Morning, I’m due to start chemo for my lung disease in two weeks. Just wandering if anyone has had the six month treatment? I’m worried about feeling and been sick! Sadly my ct scan and lung function has shown a 15% decrease and addition scarring so really need to be strong and get on with it......
My immune system is sadly still attacking it’s self as I have hypersensitivity pneumonitis.
Hoping you get replies soon Sjw9. Thinking of you. Xxxx
Good luck with the chemo, thinking of you. Please let us know how you are getting on. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx
I haven't had any chemo but I hope that all goes well for you Sjw9.
I haven't had this treatment so can't help but hope it goes okay for you x
Hi, I had 3 courses of chemo, over a 3 month period, following surgery for lung cancer. Fortunately I didn't have too many side effects as I was given anti-sickness medication at the same time. The worst thing that I remember is that everything tasted like seawater, and my tastebuds were all over the place.Please don't worry, I am sure that the health professionals around you will take excellent care of you and ease any worries.
🤞🏻 All goes well, and please keep us updated 👍🏻
Oh bless you, I hope you are doing well now. I’m glad you didn’t suffer to much with side effects. It’s good to know things might taste horrid, when I’ve had the steroid treatment everything tasted of metal...... not nice but could be worse. 😊
I had chemo for breast cancer (a long time ago). It's not pleasant but I wasn't sick until nearing the end of treatment and then it was only for a couple of days at a time. Some foods tasted metallic but it's easy to avoid them. Please don't worry. What we can imagine is way worse than the reality. Take care and good luck.
Yes I think you are right, it’s always worse in your head than in real life. I’ve had to wait a while due to Covid which is giving me to much time to think.
Morning. Sjw9, yes I have HP too and have also had the 6 month cyclophosphamide infusions. I was then offered an further 3 cycles as my HP had not only stabilised on the treatment but my lung function actually improved by 10%. My oxygen needs reduced from 10 lpm to 6lpm too.
I know quite a few people who have also had this treatment as we've all found the side effects to be quite mild. I'm still working full time whilst having my treatment and the only days I don't work are the days when I have the infusion.
You are well looked after with lots of supporting medication such as anti sickness tablets, anti bionics, bone and bladder protection during the course of the treatment.
I've had a few times when I've felt a bit tired and the odd day when I've used my anti sickness tablets but other than that no problems at all.
Happy to answer any questions I can to support you through this.
Thank you so much for your message, so great to hear from someone with the same condition. I am pleased to hear it worked for you. I am even more pleased that you were not sick!
Ive been told I will feel really rough for the first two days and weak and poorly for a further five days....... they have been very honest and said I will be very tired and weak for half the month. I feel like it’s been such a big build up with it all. Are you under the Royal Brompton in London? I am incredibly lucky to be under such an amazing team, working with my local hospitals.
My biggest worry is been sick as I hate been sick..... I think I can cope with headaches, Diarrhoea, tiredness etc.......
When your lung function improved by 10% was that after 6 months or did you see the improvement after 3 months? I am having a lung function at 3 months to see if it’s helping. Are you on oxygen when walking and moving about? I’m having to use more at the moment which is such a worry.....
HI SJw9 my lung function tests were done at 6 months which showed the improvement, however by month 3-4 I did notice in myself that I was starting to feel easier. I use ambulatory oxygen and after month 6 I asked to do another walk test which is why my oxygen prescription was reduced.
I think the word 'chemo is quite scary but this is only one of the drugs used in the chemo that treats cancers so I tend to call it Chemo light
😀 By that I mean that yes of course you do need to be notified of all the possible side effects, but I've met around 10 other people going the the same treatment and I've not yet met anyone who has experienced all the side effects. Just be kind to yourself and rest whenever you need to. We are all different, I really hope this treatment brings you some relief
I'm being treated at Newcastle RVI and they too are a fantastic team.
The actual treatment takes around 5 -6 hours so take a book or tablet to watch programmes, although I'm always too busy nattering and making friends to use them. I always take plenty to drink with me, some people take something to eat although we usually get a sandwich provided at ours.
You will have your weight, urine, blood pressure, temperature and sats monitored and some blood tests taken and sent to the lab before treatment starts. Then you receive and IV of saline for a few hours whilst they are awaiting your blood results before starting treatment. You can't proceed if there are any signs of infection. Then you will receive a steroid and anti sickenss infusion before the Cyclophosphamide. You are given mesna bladder tablets to take at set times during the day.
Because I'm not on steroids normally I do find it difficult to sleep the first night, but that's just me. I believe the treatment has brought on sudden onset menopause for myself and my eyes are a bit more blurry than they were before.
Some of my infusion pals are now heading into maintenance programmes where they will continue to relieve reducing doses over linger periods of time. Eg. 8 weeks, 12 weeks. 6 months etc.
Because I'm relatively young to be on long term IV's I'll be moving on to Mycophenalate after session 9.
The team are very good at what they do, they'll never put you at risk and there's always lots of options if you find yourself experiencing unpleasant side effects. Best of luck and keep us informed how it's going x
I had three months cyclophosphamide for my auto immune disease. I was given anti sickness pills and they worked for me. At the start of the treatment I went back to work in the afternoon but towards to end I found I needed the whole day off as I was worn out from it. I was also on steroids so was on a bit of a roller coaster with them. Good luck I hope it all works out for you.
Hey, Sorry to hear about your lungs. I am in the same boat. I have 2 primary cancers 1 in each lung. I have been on Prembrolizumab since Nov and I am finding it quite easy to have, side effects I can handle like being itchy or the odd cold sore. Haven't experienced diarreah at all really. I haven't been sick with treatment either. It take roughly 10 mins for saline, half hour for prembrolizumab and another 10 mins for saline. Roughly 2 hours max maybe less. I couldn't breath at the start of my treatment and now my breathing is much better, treatment is working as cancer is shrinking. You'll get through it. Good luck and I'm here to chat if you need someone who is going through treatment. Oh, and, I have no end date to my treatment and could last up to 2 year. xx
Oh wow you really are going though it. I’m so pleased the treatment is working but such a worry not having an end date. I feel much happier having read all the comments. I’m so desperate for the treatment to work as there’s not much less they can do. My lung function has dropped 15% in 3 months which has been such a worry....... I feel confident that the chemo will stop the body attacking it’s self. 😊
Best wishes for a successful outcome and hoping that the journey to get there won't be too awful. xxx
Hi Syw9, sorry to hear about your lung problems. Hope everything works out well for you. My husband had just started his 1st round of Chemo last Friday,
Afatinib stopped working a few months ago after just one years since he was diagnosed with stage 4 lung cancer .
First day after chemo he had constant hick ups all night and into the next day, we tried everything to get rid of the hick ups ,but nothing work!!!
After that he’s hands and feet was slightly swollen., constipated, nausea .
He felt extremely tired , and lost of appetite, by Sunday his stomach was bloated and hearts feels racing .
The build up of all these side affects really strained him out .i phone the nurse this morning for advice as I was really worried he’s not eating enough and doesn’t seem right and was told to take him to A&E for a proper check up.
They’ve kept him in tonight and maybe for a few more days so they can monitor him .
It looks like my hubby had all the side affects, he’s now in safe hands of the oncologist team tonight.
Good luck !
Wishing your poor husband better. At least he’s in the right place now. Fingers crossed he feels better tomorrow when you see him.
Hope your Husband Feels Better Tomorrow Or Very Soon 🖤🖤
Thank you Captain. 😊
Good Luck With The Chemo Take Extra Care Keep Safe Keep Us Updated 🖤🖤
Thanks captain! 😊
Sorry I can’t be of help to you..wish you luck and sending Hugs .
Thank you 👍
Wishing you luck. I have H P as well. Sadly I can't tolerate even low dose chemo treatment-one dose away from liver failure apparently. So really sending u positive vibes. Here's to better health..
Sorry didn't mean that to sound negative! Your excellent sounding team will have tested u to avoid that. Please don't worry- it's to do with liver enzymes. Good luck. M
Hi SJw9 how is the treatment going? Are you managing to tolerate it?
Lung disease doubled
diffused lung disease
Interstitial Lung Disease
CT scan says I have bullious lung disease 
