Still more bumps in the road

[Aamar1]

Hi all

I haven't posted for a while - I'm battling extreme tiredness - it's on a level I never thought possible.

Since I last wrote, I have been back in hospital for a 24hr stint- swelling still on the brain. They increased the steroids to 24mg and I reduced off them at home over 2 weeks. I'm due to re-start immunotherapy on Weds but have now developed a chest infection and have fluid on the lung so it may be delayed for another week. I feel absolutely horrendous - the cough is really painful and it's very hard to get the phlegm up. I could also sleep round the clock - this is probably a combination of withdrawal from the steroids and the infection. My face is extremely swollen so I didn't have to dress up at Halloween! I keep getting oral thrush too - not pleasant.

My oncologist is hoping the immunotherapy will sort out the mets in the brain preventing the need for radiotherapy but it will still be there as an option if needed. I'm on Pembrolizumab by the way.

I know most of you have experienced these blips in the journey and have accepted that that is the way it is. I'm not quite there yet - I've had a month of feeling pretty rough and now the infection...

Anyway, I had made plans to go to London and catch up with friends/relatives, then go to Lourdes for a couple of days so I still plan on doing that - I'm sure the antibiotics will have kicked in by then and I'll feel better.

I have lung CT scan tomorrow so I'll be finding out if the single dose of immuno that I had in August had any impact.

That's about it for now. I hope you are all doing well.

[Elt79]

So sorry to hear this - as you say we do get these blips along the way - I remember actually saying at least my wrinkles didn’t show in my face when on steroids 😂however my feet and legs were not a pretty sight! I do hope you are soon feeling better and go London and Lourdes as planned. I know it’s hard but stay strong and positive you will get through this! Best of luck with scan result xx

[Aamar1 in reply to Elt79]

Yes, I said the same myself - looks like I've had a botox overdose - think I prefer the wrinkles! And yes my legs seem to be from a different body. Oral thrush has now cleared up but I got some extra medicine just in case it flares up again. I took 2mg steroid tablet today as I had a headache that wouldn't go away behind my left eye which is one of the mets sites - oncologist advised me to manage myself. It got rid of the headache anyway.

Feeling a lot better today so the antibiotics must've kicked in. Looking forward to going to London and Lourdes now - I was getting quite anxious as I've set up quite a schedule of meeting friends and relatives!

Thanks for replying - I do so love this forum - it picks me up every time.

[Aamar1 in reply to Elt79]

I just read ur story again - how did the treatment go? Are u back on immuno?

[Elt79 in reply to Aamar1]

Had to postpone til 11 November so haven’t been off immunotherapy and as of last week my dose and frequency changed, now 400 mg every six weeks! Surprisingly no increased side effects so far - I did up my water intake a lot so thinks that’s helped so 🤞🤞for future. I will have finished the SABR before next one on 12 December so won’t miss any treatments. Have a fabulous time on your travels and keep strong and positive x

[Denzie]

Talk to your doctor about the fatigue. Since it is excessive you may need to be put on Ritalin which was created as a stimulant for adult patients like us.

[Aamar1 in reply to Denzie]

Thanks for the tip Denzie. I'm feeling better today so presumably antibiotics have kicked in. I also took a 2mg steroid which got rid of the headache - the oncologist suggested I do this if I felt I needed to.

Ritalin is the treatment for ADHD in kids isn't it?

[Denzie in reply to Aamar1]

Ritalin was developed as a stimulant for adults. It’s effect on children with ADD & ADHD was discovered by accident and a clinical trial grew out of that accident which led to using it as a treatment. At some point the body chemistry changes. I don’t fully understand it. But a child’s body handles the Ritalin in the opposite manner of that of an adult.

[Aamar1 in reply to Denzie]

Hi again Denzie

I've just re-read your story - it's amazing. Congratulations, u are an inspiration. Long may u continue to inspire. X

[Denzie in reply to Aamar1]

Thank you for those kind words.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Aamar,

Glad you are feeling a bit better now and hope you enjoy your forthcoming trips to London and Lourdes.As you can see there are lots of friends on the forum wishing you well.

Kind regards,

All the team at Roy Castle helpline

[MacColl]

Similar position, but no current infection. Also on Pembrolizumab.

My problem was that the immunotherapy caused hepatitis, and was taken straight into the oncology ward a few days after my second treatment (such things tend to happen between the first and third treatments it seems).

I had an immediate liver ultrasound scan, and was in hospital for 8 days until 22nd October. I haven't heard yet at which 1-5 stage she graded the liver problem.

A consultant on ward rounds did say it is possible to re-start it if not too severe, and also at a reduced strength initially if though beneficial, so I am hoping! He did say it hadn't reached the jaundice stage. As long as they monitor me carefully, I'm willing to try it again.

Down to 6 steroid tablets per day this week from discharge on 10, and see the oncologist on 15th.

Had a scheduled CT on 29th which was due just after the third treatment, so that will show if the two I did have actually started to work.

I did develop clear breathing and no 'rasp' within 10 days of the first dose, but I too have a bit of hard to move phlegm in my upper respiratory area.

I'm still wobbly, lost muscle mass in calves/thighs, and 8lbs with not eating for 10 days due to the hepatitis and severe mouth and lip blisters and thrush in my throat.

Thanks to an excellent housekeeper on the ward, I was coaxed into swallowing very small amounts of anything simple such as custard, milk puddings, mashed potato or vegetables in gravy, etc. and was carefully eating proper meals after 4 days of treatment beginning.

Thanks to the steroids making me eat far more than I usually would, most of that 8bs is now back. No doubt it'll help me get stronger.

Some positive thinking would help too, but as yet, I still have over a week to wait before finding out the severity of the liver problem in relation to whether the Pembrolizumab is tried again, and also the CT scan - so hoping it hadn't spread, and that the pembrolizumab had indeed begun to work. I had huge faith in that drug, and had 60-70% positive results for PD L1.

If the drug is/was working, I can put up with being absolutely wiped out physically for 10-12 days after each 3 weekly treatment, and even the sore mouth (Difflam mouthwash and Nystatin sorted the blisters and thrush in a week) if only it will leave other 'bits' of me free of more serious problems.

I do hope your infection clears quickly, and that the immunotherapy eliminates the need for additional treatment such as radiotherapy.

Enjoy your visit with friends and Lourdes, and very best wishes for the CT scan bringing positive news too.

This journey seems fraught with these bumps and potholes, but with luck we'll get over them and be able to see ahead with a positive aim.

XX