Chemo Starts Next Tuesday - Cisplatin... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
3,741 members2,152 posts

Chemo Starts Next Tuesday - Cisplatin and Vinorelbine

Saw the Consultant two weeks ago and introductory meeting today where all the gorey and not so gorey details were explained. I will be completing 4 21 day cycles of the above. All going well this should end at end of October. I know nobody is likely to suffer all the side effects but the specific side effects on this combi are potentially very unpleasant and quite scary. Has anybody else undergone this course?

I am actually surprised that as I am having adjuvant chemo it is no different than anybody receiving it as a sole treatment (except I guess more cycles?) I was quite naive in that respect. Personally I do agree it is beneficial for me to receive this additional treatment as the Consultant has confirmed my particular prognosis after of 75% curative/survival. I can't say no to that.

Can anybody tell me would it be OTT for me to take my sandwich bag (with ice packs included) with various snacks to pick at during the day as well as my bottle of water. I was thinking of mixed nuts, a hard boiled egg, small tub of spinach and tomato salad, carrot batons and humous - that way I should be able to pick at something right? I am also going to take some sugar free sweets and mints. Can anybody suggest anything else or any reason why not to take any of this? I need to take something as I will be there apparently for up to 6 hours 45 minutes from 8.30 in the morning. It's a long scary day.

17 Replies
oldestnewest

Hi, my husband had this treatment and finished 6 months ago. He thinks that he was really lucky and had no side effects apart from tiredness.

He did however have long bouts of hiccups which is a side effect of the steroids. He took a lunch pack with him each time! I hope your treatment goes well for you . Please keep us posted! Good luck x

Reply

I don’t have chemo but do see others who are there a long time and they do eat and drink whilst having treatment so am sure this is fine. Your specialist nurse would be able to confirm. Best of luck x

Reply

Hi my husband started his second round of 6 cycles of Carboplatin and Etoposide yesterday. We take some food with us as he is not keen on the sandwiches they offer. We take some fruit, cake, sweets ( as he gets a dry mouth) and water. As he is not eating much we also took his Scandishake with us ready prepared. It is a long day. He gets bored and so he takes his music to listen to. Not so easy to read when you are hooked up to a drip. He also shaved his hand and forearm as less painful when they peel the tape off that holds the canula and line. Good luck.

Reply

Hi my husband has stage 4 inoperable, incurable lung cancer and was to have 8 cycles of the same, now please remember that everyone reacts differently to treatment but in the case of my husband he reacted really badly, he was extremely sick all of the time, his white blood cells kept dropping so he was often unable to have treatment especially on day 8. After 4 cycles and despite having daily injections to boost him his white cells dropped to zero and he was admitted to hospital for two weeks with neutropenic sepsis plus he also contracted C Diff, he eventually had 2 blood transfusions which really helped, at this point they stopped the chemo completely and after a month moved on to radiotherapy. The good news is though for all he went through it did work and the tumours shrank, and exactly 12 months on they remain stable. Day 1 is a long day and he always took food with him and a book to read etc to pass the time. We also found that the people in for the whole day were sat together so you get to see the same faces all the time and strike up friendships and believe it or not, despite the reason you are all there you do laugh together. Like I said everyone is different and my husband just happened to be one of the unlucky ones, some sail through and I hope you are one of those. Good luck and try not to worry too much.

Reply

Hi,

Your snacks sound fine,not at all OTT. Depends on the hospital but some have free wi-fi so you could take a phone or tablet with you if you have one.

Otherwise i would suggest a book, magazine and wear comfortable clothes and footwear.

Good luck with your chemotherapy

All the team at the Roy Castle Helpline.

1 like
Reply

Thank you everybody for your replies. I've been preparing (probaby over- preparing lol). Ive stocked up on peanut butter, ginger preserve, vegetable crisps, humous, salad, soups, garlic, tumeric and chilli flakes, as well a lots of different crackers. As I live alone with my cat at this time, I've been told to wear face mask and disposable gloves when emptying the litter tray and if cuddling her. Poor thing will be confused but I know it's for my benefit so I've stocked up on those too. I've also got special mouth wash (in case of ulcers and dry mouth), adult bonjella for ulcers, and I've got all sensitive, unscented allergenic shower and bath gel, moisturizer and shampoo (just in case my hair stays lol). I figured if I don't need the stuff I can still use it so it will not go to waste but I like to be prepared from day 1 just in case. I was told the other day the first 2 treatments tend to be the worse as it's normal to experience most side effects within the days or couple of week following them. At least now if I don't feel good and none of my friends are able to get stuff when I start to need it , it doesn't matter as it's all there from day 1.

My way of thinking is the second those side effects start I can act to help lessen them. Also spending the weekend getting all the washing done, and cleaning the house, and changing the bed. Monday I can chill ready for Tuesday. At least then if I feel unwell after Tuesday I won't have too many things to do and can do just one or two mall chores at a time to keep it all up. It's not been easy either as I am still recovering from LLL lobectomy (nerve pain) but it helps me mentally knowing it's all done.

Will let you all know a soon as I can how things are going.

Thank you all for caring and to dawni0508 long may your husband continue to improve and fight this awful thing. You're doing an amazing thing just being there.

1 like
Reply

An impressive list you’ve put together. If you have time, stop and pick up stool softeners, laxatives, anti diarrhea med and an anti emetic. While you are at the chemist do inquire about a supply of loratadine as well. If you use the loratadine the each night before chemo and the 2 nights following chemo it will help with bone aches.

The Cisplatin will likely cause constipation, I needed to use a laxative even using a daily stool softener. There’s no way to predict if you’ll need them or not, some people experience diarrhea. The Cisplatin will also make everything taste metallic, I found using plastic utensils helped make food more palatable. The ginger preserve will help relive metallic taste between meals and so will lemon drops. Sorry you have to go shopping again.

If your scalp starts to hurt you’ll know your about to start losing your hair.

1 like
Reply

Thank you for the helpful suggestions. Actually, I have plenty of laxatives etc in the medicine cabinet left over from when I came out of hospital and hospital Docs have said they will prescribe them any way just in case! That will save me money a I have my prescription exemption pass. I already have loratadine in tablet and nasal spray form because of my severe hayfever (with the hot humid weather we've had in the UK this summer - this week excluded! I had to have it prescribed because it was affecting my breathing post op. Thanks for all the tips though.

Reply

Hi sunshine, I also had cisplatin and vinorelbine. And the others are right, some people breeze through it- you might be one of them hopefully. Sadly some people don’t, my oncologist said I’ve had the worst reaction he’d seen but I don’t think this is the case for most people. You will probably be given all the anti sickness and diarrhoea treatment to take home with you, I was. So don’t waste your money buying it for yourself.

The first couple of days are not too bad as the steroids get you through, the worst of it for me was after taking the vinorelbine I had the most toxic diarrhoea and have never felt so sick in my life, couldn’t move for fatigue and just felt like I was being poisoned, which in effect I was. I really don’t mean to scare you and I’m sure you won’t have such an extreme reaction but I truly wish someone had prepared me for how bad it could be.

I had 4 rounds over 12 weeks and ended up on the cancer unit each time dehydrated and on a drip. I couldn’t keep even water down.

Make sure you drink as much water as you can as this will flush the toxins from your system quicker. I wish you all the luck in the world and just remember completing each cycle is one step closer to the end xx

Reply

Also your hair should only thin, cisplatin usually won’t make you lose all your hair x

1 like
Reply

Thank you BellaBe and I'm so sorry your side effects seem to have been so terribly extreme. I always drink loads of water (I keep filter jug chilled in the fridge all the time and drink at least a whole jug full every day! Guess my priority is to keep that going! It's ok you haven't scared me (no more than I was already lol) and it's true everybody reacts in completely different ways. Like you, you my hospital prescribe you with everything (and have already said what they will be ending us home with). When I had my op, as well as liquid morphine they sent me home with a months supply of paracetamol lol. Nothing left to chance! I will bear in mind your comments and hope you are now recovering well. :-)

Reply

You definitely seem to have the right attitude going into this and that is to be admired Sunshine and will get you through I’m sure.

My cancer returned sadly after surgery and chemo but luckily I’m ALK positive so have been in targeted therapy for the last nine months which has for now completely blitzed my tumours.

My thoughts will be with you when you start treatment and do ask for moral support if you need it. Xx

Reply

Sorry to hear it returned but happy for you he continued treatment is keeping it at bay. Everybody I know keeps telling me how strong and resilient I am but I don't think they understand cancer is different - it knocks everybody for 6 - so to speak. I hear what you say and I will definitely ask for support when needed. Thank you

Reply

I also had that regime post op,I had 4cycles total .I remember taking a sandwich and various items to pick at and a large bottle of water .It is all doable not particularly pleasant but neither was surgery .The big problem for me was constipation which once under control by laxatives and stool softeners ,was ok .It was worth it from my point of view ,however cancer has returned but intially had been found in my lymph nodes as well as my lung .That was 2015 and I am still kicking about in 2019 now on immunotherapy and it's working so good for a while longer .Good luck with chemo hope things improve soon .Diane

Reply

Thank you Diane. Honestly this first cycle has wiped me out. Got close to ringing the urgent number but each time improved before doing so. They insisted in trying to put a cannula in normal way last week despite me reminding them there were probs with my veins. Hey presto my vein seized up and specialist nurse was called with the ultrasound. Having picc line put in tomorrow morning at 9.00 and bloods done and it's my birthday! Happy birthday to me lol. Nausea, headaches, sweating despite no temperature and pain in shoulders and weirdly my op site is the worse (after nearly weeks is strange) Will mention tomorrow. Hopefully they can change anti sickness tablets to something else and prescribe painkillers to take as and when as can't get appointment to see GP for a few days. Silly right? 2nd lot is on Tuesday- dreading it now. Wish me luck xx

Reply

Do ask for a stronger anti nausea med. if you have a chance get some Claritin (loratadine), it helps with the muscle and bone aches. It works best when taken the night before and and two nights following chemo.

That sweating thing is pretty common. They call it tumor fever. It’s not known exactly what causes it but the most popular theory is that it’s the body’s immune system starting back up and attacking the cancer.

Sending hope that this second round is easier for you but be advised the fatigue is cumulative. The fatigue will get worse before it gets better.

Reply

Sorry above should say nearly 9 weeks lol

Reply

You may also like...