Almost a year since diagnosis

Hi,

Oh, I feel for you. Been there, done that. We get told that immunotherapy is a walk in the park compared to chemo and maybe it is but easy it is not. Pembrolizumab is The Good Stuff - if you're in the 1-in-5 at all and high PD-L1 on top of that you're looking at surviving this.

Understand that right now you've got an immune system that has gone paranoid. It's crazy, and you're feeling it. Engineers say "if it ain't broke don't fix it" - good advice, but your immune system has thrown that rule totally out of the window. The way I figured it was the less tumour I had as it shrunk the more Pembrolizumab was left over to torment the rest of me. That's what it felt like, anyway.

Like a lot of treatments, immunotherapy will mop up the low-hanging fruit first and in a hurry. Initial tumour shrinkage can be really encouraging, but then it slows down. After a couple of years or so the rate of shrinkage is down to little or none. Hopefully by then you'll just be on regular scans and putting your life back together.

Exercise is a big help, though getting told that when you're too wiped out to do much of anything at all is no help at all - sorry about that. Start slow and doable, regular is better than intense, maintain that level as long as you can and try to slowly/steadily increase it. Walking is brilliant - it gets you breathing, gets the heart pumping, and those things will help clear your lungs. I had emphysema too as a side effect from Pembrolizumab, it's common but if it gets too much tell your consultant, who will likely have something for it. Exercise boosts the immune system too, so you get more bang for buck out of your treatment. Time spent and distance covered let you measure progress. And remember - you don't want to beat cancer only to give yourself a heart attack so keep it doable.

A small teaspoon of Creatine Monohydrate every day will work wonders for your energy levels, mental and physical, so consider that. It's very safe, my consultant wasn't at all bothered by me taking it. And if you read something on the internet (like this!) and just start doing it without telling your consultant first you're an idiot!

kind regards
Steve

Hi Mandrose

I hope your weekend is going well and you managed to get out and have a bit of fresh air. I am 59 so around the same age as you, my diagnosis is nsclc, I am 18 months into treatment, if you tap my avatar you can read about my treatment so far. Like you I continue to work full time I find it helps and I feel part of the world, like you I told everyone around me at work about my cancer and they are brilliant, a part from asking how my treatment is going they don't try and force me to talk about my cancer, but they have all said if I need to they will listen. So I feel very blessed with this group of people. They treat me just as the did before and we have a lot of laughs and jokes, just how I wanted it to be.

I am a little ahead of you with my treatment but I do find I get more fatigued with each treatment cycle and some of the other side effects can get me down at times, medication has been suggested to me but I don't think I have an issue with anxiety or depression so I have not requested any medication. I find talking helps and a bit of exercise even if you don't feel like exercising try and push yourself a bit just a short walk can help. I also do puzzles they help keep my mind active, because if I don't keep my mind active I find I start to think about the cancer and not in a positive way. In short exercise, talking and keeping mentally fit works for me, down days do happen but thankfully not to often. I don't think your being a drama queen at all in fact I would suggest given what you are dealing with you are doing very well, so give yourself a big part on the back, you can't always be upbeat and positive, if you think about it even before your cancer diagnosis you had down days we all do and not for any particular reason, with a cancer diagnosis it's easy to put the blame there specially as the treatment can be harsh. But remember you are doing well overall, just for peace of mind do get your breathing checked. 

Enjoy the lovely weather today 

Donna

Hello . My husband is now on immunotherapy and is worse than on the chemo ! He was told he would be less tired but it’s not so . He’s not working , but works in building so I’m not sure what he could do. He’s always tired , slept for 23 hours from yesterday. He seems totally uninterested in anything at all , I’m also got a broken arm so I’m struggling especially when he’s grumpy which is often , I think he’s in his own world just trying to fight this . The day to day of this is very hard . He had the breathlessness same as you . It’s very frightening.  You are still working which is amazing . 

Thank you so much for your kind & very reassuring reply Steve. It’s certainly put things into perspective & I can now understand why my body feels like it is all a bit crazy, lol! I had my scan today & am feeling calmer about the results due in 2 -3 weeks. I’m afraid I haven’t been convinced about exercise yet but it has made me think about what I could actually do, which is a step in the right direction, so thank you again. 
Wishing you well

Mx

Thanks for your lovely reply Hamhat! I had a pretty good weekend, in fact I decided to buy myself a new car, lol! We certainly do seem very similar with our cancer & the way we deal with it. I’m so lucky to work for a great organisation & team of people plus my family & friends are amazingly supportive too. I’ve always been a bit anxious as a person, so my lovely cancer nurse said it will often increase after a diagnosis, my plan is to see my gp soon as I do think a bit of medical support in that area will help. 
I told the consultant at my appointment last week about the breathlessness & she said the scan I’ve had today will show if there’s an issue. I’m just hoping it’s all part of the anxiety I’ve been feeling On a happy note, I’m going to centre Parcs with my 2 grown up sons in 3 weeks - we’re very close so it’ll be great to have a laugh, lots of fun & make some memories. 
The treatment can be harsh & I’ve stopped saying “I’m good” every time someone asks how I am, instead I say “I’m a little up & down but good at the moment”. I don’t look poorly at all so it reminds everyone I am and takes the pressure off if I’m having a bad day. As is said to Steve, I’m going to have a think about what I could do to exercise, I’ll have to find some energy from somewhere but I’m sure I can do it! 
Hope you are keeping as well as can be expected

M x

Hi Tuesday, I’m sorry to hear that your husband is having such a rough time. It’s tough on you too, with or without a broken arm to cope with it all. I’m also very grumpy at times & can snap at the slightest thing but I’m always grateful when my friends & family accept my apology. 
I’ve not had chemo, so I can’t compare the treatments. I also have psoriatic arthritis & fibromyalgia, so was trying to cope with fatigue before I got cancer but this fatigue is in another level. 
I work in an office so am able to continue work at the moment, although as I mentioned I’ve cut my hours down a bit. I can assure you there is no way I could do anything physical such as building work so I’m not surprised your husband isn’t working at the moment. 
I’m really grateful you took the time to reply to me, even though you have a lot on your plate at the moment. 
I hope your arm heals soon & your husband starts to feel a bit better. 
Take care

Mx

Thankyou and I’m so glad you are feeling better . My husband has improved last couple of days so fingers crossed . On all your advice , i have said to my hubby perhaps some exercise may help . I hope he will think so soon . I feel it’s the treatment that’s making him tired . No he can’t work at the moment , but maybe in the future . I’m just happy if he’s a bit better . Arm is getting better lol . Thankyou snd good luck