Dad's stage 4 cancer treatment

Hi Gal2000 

That's great news that you dad's tumours have shrunk significantly but I'm sorry to read how he's struggling at the moment.

I haven't had the treatment your dad has had and is going to have so don't have any experiences to share. However, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list once again.

I'm presuming that the oncologist knows how much your dad is struggling? I hope his hospital team are able to sort out these side effects as it must be horrible both for both of you.

((hugs))

Thank you. Yes my Dad has told the oncologist.  She asked him if the disease was worse than the treatment.  Dad responded saying 'if he stops the treatment he would die' . He is persevering.  Xx 

I had 2 doses of Ipi/ Nivo and had a grade 3 rash and then a spell with colitis , treated in hospital and with steroids. I then went to Nivo only  and since then I have had similar problems with low thyroid ,  low cortisol and myosotis.  I am currently being treated for all of them. Similarly the tumours have shrunk significantly. The oncology team have been very responsive ; the specialist nurses have been especially helpful and I found building a good relationship with them has been key.  Si definitely tough but definitely worth it. 

Sorry to hear of your struggles.

My Dad had bloods done last week to check his cortisol levels and it was confirmed today that they were on the low side, so they have given him hydrocortisone tablets.  I am hoping that this Will not effect his treatment and that he starts to get some energy. I don't know much about these tablets and if there any side effects to them. My Dad will hopefully if all going well will then be on nivolumab for 2 years.

Just wondering when going down to just nivolumab is there less side effects for you? My Dad is just so lethargic and has really bad tummy pain/diarrhea.  

• I went down to Nivolumab only after two treatments as the team said it’s less aggressive.  As the two dose treatments had given me quite severe side effects, the timescale had been much extended and I had had a scan, showing the reductions.  The other side effects came when I was on Nivo only but they said the ipilmumab could still be in my system.  I have always found the team very straight about everything and I think Nivo only will be fine… but my fingers are crossed! The fatigue was only really bad when the low thyroid and cortisol kicked in .  The diarrhoea and stomach pains were grim when I had colitis -  the fatigue combined with that sounds gruesome so I send your dad best wishes and hope he tells the team how bad things are .  I was a bit slow doing that at first and then realised that wasn’t the sensible thing to do. 

Thank you. You hit the nail in the head regarding being  slow with telling them how bad things are. This is exactly what my Dad is doing. I think he is too frightened to say anything in case they stop the treatment. 

He is definitely struggling, the fatigue is destroying him, this disease has definitely changed him, he went from being a fit active man to someone that struggles to even get dressed in the morning without being out of breath. I really hope that what ever time he does have left  it is a good quality of life and theat he gets to do all the things he had planned with retirement.  Fishing,golfing. 

Please encourage him to talk to them.  The team has always been responsive and measured. I have every confidence that they will do the right thing by me.  There are loads of success stories on here and I am intending to add to them, even if it takes a while ! 

Hi Gal2000,

Well done your dad for making it to round 4 of ipi/nivo! I had to stop after 2 because of hepatitis and colitis. I was switched to the single nivo dose, and had 4 and I'm tolerating it really well. I've even gone back to work. Long and short of it is, I've always been on 5mg of Prednisolone steroids when I've been on the single Nivo dose (to help with colitis) and that may have helped me a little. I'm just about to stop taking the Pred (tomorrow!) and I feel tired from steroid withdrawal but apart from that I'm okay. Everybody is different but I have noticed that the ipi/nivo caused gigantic side effects (it doesn't cause side effects for everyone) whereas the single nivo seems very different and tolerable. My consultant's say that they expect (hope) for me to settle down on the nivo. 

BTW, I've found it benefiticial to tell the team about everything. Even about 'things you'd never go to the GP for'. I absolutely agree with you and KHH. When you ask if youd dad will be able to enjoy life while on treatment, I'd say it is possible. There are medications our teams can give us for all the side effects. They are totally used to dealing with them. 

Dots

Thank you. I completely agree, my Dad is definitely just putting up with all these awful side effects as he believes if his body is tolerating it and his bloods come back Ok then he will keep going with it even though it is causing really bad tummy pain/diarrhea  and extreme fatigue!

The fatigue is definitely the one that is effecting him. The lack of energy is causing him to get quite low and it is definitely impacting my Mum's mental health. He does do much other than get up,get showered,get dressed and watches TV until bed time time. My Mum is doing everything for him.  She is prep all the meals etc.... 

It's heartbreaking for him as he wants to do more but he can't.  He has been on the hydrocortisone tablets for 4 days now and he still has no energy.  Think he was really hoping that it would give him a little more energy. 

You have been through so much Dot!  I will pray for you. X