SCLC - How are you all doing?

Hi Lucie, It looks like you and I are in the same place - My Mum is 77 and was still working up until June when we got this news.  She is looking really well considering and is full of hope and that's what counts.  I have read everything there is to read on this - I needed to be prepared so I could help her.  She was totally shocked by this, as she looks really well and healthy on the outside.  She had a stroke and this is what brought the Cancer to light.  She is starting to swell round the abdomen (liver has 3 tumours) and has back pain, it's in her spine.  The lung is the primary (2 tumours) and has spread to lymph at breast bone, liver, a lymph gland in her right shoulder and now her spine.  It has taken over her body so fast and she is so small. She was given 6 weeks to live without Chemo and 6 months/possibly more with Chemo.

She also has just completed her 2nd round of Chemo (Carboplatin I V) with 3 day tablets of Etoposide, she also got one blast of Radiotherapy to her spine.

On the 24th Aug, she is to get a scan to see if it's working or still spreading, we will find out the results on the 31st Aug.  If its not working, they have said that the is no point in continuing with the treatment as the Chemo will be to hard on her and not have results expected results.

How are you managing with all this?

All my love to you and your Dad xx

Hi

Sorry to hear of your Mum’s diagnosis, it sounds like she is a true fighter. It is a massive shock isn’t it and complete turns your world upside down.

I will keep everything crossed for some positive news from the scan. How are you coping?

I have good and bad days, he’s very tired today from the treatment but it’s day 3 after treatment, day 1 after the Etoposide tablets. It’s just awful seeing him like he is, he has struggled with it all mentally to be honest but I think he is doing better than he thinks he is.

All the very best xx 

Hi Lucie

Its not easy for us, sitting watching and waiting.  It must be hard for your Dad, poor soul. How can they take all this in - it must be horrific and feel like a death sentence - not completing what they had planned to do.  This was my Mum struggle.

She accepted the Chemo to give her that time with Grandkids and to feel like she has said her goodbyes.

For my Mum the Chemo is only going to delay her Cancer spreading for a short time.

My Dad also has Terminal Lung Cancer - but a slower progressing cancer - He doesn't get any kind of medication.

I feel helpless most of the time but spent it getting them the benefits from DWP and Attending Allowance.  Getting all their affairs in place.  Contacting funeral homes, as they wanted to pay for it beforehand and not leaving it to us kids.

I find it best to try and keep a sense of humour when I am with them, laughing at stupid things

If you need to talk you can add me and I will get on this straight away.

All my love you and your family xx

Hi Lucie, I thought I would give you an update on my Mum - see if it helps - We got good news today - Mum, after 2 rounds of Chemo, it seems her cancer on her lung and lymph nodes has shrunk by a 3rd - She's been a superstar.  She starts her 3rd round tomorrow.

Hi,

That is fantastic news! It’s so nice to hear positive stories, wishing her well, you must be delighted?

xx

Thanks Luv - Just now it feels like a miracle as her initial 6 weeks was up last week.  How's your Dad doing xx

That’s brilliant. Hope it continues.

My Dad is OK, has his 3rd cycle next week. He’s getting about, eating etc but still tired but I think he’s doing better than he thinks he is xx

Hi Lucie,

I just came across this thread. My mum (64) was diagnosed with Extensive Stage SCLC in August 2020. She had months of back pain before the GP did anything about it and we finally received the diagnosis. At the time there was a large tumour in her lung, and several mets in her spine, which had caused fractures, and hence the back pain. While she was in hospital waiting for a biopsy/start of treatment, it then spread to her pelvis and femur. She was bed bound and put into a back brace for several months. She underwent the triple therapy (2 x chemo and immunotherapy) and finished the chemo in Dec 2020. These treatments have worked amazingly well, all the bone mets/fractures are healed, the lung tumour is now gone and basically there is no sign of the cancer in her body. Except for the brain. In April they found some tiny tumours which they treated with Cyberknife, and on her latest 3 monthly scan they have found 4 more tiny tumours. They are now planning full brain radiotherapy to try and put a stop to them.

But on the plus side, my mum has gone from being someone who was told she was unlikely to survive to 6 months (even with treatment), to being a year post diagnosis, seemingly fit and well and living life to it's fullest. She continues with immunotherapy every 3 weeks and that seems to be keeping everything below the neck in check for now. Hopefully the FBR will sort the latest brain mets out. Shame she will lose her hair again, just now it's starting to look good after growing back! But she seems to be accepting of that.

The immunotherapy seems to be working amazingly well for my mum, and hopefully that will continue for some time yet. I know how scary it is, and the stats online did not help at all! (I actually work in pharma in drug development, not sure if all this knowledge helped or made it worse for me...) 

Long story short, I know how you feel... But stay positive, the treatments available today are so much better than what was available just a couple of years ago! 

Sending all the best wishes to you and your dad, 

Emma

Hi Emma,

That is such an amazing story! Such wonderful news to hear. It sounds like your Mum is doing amazing, must be such a relief to hear positive news from a scan, obviously not the news you wanted with regards to the brain scan.

How did she find the treatment? It’s been tough on my Dad but this week he is better, just on count down for Tuesday now which will be his 3rd cycle. He is also very anxious about his scan one his chemo has finished, he will continue on immunotherapy providing the cancer remains stable.

Thank you and also best wishes to you all and your Mum.

x

Hi Lucie,

She was hospitalised for about 3 months after the diagnosis, and due to covid she wasn't allowed any visitors (that was REALLY tough) so for the most part I didn't really see what was happening with side effects. Obviously we were in touch daily and we spoke on the phone several times a week. The chemo was a little rough on her, the nausea was managed pretty well with meds, but she did suffer from neutropenia a couple of times, and at one point had the beginnings of sepsis so was put onto IV antibiotics. Also due to the mets, she had issues with electrolyte imbalances (apparently common with SCLC) so needed to have her fluid intake severely restricted, which for a lady who drinks tea continuously, was also tough. But she bounced back pretty quickly once all 4 cycles were over, and luckily tolerates the immunotherapy extremely well, so that doesn't seem to do much to her side effects wise when she has it every 3 weeks.

SCLC often reacts very well to chemotherapy in the first instance, so I hope your dad (and you) will have some good news when he has his scan at the end of the 4 cycles. The immunotherapy has also seemingly continued shrinking mums tumours after the chemo was complete, I'm so grateful she was able to get this as it was only approved in early summer 2020, it also seems to be doing a great job of keeping it in check for now. 

I know it's tough on him, but it sounds like he's doing great, and I'm sure it will be worth it once they see the results (will keep everything crossed for you!) Are they planning any radiotherapy on your dad's spine? Mum had T4 irradiated at the beginning as there was some cord compression, and that really helped too.

Sending lots of positive vibes for cycle 3! 

Emma