. They passed me over to the Oncology dept once diagnosis was complete.

First was Pembrolizumab which gave a tangible improvement within a few weeks of the first monthly infusion ...sadly, mid way through the second, I developed hepatitis and was in hospital for 8 days. Two weeks later, I got pneumonia and had a further 2 weeks in hospital. Further treatment with that drug wasn't possible.

After a considerable rest period in early 2020, and when treatment was due to recommence with chemotherapy, we decided to go down the private treatment route as Covid had arrived causing some treatment to be suspended.

Sadly I first spent some days in a ward following what turned out to be a seizure. I then changed to my current private consultant. His initial tests showed that it had traveled to my brain (hence the seizure), so he arranged a course of chemotherapy followed by Gamma Knife Surgery at a specialist hospital. Once recovered from that, I had a course of 14 radiotherapy treatments to the four issues in my lungs.

Scans after that were encouraging but in early 2021 a small lesion was found in my brain during a routine check and quickly dealt with again by the Gamma Knife dept in another city.

Unfortunately, although we'd been out walking our dog in the evening, I had another seizure in late June during the night and woke up in hospital where I was put on high dose steroids of 8 tablets per day - only just got down to a low maintenance dose of 2 mg and 1 mg on alternate days. I was asleep most of the time for many weeks, and do still have some days when I'm very sleepy with weak arms and legs. Still got some issues of after effects but much better once free of the high dose of Dexamethasone steroid. Wish I could use Prednisolone now instead. My worry is that my next appointment with this consultant will not be until late January with no actual date/time set yet. My last brain scan in June was a perfusion one but I don't know what conclusion they came to, but a small new lung lesion was found and quickly treat in September. I've had my follow up appointment for that radiotherapy consultant delayed twice with the next appointment by phone due in a week. Hopefully that will not be cancelled but I'd have preferred an appointment in person. (Wondering how they can see any improvement as I've had no lung scan since treatment.)

I know that such extensive treatment and reaction to the seizures etc take their toll, but it's most unlike me to sleep during the day, plus I'm self employed and can't do any work which I miss enormously. The way I describe it is that my brain etc is now working pretty well but my body refuses to co-operate as efficiently as I need it to. I've been wondering if I should ask about some home physio perhaps. I have some awful distension due to the steroids I think, and do hope it starts to go before too long ....quite debilitating. Think the shortness of breath may be after effects too, but don't expect a full recovery anyway.

I've seen encouraging information on this site and hope to be one of the people who get a decent amount of time thanks to treatment etc. and am willing to try any other treatment available to my consultant. My main question is will this current stage/situation perhaps pass? - I don't seem able to find any reliable information. One site that I found (brainstrust.org.uk) had information in the patients section that I stopped reading as I want to stay positive, and that site was somewhat alarming. Not sure if you have any knowledge of it.

When I first met my oncologist I told him that I wanted to focus on the speck of light at the end of the tunnel rather than any other possibly negative prognosis while there was still any light. He replied that it was a great attitude and he would be pleased to have me as a patient. Not sure whether to ask him about that again now!

[Seaspray298]

Been on this journey since 2014 and currently doing a second set of SBRT on a hilar lymph node and adrenal gland. Brain MRI in Dec and hoping I have a clear head (have had Gamma Knife 3 times). Just wanted to let you know you are not alone. You may want to check out Inspire.com and sign up. It is much more active and you will get many replies. Try to keep up your strength and walking and having some physical therapy certainly would help. I am not one to lay in bed much, but I am fighting the fatigue and pain now so I give myself permission to rest every few hours. Hang in there!

[Winnie-unavailable in reply to Seaspray298]

God Bless you!!

[Betty68]

Hi sounding so like me. Diagnosed 12 months ago nsclc I’ve had 11 round chemo. Immunotherapy didn’t work for me causing problems with liver. Huge steroids to get back under control. Just had 12 round radiotherapy followed by. Gamma knife I feel like I’m in a washing machine on fast cycle. My emotions are are all over the place. I’m worn out. But I want to be positive and hope radiotherapy and gamma has knocked the cancer for 6!My voice is very weak which is so frustrating. But I’m told this is the height of side effects. So I’ll just have to roll with it. It’s only 10 days since finished radiotherapy and a week since gamma.

Thank you for posting it helps not to be alone. Stay safe and strong xx

[Seaspray298 in reply to Betty68]

Just had to let you know you made me laugh with the description of being in a washing machine on fast cycle! I am more like walking through foam walls in slow motion!! 🤣

[Betty68 in reply to Seaspray298]

Depends on the day. So pleased it made you laugh. I miss just laughing. I feel this cancer has taken me, not sure I recognise who I am. I don’t look like me, bloody steroids. Or feel like me, I know I’m in here. Sending love and hope xx

[Seaspray298 in reply to Betty68]

You're in that body Betty and no one can take that from you. What chemo are you on? I hope it is maintenance, like Alimta at this point. Between that and all the radiation you are doing great and keeping your sense of humor! Try to drink plenty of fluids, take some walks and nap a lot. It will get better from here, I promise!

[Betty68 in reply to Seaspray298]

Back on chemo in 2weeks. Just need to recover from radiotherapy and gamma knife. Pemetrexed and carboplatin then maintainace just pemetrexed x

[Seaspray298 in reply to Betty68]

Glad you got a break....I did both of those for 6 sessions and then did Alimta (Pemetrexed) for about 5-6 months while waiting for immunotherapy to be approved in 2015. Once you get off the Carbo you will feel so much better!!

[Elt79]

You are definitely not alone! I was diagnosed Oct 2018 with stage IV NSCLC with brain and adrenal mets. Pembrolizumab for 2 years and SRS to brain. Was doing well considering and then more brain mets so further SRS and now in my other lung. I think the past 2 years with COVID causing delays to scans and treatment and lack of face to face appointments has taken a huge toll on us all, I know it has on me! I’ve definitely lost my ‘drive’ at times. Try to refocus on that glimmer of light - best of luck going forward! x

[MacColl in reply to Elt79]

So grateful for all the replies - I've been lucky in that when I moved to private treatment I was able to continue treatment whenever needed. Being self employed I'd needed to save for any unforeseen happenings. I even had gamma knife brain 'surgery' twice at a specialist unit in another city.

I am trying to still focus on that glimmer of light but it has faded considerably since last June. I never did get back 'on my feet' properly and took to regaining strength a month ago by getting a wheelchair so that we could both go for a walk, and me sometimes pushing the wheelchair myself for up to 1/4 mile distances. Our dog took to this new way of walks very quickly too. Strengthened my legs, but still had to go for the January scans and they showed that sadly the disease has progressed. Was devastated by that news.

It's now a case of a new treatment (Lumykras) that could potentially give me up to perhaps 8 months if tolerated. If not, probably much less. Oncologist may retry the first immunotherapy drug but in a weaker type ...I'm willing to try if we get to that stage, but need to be in decent health to withstand it. I'm currently staying as positive as I can (as is my husband & family), and am willing to try anything as the alternative is no chance.

It's been a difficult time and it's hard to talk about at times.Should things get worse rapidly (I'm getting odd memory blanks that come and go and walking can be erratic) I've been trying to sort out things to make it easier for the family to deal with my work issues etc, and household stuff that I usually do such as banking, etc.

Hoping I can come back and report an improvement and a decent level of toleration with this drug ...at least if I can tolerate it, something else may crop up that could help by then!

You're all very encouraging - thank you.

[Seaspray298 in reply to MacColl]

MacColl-Let us know how you do on Lumakras! I am KRASG12 and have been offered that. If you have access to Facebook, there are 2 groups on there for KrasKickers and another for Kraskickers g12. Hope this helps and you are doing well.

[MacColl in reply to Seaspray298]

I’ve just seen your post - will take a look at the links you suggest.I have CT & MRI scans on Monday to see if I’m responding well to the treatment.

Must say that the past two weeks has produced more side effects such as daily feelings of nausea and headaches, plus I’m sleeping a lot. I get muscle and joint pain too, but it’s tolerable …..what isn’t so easy is the aggressive flare up of a weepy type of psoriasis covering me in large red swollen patches with scaly patches that weep. There is a very effective drug for it (Acitretin) but I couldn’t continue with it while taking the Lumakras. I’d only been taking Acitretin for a few weeks when I was offered the Lumakras, and told not to take any more Acitretin which was OK as the psoriasis had cleared rapidly with it at that point, plus this new Lumakras drug was far more important to me after everything else had failed.

Something is giving me flu like symptoms but with no temperature. I suspect it’s the Lumakras so we’ll see. The nurses that come to deliver the Lumakras and do frequent blood and health checks do let me know the results - this last week I’ve been told to increase the amount of water I drink.

Consultant has arranged CT &MRI scans on Monday, and no doubt we’ll find out if there’s been much if any improvement. I do suspect there has been a small improvement with breathing, but scans will tell. He usually sees us within a few days of scans.

Makes it so difficult having the awful outbreak of psoriasis to cope with, plus hard to separate symptoms from causes, and not sure which is causing what.

Plus I also have an infection in my left eye which is being treat by a consultant ophthalmic surgeon at the same hospital - that cropped up shortly after the Lumykras treatment began. Treatment does seem to be working well and we see him again in a few weeks.

Just hope the Lumykras is working when I have the scans on Monday! Didn’t sound to be much else to try if it’s not working.

[Seaspray298 in reply to MacColl]

Sending you wishes for good scans! Hope you got on those Facebook sites as all your symptoms have been discussed on there. One day at a time! 😉

[MacColl in reply to Seaspray298]

I didn’t find both sites- only one so far, and was admitted to hospital again on Wednesday. After a whole night of tests and ultrasound heart scans etc, I was taken for a procedure to drain a large amount of fluid from around my heart and kept on cardiology intensive care until Saturday afternoon. I was then transferred to the oncology ward for them to make sure I was well- with luck I’ll get home Sunday or Monday.

Once things settle and we know more I’ll let you know.

Really appreciate all the kind replies.

[Seaspray298 in reply to MacColl]

So sorry to hear you landed in the hospital but hopefully will be recovering at home soon. This journey is not for the weak for sure. I bet getting that fluid removed relieved that pain! I will be thinking of you this week and hoping everyday is a bit easier on you.

[MacColl in reply to Seaspray298]

I did get home once the discomfort from the pericardial effusion treatment settled, but 3 days later both my husband and I developed Covid which we can only have got at the hospital. Being compromised mine lasted 15 days and my new immunotherapy treatment was delayed by a week, beginning April 7th.A week later I’m tired but eating well. Most discomfort is from abdominal distension. I do still feel very short of breath and can’t do much without having to sit down so am hoping the antibiotics help and that the immunotherapy is not only tolerated this time, but gets the chance to improve things.

The weather isn’t amazingly warm but I had a walk and trundle around the garden this afternoon pruning some roses stopping for frequent rests - tired but enjoyed it.

I think I’ll get a few trays of flowering plants for the pots outside the window ….I’ll trust that I get to see them all flower!

Had a nurse visit from the GP today just to check all is well, but didn’t like being referred to as a ‘palliative care’ patient.

I may know it’s terminal but don’t like reminding. I prefer to do all I can to focus on a spot of light ahead - pretty hard in the small hours! - so anything with negative connotations can be disheartening.

Apart from that she was very pleasant.

I’ll get a toxicity check visit next week from the consultants nurse with a view to the second immunotherapy IV, so fingers crossed it’s OK and that I go on to tolerate the second infusion without any serious effects. It’s my only worry at the moment.

[Seaspray298 in reply to MacColl]

You have really being through such hard times but here you are trimming your roses! It is the little things that we can get done that makes us feel a little bit more normal. You get those trays of flowers and plant them. I just put in 82 along the front of my house and have more to do! I have bad adrenal pain so this just made me feel good to get it done despite the pain. Sometimes us warriors have to fight through this to keep living!

Sorry to hear you and your husband got Covid...but you survived and that is all that counts! I have managed to not catch it but it is getting harder here where I live. I try to limit going out still and luckily I live a few streets from the beach/ocean where I feel safe.

I get my 3rd immunotherapy infusion done the end of this week. I hope your labs are all good and you can proceed with your 2nd dose. My side effects are joint and muscle aches which is what I use to have when I was on immunotherapy years ago. Having osteoarthritis doesn't help! Wishes for you to continue to heal and feel better!

[MacColl in reply to Seaspray298]

Thanks for the reply ….happened to check after a night that left me downhearted and negative ….your post has given renewed optimism so thanks!Had a restless night of coughing (probably after effects ofCovid), up to bathroom twice, and general discomfort peppered with those night thoughts that can be so depressing.

Had a grocery delivery early today, and included in it were various vegetables and a piece of topside I’d ordered to slow cook - read your post while setting it off to cook, and in that time I find a new resolve to try and feel more optimistic, so thank you.

I was going to cancel most of my plants and just leave enough for a few pots, but now will let them arrive - hopefully still feeling reasonable when they do come.

Tomorrow the nurse will come to do my toxicity check.

[Red58]

Hi wow you’ve been through it take advice from people on forum in same situation keep focusing on the light good luck x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi,

Your posts suggests that you have certainly been on an emotional rollercoaster. As you can see you will get a lot of support from those in the forum who are(or have been) in similar situations as you.

The best persons to ask specific questions relating to your management are of course your oncologist and the lung cancer nurse specialist (LCNS) involved in your care. Since your next consultant appointment is not till next January you could phone the LCNS who can be contacted in between scheduled hospital visits (you should have been given the contact details of the LCNS). Treatment options are very individualised and she will have access to your health records and you can discuss any treatment related issues you have with her. She can liaise with the oncologist if necessary, about specific concerns you may have.

If you would like to speak to one of the helpline nurses please phone [phone](Option2)[e-mail] They are available from 9.0am-5.00pm Monday to Thursday and 9.00am-4.00pm on Thursdays.

Kind regards,

All the Roy Castle helpline support team.

[MacColl in reply to RoyCastleHelpline]

My LCNS nurse took early retirement during my being laid up last summer. At least we were able to thank him for all his help when out for a walk only the day before I had the seizure! He was extremely good.

I haven't actually had a replacement appointed and haven't asked. Am thinking I may do so - thanks for the nudge. I think I'm at a stage where I may need someone to talk to and ask more question of.

My oncologist and his secretary are very helpful with face to face appointments or email/phone queries, but he's vary much in demand and not always able to spend much time on detail. I did think of asking about a specialist nurse for queries though.

I currently have Sciensus looking after me and my new treatment on home visits - first treatment tomorrow!

I'll definitely contact roycastle.org as suggested - thank you.

[JanetteR57 in reply to MacColl]

Do ask for a LCNS or even ask for referral for counselling - I never met a CNS as my surgery was done at a private hospital on the NHS due to the surgical backlog at the trust as they'd become a bariatric 'beacon' centre for the area squeezing available theatre time for other surgery and due to clinical urgency (it had been 2 months since I'd turned up in A&E and the 'lesion' found)... but follow up was in a district general hospital rather than the surgical centre to think I fell between the cracks so to speak! It was 18 months later or more when the psychological gremlins kicked in - also self employed I'd rushed back into keeping busy/busyness rather than aligning mind/body/thoughts - I'd returned to my swimming but was finding everyday walking especially stairs/incline difficult. I was referred by the CNS when I asked if the hospital had one to counselling provided by the mental health trust to cancer patients and found it invaluable.... I also found reading books helped me - especially 'anti-cancer - a new way of life' by Dr Servan Schreiber and 'cancer is a word not a sentence' by Dr Rob Buckman - both helped me reframe some of it and make me feel I could do some things to feel a little more in charge of the situation. It's also important to recognise that however positive we might be - we need to give ourselves permission to acknowledge what our bodies/spirit have been through and continue to go through and allow ourselves to feel whatever it is - even 'down' moments, hours, days to then appreciate the better times as well... your approach sounds really positive so recognise how far you've come already and be kind to yourself. Sometimes we think we need to be so physically fit but just little and often building up activity can help - when I returned to swimming 3 months post surgery I couldn't even lift my arm up properly for front crawl but swam 20 lengths on my back with arms sculling at the side- but little by little a few more lengths each time and different strokes I was back to my 130 pre surgery lengths by the end of June when I next saw the surgeon in 2011. I went onto swim much further by miles than I ever had previously - and doing something like that where the water was supporting my weight (also gained due to steroids) felt easier than weight bearing but gave the added 'zoning out' mental health benefits.... some resistance/stretching exercises can be done at home using online resources too.... thinking of you and hope you get some further reassurance about your treatment before long... take care

[Babydolltina]

MacColl, I find your positivity infectious. You are one who can beat this demon if you don't give up. I think that you should ask about trials. See if there is any New trials of drugs for this Cancer and go for it. My late wife went through hell with her treatment and sadly lost her fight due to hers being Small Cell. Yours is Nsclc which has a much better response to treatment and better outlook. You will have many bumps along the road,but they are beatable. Keep Positive and God bless

John

[MacColl in reply to Babydolltina]

Very encouraging John - thank you so much!My consultant is known for seeking out access to new drugs/treatment. The Lumakras had only been available here since mid January for trial with my lung and brain conditions and my consultant had me sign consent application and got me on it right away.

We’re keeping fingers crossed that it is working to hold of progression for a few months.

So sorry about your wife.