Immunotherapy starts on Friday...any tips/advice

Hi Muffin break

Sorry things have turned around unexpectedly for you, I too know that feeling. It does sound like you are doing really well though considering the last 8 weeks have been a rollercoaster for you. Great you can still play your beloved football, long may that continue. 

You sound really positive and I find a positive mind is essential to doing well on this journey we find ourselves on. Mine has took a beating over the last couple of weeks but hearing how well you are doing really helps me get back some of that positivity too. Thank you and keep it up. You are doing fabulously! 

This forum can help us all to help each other. Speak soon.

Sally

Hiya Sally I'm glad you are getting some of your positivity back, it is so easy to lose it. When I was told I had incurable cancer my whole world just caved in. I couldn't stop crying. My wife was so supportive and caring but I could see it in her face that she was struggling but she was trying to be strong for me. I couldn't except it at first, I kept saying they have got the results mixed up ? Then after they operated on me without success I thought there are 2 ways to go downhill or get back and fight it, and that's what I'm doing, I'm staying positive strong, and most of all I'm listening to my body when I feel tired I rest or sleep and exercise when I feel I can and apart from that I'm enjoying life. Sorry I've gone on a bit. Take care and hope all goes well for you Rob x

Hi...thanks for your response...you're right...I need to find something that takes my mind of the situation as constant googling is just making me feel worse sometimes.

I managed not to cry yesterday ..woo woo...

Hope you're doing ok too and you are managing to eat a bit more.

Xxx

Hi Elsie, I still get my down days, it is only natural to feel sad about our situation. It is about adjusting to the new way of life, and part of that includes grieving our old life. One day at a time. If you have a bad day, it doesn't mean tomorrow has to be the same. 

It is good if you can step away from google. Lung cancer treatment has come such a long way, and although the internet does give us a lot of information, it is outdated. 

Hope you are feeling good today xx 

Hi Everyone

I hope you are all well and keeping that positivity flowing, let me know how you are, we are in this together. 

Just a quick update from me. Still struggling with the food and appetite and the breathlessness but feeling much more positive. Spoke with Oncologist today and I begin Keytruda treatment on Friday 17th September. Told him how I was and he has decided to do a face to face appointment with me next week instead of a phone call. He wants to check me out I think to ensure I am up to the treatment first. I suppose that is enough to push my determination up a notch or two! I can also view the review CT scan that I never saw as it was a phone appointment.

I will have infusions every 3 weeks, at least to begin with, less harsh, easy does it I think after my recent troubles. He even asked me if was depressed, I suppose because I was less chirpy than usual. He is very perceptive but I think this is just a short term blip. 

Anyway, onwards and upwards, live the life you love everyone. x 

Sally xx

Hi there....great that you're starting keytruda soon. It's 2 weeks since I had my first treatment and so far so good. I feel a bit tired in the afternoons but don't know if that's treatment related or me just being lazy. I've no other side effects at all...fingers crossed I stay that way but who knows. Hope your appetite comes back soon and that you have a good weekend.

Sending lots of love and positive vibes

Xxxxx

Hi Elsie

How are you doing? I have been getting my appetite back but really struggling with breathlessness. 

I had my pre assessment for immunotherapy today and also another plueral effusion drain. This time they removed 800ml. It was pretty horrid especially at the end where I ended up coughing and gasping for air. I was told that was because all the inside organs etc had to resettle after the fluid had taken up so much space. They want to wait to see how I cope with immunotherapy before deciding if I need the semi permanent drain in. 

I have a coupke of days respite until the first infusion do I'll make the most of them. 

Would be great to hear how you are doing too. Speak soon.

Sally x

Hi there....so sorry to hear you're struggling with breathing. I have the semi perm drain fitted... And I drain on a daily basis. I was diagnosed due to my pleural effusion and and at first they got a massive 1.5 litres from me. I used to get very strange pains after each drain, it'd sort of feel likea wind pocket in my chest area...also when they drained the fluid I'd get a sharp pain when I was 'empty'. I counted up yesterday and I've been draining daily now for 44 days! The good thing is my breathing is great, there is no pain at all when I drain now, and yesterday only got 170mls ... 

I've been absolutely fine after my first dose of immuntherapy...I get a bit tired in the afternoon but I've always liked a siesta so it may just be that I'm lazy .

I have such mixed feelings about my tube...part of me hates it but the other part is relieved I've got it as my breathing is perfect. I'm currently walking 3 miles a day in total too. I keep saying to my friends that the irony is that I've never been so healthy!

Please do keep in touch and let me know how you get on. Thinking of you xxxxx

Hi there...how are you doing.? Hope the wierd lung sensations are settling down and you're doing ok. Please let me know how you're doing. Xxx

Hi Elsie

Good to hear from you again, thanks for your info on you yesterday, it's really helpful having someone who is going through similar isn't it?

It sounds to me that the drain is doing its job but i get why you have mixed feelings about it. 44 days wow! I have been told to wait until they see how i respond to my immunotherapy before they make a decision as it if i have one inserted. (As long as I have minimal side effects they will probably insert it sooner rather than later). 

I am doing good now thanks. All the weird shifting has passed now which included my lower back and tummy too. Apparently before they drained the fluid my diaphragm was really domed and high so made it challenging to know where to insert the drain. I think that's probably why it hurt so much. Today my breathlessness is minimal and I slept so much better. I am breathing really well. 

Will pop out for a short walk soon to see how I get on. My appetite is so much better too so things are looking much brighter.

Have my first infusion tomorrow afternoon which will be at a different hosiptal to where I had Chemo so will need to get familiar with the set up there. The nurse at my pre assessment was lovely and talked us through most of what to expect though.

Will let you know how I get on with side effects over the weekend or beyond, hopefully will be minimal. 

By the way, tiredness and fatigue are common symptoms with cancer and related treatments so no, i dont think you are being lazy! 3 miles a day is far from lazy lol. 

Keep looking after yourself and the positivity that is coming through in your messages. Have a lovely weekend.

Sally x