Immunotherapy starts on Friday...any tips/advice

Great news that the pains have gone...I call it 'squoosh lung' pain . Also great that your appetite is back. Fingers crossed you'll have minimal side effects from keytruda...

Onwards and upwards .. we're in this for the long haul...and we're going to make it a very very very long haul...we can get through this xxxxx

Hi Elsie 

lve been having keytruda since March this year following my diagnosis  , I get it every 6 weeks via a drip 

It’s painless although I’ve been advised that side effects are unpredictable and not as severe as chemotherapy 

so far I’ve had mild nausea which has improved enough to stop the medication for it and it has caused hypothyroidism , for which I take a tablet every day but in the whole scheme of things it is tolerable

i wish you well and I’m always ready to reassure you 

I hope your first treatment went well and you got more information and support at your clinic appointment , it’s an emotional roller coaster following diagnosis 

take care of yourself and take one day at a time 

Hi there...just wondered how you are doing after your first immuno treatment. Hope all is good xx

Hi Elsie

I got on well with the immunotherapy thank you. Just a bit of fatigue initially and some nausea that is now controlled with tablets. I also now have my own lung drain in now, just like you. It was inserted on Friday last week so still have the district nurse popping in to dress and drain it for the next few days. It's doing its job although the skin is getting a little raw so I am trying to keep it dry and sweat free. The best part is I can get out and about a little now with much less breathlessness. Yay! Will build up gradually of course. 

How are you doing? Any side effects from immunotherapy yet? 

Speak soon.

Sally x

Hi there ..great that all is well and your breathing is better. How much are you draining each day? I had the district nurse for a couple of weeks and then my hubby started doing it for me, but now I'm doing it myself with the aid of a mirror. I'm now draining around 110mls a day so it really has decreased in amount and my oncologist says that as the treatment works it should go altogether. As I said before...I've mixed feelings about the drain....part of me wants it gone but the other part likes the fact there will be breathlessness. I'm now doing 10,000 steps a day, well I have for the last few days...but I'm planning on trying to do it every day.

I know what you mean about skin being raw....I get itchy around the sides of the dressing...

So pleased you aren't having bad side effects too...mine just seems to be tiredness in the afternoon so I have a snooze between 3 and 5 most days which really helps.

Hope you're not to sore after the drain was inserted...I felt a bit battered for the first few days.

Take care and keep in touch....we're gonna batter this...

By the way ..my real name is Gill....I made up the name Elsie Slayer ...Elsie standing for :

L (lung) C (cancer)...

Xxxx

Hi Gill, 

Clever user name! Love it! Pleased you have managed to increase your step count, remember to keep it manageable so listen to your body. Great that you can be independent cleaning and draining yourself. I am hoping to get to that stage eventually too. My OH tried to do it yesterday under nurses instruction. He did well for the first time. The first drain at the hospital was 500ml and the pleural nurse said she wouldn't take any more because when I had 800ml removed I had the most awful coughing fit and my inner organs dropped into new positions which was really painful. She recommended initially to just drain off minimal so the first 2 days we did 100ml each and today 250ml. From now on we will see how much more is there and drain accordingly. Will pp over to see pleural nurse to remove one of the stitches on Fridsy and pick up a few more drainage packs. 

Because I live on the boat and officially 'no fixed abode' I have had to register with the local gp practice so the nurse can order me more drains. The alternative would have been to order them myself from my regular practice 30 miles away. (I kept my old GP from before I bought the boat). Nothings straight forward when you are a boater lol. 

Still feeling a little battered and bruised after insertion but it is beginning to subside a bit now. It's in bed that causes me most discomfort. Thankfully I have the bed to myself! Lol. Nurse has even ordered me a mattress hopper and cushion for my chair to help avoid pressure sores. Anything that's free I will accept. :) 

Pleased you seem go be into a routine including a nap. That's my biggest problem at present. With all the stuff i have had been through recently i am out of routine completely but do manage to eat and take my meds at the same time each day. Sleep happens when my eyes droop! Lol 

Take care and look after yourself...we can beat this! 

Sally xx

Hi Gill

How are you and are you getting on with your treatment? I have had a few things going on, goo an bad. 

First thing, good, looks like I may be having my chest drin removed. Only getting about 50ml after a week. Will see how much we get today. Getting a bit breathless though but evidently not through fluid.. probably the Keytruda. 

The bad, lost my darling African Grey a week or so ago after she had a fall. She was disabled and she broke her deformed spine and died in the vets hands. 21 years old so still getting used to not having her around. 

More good, had treatment number 3 as I have 3 weekly treatments. So far minimal side effects, nausea an tiredness mostly. Some itching but not too bad. Getting my 3rd Covid jab on 19th November the same date as my next treatment. Been told only allowed it after bloods have confirmed I am fit enough. Flu jab th next time. 

Would be great to hear from you Gill. Take care. 

Sally x

Hi there, I'm so so sorry to hear about your poor bird, you must be devestated after 21 years. We lost our 16 year old dog last year and it hurts like hell at first, you just miss them so much

Im glad things are going well for you and that's great that you are having your tube removed. Hopefully the keytruda is doing it's trick and all the evil cells that were there have now gone. 

I've gone from draining everyday to every other day, then every three days...and now I'm about to do once a week. My effusion has been the only symptom I have so even though I've had to drain loads I think Im pretty lucky all things considered.

I had a my first CT scan since treatment and gets the results on 10 Nov when I see the onc...so that's a bit scary. Just got my fingers crossed.

I'm just trying to be positive about things now as I've been focusing on good luck stories...I read the other day a post from one lady with stage 4 who was given 15 months...12 years ago.. so that's encouraging.

How is your breathing etc now youve had a tube...I hope you are feeling loads better.

I'm forcing myself to do 10,000 steps a day but I did fail the other day. I went out in the wind and rain and felt like I couldnt breathe... So that was a bit scary and annoying, but I then read that walking in the wind puts added pressure on the lungs so that made me feel a bit better about it all.

 Anyway...it's great to hear from you and really great that you are having minimal side effects from treatment. I just get tired on the afternoons so i have a siesta

Take care and keep in touch

Luv Gill

Xx

Hi Gill

Great news you too are about to start drains weekly. I was told 50ml a week for 2 weeks can mean they consider removing the drain as the lungs can cope with that amount themselves. Spoke to the nurse today and she will ring me tomorrow with a date for removal.  

I know what you mean about wind and breathlessness. Had the same. I was fine for a while but strangely, since I have been drawing off less fluid my breathlessness is coming back. Odd! I asked nurse if it was the Keytruda and she thinks it might be. Hey ho. 2000 steps it is then. I do other bits to keep active though when I can like pottering about with plants and cleaning etc. 

Coming to terms with a quieter boat and one bonus is no feathers, dander or far flung seeds to clear up... gotta be better for the chest I suppose. 

Fingers crossed your fluid drains well and you can keep up your step count, you are evidently doing great! I am sure your CT scan will show that too. Good luck! Waiting for a date for mine. 

Positivity as you say is vital, I hear many people showing no evidence of disease after Keytruda, some after just a few infusions, others a year or so on

Either way it fantastic what can be achieved these days.

I am on a facebook page called "Keytruda and I" it has people worldwide on it and with different cancer diagnosis'. All to be taken with a pinch of salt but some very positive stories and support on there too. Some Americanisms to beware of though lol. 

Keep in touch and good luck with the scan results. 

Sally x

Hi Gill

Great to hear you are doing well. Sounds very positive indeed. I have my fingers crossed your CT scan shows positive news for you. As you are draining less frequently, that is obviously a great sign. The Pleural Nurse told me that if 50ml or less is drained each full week and again the following week, they will consider removing the drain as the lungs will naturally cope with that amount of fluid themselves. 

Yes, it was a blow losing my darling bird Charley, it is so quiet now but on the positive side, no more stray feathers, dander or far flung seeds etc to clear up. Must be better for my lungs too! 

I know what you mean about the wind affecting breathlessness, but at least you are doing brilliantly otherwise. My breathlessness, bizarrely,  has come back since my fluid levels have reduced but having spoken to the nurse, it may just be a side effect of the Keytruda. Ah well, 2000 steps a day it will remain! I try to do other things to keep active like pottering around with planters and cleaning etc. 

I get tired periodically too but not in a specific routine, especially during the few days after infusion. Sometimes i wake at ungodly hours.. other times, I sleep for England lol.  

Anyway, I have my fingers crossed for good news from your CT Scan, I am awaiting a date for mine. 

Keep in touch. 

Sally