Side effects - radiation/immunotheraphy (pembro/keytruda), chemotherapy (cisplatin) - looking to hear others’ experiences

Hi 

I have cervical cancer 2 a 

I was lucky enough ( If anyone is lucky having cancer ) to be offered the new regime of 6 weekly chemo consisting of plaxotil and carboplaying . I was given strong sickness meds but thankfully got through that ok . I was then put on chemo radiotherapy , consisting of cisplatin and radiotherapy . Unfortunately I could only have 2 treatments of cisplatin because it completely wiped my blood out . I have not long finished 27 radiotherapy . I was tired and found my legs felt like lead and I did it whilst using public transport . I found keeping positive helped and talking to people and just doing nothing if I felt that tired . I was warned that I might suffer bad diarrhoea which worried me but I then realised as soon as I ate I had to go to toilet which I then planned my trips around . I had lots of heartburn and wind which docs gave me meds for . Everyone is different and do it at your pace and don’t worry what others think you should do . My main problem is my blood count is so so low and I had 3 blood transfusion and then on finishing rads I have just been in hospital having 5 units of blood prior to brachytherapy . Everyone journey is different and we all have different side effects etc . I also found talking to msggies if your hospital has one or just phone macmillan or cancer nurse everyone is so kind and will listen . If you need to know anything else please ask but you can do this and it’s not forever that’s what helped me focussing on 

Sorry I meant to say that I took lazanprol for heartburn which also help with nausea and my godsend was rennies deflatin for wind , it worked in minutes and stopped the wind and bloating 

Thanks for sharing your experience.

i was also on carboplatin/paclitaxel for 6 weeks, that’s what they called the ‘induction chemo’ for me. And this is now the second phase of treatment weekly chemotherapy/immunotherapy plus daily radiation. They’re basically giving me full arsenal due to the stage of my cancer I believe.

my white blood count has been low, I’ve been given injection to boost bone marrow to create more white blood cells do let’s hope that works. 

what a trooper you are using public transport! I must admit I’m relying on taxi’s just because hospital is quite far out and public transport would require lots of changes and much more time commitment- but I applause you for being able to do it!! 

I’ll look into using rennies - that might help with the burping - thanks for the recommendation! 

I’ve had diarrhoea already (must have forgotten to write tgat in my post) but not sure if it’s due to the radiation or the laxatives they’ve asked me to take. I had one radiation session where I had to try 4 times before they went ahead with radiation (it was due to a full bowel, then a full bladder, then bladder was too empty! And then on 4th try they could proceed). It was just stressful getting undressed/dressed again and then waiting around each time, plus the time it took each time to get situated under machine and for them to then take the X-rays to check and then be told I had sth ‘not right’ going on….. all part of the journey I suppose! 

I totally understand that we are all different and every body will react differently but it still helps hearing about other people and their struggles and journeys. Thanks so much for sharing!

Hi LOO1 

I’ve got no experience of immunotherapy drugs but I’ve been through chemoradiation with Cisplatin. 

I had 32 sessions of radiotherapy and by far the worst side effect for me was fatigue. I found it exhausting. I did have very bad diarrhoea starting in week 3, but that cleared soon after treatment and I took meds for it along with heartburn meds because I had that too. I also had bad radiation cystitis, but again this cleared up soon after treatment. I couldn’t have used public transport or taxis-my hospital was 1.5 hours away and the diarrhoea would have been an issue with no warning! 

I was never sick once, and never felt nauseous, but only managed 4 sessions of Cisplatin due to my blood counts. It did, however cause me to have a pulmonary embolism which stopped me having the scheduled brachytherapy. I was then on blood thinning medication for about 6 months afterwards. That seems to be quite rare-I don’t know anyone else this has happened to. 

I just counted down the days to being finished-each one done was one day closer to the end, and I rested and napped when I needed to. It’s a relatively short period of your life but I found it pretty intense to go through, and I didn’t have the induction chemo as that was only a trial and not a standard part of treatment when I was first diagnosed. I tried to keep a positive mindset that this treatment would work and focus on that and just getting through it.

Keep going and it will be over soon-you’ve been through a lot already but you’re on the home ward strait now and I hope you continue to cope well with everything.

Sarah xx

Hi LOO1,

as with sarahH21 i had the 5 weeks of chemo/radiation. The chemo was given weekly on Wednesday mornings and the radiotherapy daily Mon - Fri. 

I felt really sick with the chemo that pretty much lasted until Saturday lunchtime but i was then able to make something of the weekend before it all started again on the Monday. I cant remember the name of the meds but the anti-sickness steriods did seem to help the sickness a little (i had bad morning sickness with my daughter 15 years before and it felt like an enhanced version of that). I found i had little appetite/did not feel like eating Wednesday - Friday but then built my strength up with lots more tasty food at the weekends.

I use to find the radiotherapy sessions very fustrating because, as you have experienced, the bowel and bladder both have to be a certain size so there were endless trips to the toilet/drinking water/jumping on the machine then off again for them to check again - i hated water by the end of the 5 weeks!!!!!!

But as all posters have said you kind of get into a routine with it all, you body kicks and i found i was more often than no drinking enough etc - I did not go anywhere without my phone/headphones for music audible books. I also used public transport (i think granny55 and i are both Londoners!) so the journey, the annoying bladder/bowel routine and then trying to get enough sleep to start it all up again felt like a full time job - sometimes i think the busyness helped!

Im so glad you have a good support network, one thing i learnt is to be honest with mine about how i was really feeling,the good the bad and the ugly 

Everytime i got through a week i gave myself a little treat - that was something to look forward to

You have done incredibly well to get this far,keep going, count down the days, you will be there soon xx