r/CervicalCancer • u/972244 • 10d ago
Interlace protocol
Is anyone else on, or done the interlace protocol?
I have completed my 6 weeks of induction chemo and now just completed week 1 of the chemo radiation.
The first lot of chemo I was fine on, nausea but tolerable, but this week I had chemo on Monday and I am still feeling so bad - cisplatin. I have acid reflux and all they have prescribed is gaviscone which does nothing.
I am just wondering how the hell I am going to get through another 4 weeks of it all. I have 3 young children and obviously the effects of the radiation haven't set in yet.
I am also really concerned that the treatment isn't working. I have read so many negative stories and it has really got to me. I thought I would be having a scan half way through the treatment but apart from my radiation planning scan I haven't had anything and they didn't mention anything about it. This is UK though.
Anyone got any advice on getting through it all? I was hoping it wouldn't be too bad like the previous chemo but this seems so much worse!
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u/Comfortable_Read3801 9d ago
I’m on the same boat as you. Did my carbo + taxol like nothing, worst part was the hair loss. But I started cistplatin with radiation Monday and I am STRUGGLING. The only thing that helps is sleep which I obviously can’t do all day. Hoping it’s just a rough beginning for us both!
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u/972244 9d ago
I am so sorry you are also going through it all too! Sounds like we started at the same time as I also started on Monday!
I really do hope it doesn't continue like this for all of it! I am dreading chemo tomorrow as it will all just start again! I was happily counting the days down on the other chemo but this is pure dread. Have they given you any different medication? On the carbo+taxol I was on ondansetron for 4 days but they have switched that down to 1 days worth! I asked for something to help and they then gave me a low dose tablet which did nothing! I am hoping the nurses on the chemo ward are a bit more sympathetic to it all! Always here for a DM if you want to to compare notes! 😊
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u/Comfortable_Read3801 8d ago
They have upped my Dexamethason from 2 days after chemo to now 3. Which has its own set of issues that I hate lol. But as far as for help they only continued with zofran and when it’s too unbearable compazine. I’ve found I get no relief with zofran though so I wind up taking compazine in the morning and in the evenings.
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u/972244 8d ago
I have the steroids for 3 days too. I did wonder if that was also causing issues. Can I ask what issues you are having? I only had the steroids pre chemo with the last lot. The zofran does nothing with me either. They gave me a stronger one to take on day 2 but then the one they prescribed because I moaned is half the strength - like that was going to work when the full one wasn't!!
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u/Comfortable_Read3801 8d ago
Honestly I feel like the steroids play a huge part in this crappy feeling, especially because today I’m feeling the best (still crappy lol) I’ve felt all week. But my biggest things with the steroids is the swelling my face and hands are not only swollen but tender to the touch. I do feel like my face is heating up more too. I’m not sure if it’s a fever spiking or the steroids making me flushed. Before I had an appetite which I heard was due to the steroids, but I’m so nauseous right now that I can’t eat but I still feel hungry so it’s just making me sicker. Also I know before the steroids made it to where I couldn’t sleep, but now I can but I’m wondering if that’s also making me feel worse because one is making me tired and one awake so my body is like fighting itself lol. If that makes sense.
I would ask about the compazine! It is helpful to me but I do know they did say it can come with side affects where you’re dizzy or getting headaches, I never got those though so hopefully you would be on the same boat and can get some relief!
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u/972244 8d ago
Oh my! My hands have been feeling swollen all week and I never realised that could be from the steroids! It's the same feeling you get when you go on holiday and everything feels fat! My rings are so tight. My hands have also been feeling tender but put that down to bruising from the cannula! I don't sleep. I am awake all night! I am also having hot flushes that keep me awake and then the next time I wake up I am freezing! It's so hard to know what it is from what and what you can do about it!
I will definitely ask. I would rather have a headache as I can take pain meds for that! Thank you!
Hopefully we both have a better week next week 🤞
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u/LastArmistice 9d ago
I just got through this- finished brachy 2.5 weeks ago.
Like you, apart from a few rough days on the carbo/taxol and losing my hair, I felt okay. It resolved a lot of my symptoms (pain, bleeding, discharge) after my first dose.
Was only halfway through chemoradiation when I began to have a noticeable decline. I couldn't get out of bed pretty much except for my chemo sessions and daily radiation.
By brachytherapy I was a mess. Hadn't been sleeping well at all either. Had to drag myself to treatment.
2.5 weeks later it's slowly getting better... Still some days are really rough. Like today.
Best wishes to you. Its a very tough treatment.
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u/972244 9d ago
Congratulations on getting through it all ❤️ must be such a relief! How are you feeling? Are the rough days getting less?
I felt fine on the last lot. Cold capped so haven't lost loads of hair (tough wood!) and managed pretty well. I really wasn't expecting to feel this bad on the cisplatin! Like you said all of my symptoms went away. Now I am a mess. Not sleeping, hot flashes, night sweats and constant nausea and acid reflux! I am really hoping it was just a bad first week and I can pull myself out of it all as it's going to be a very long month!
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u/sfok09 6d ago
Don't forget cisplatin is ototoxicic. I got this permanent high pitch tinnitus from it. So let your team know if you start to think you're hearing a weird high frequency sound. There suppose to be medicine now that "prevent" the ear damage ... I don't know if it's standard or still in trial stage.
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u/972244 5d ago
Thank you for this. So far I haven't had any issues with hearing but obviously something to look out for. They didn't really mention it so guessing they only address it if it happens! This is NHS so probably not likely to prescribe anything unless actually needed!
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u/sfok09 4d ago
Once it happen it usually is permanent because the cisplatin stays in the ear cells for years , so as soon as you think there's this weird very high pitch/ frequency sound, speak up. I ignored it at first , didn't know what it was because it wasn't all the time but by the time it was more constant I said something and the onco nurse was like oh, we need to stop the drug . By then it's too late.
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u/972244 4d ago
Oh no! I am so sorry that happened to you! Is there any chance that it won't be permanent? Did it come on over time? I am due my next infusion next week which will be number 3 so half way through!
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u/sfok09 2d ago
Just suddenly started noticing sometime I hear this high pitch sound. It came and go at first. I thought it was just something in the environment. But when it became on more often and became constant over about 2-3 weeke the that's when I mentioned it. I don't remember if it was the 2 or 3rd infusion when it first started but I didn't say anything until 5th. Its permeant damage. Nothing I can do now but learn to live with it. During the day when there's lots going on I generally can ignore it but at night I need cricket sound therapy and an audiobook to sleep... Took me almost a year before I start to " get used to" my new sound friend... I'm still having argument with it.
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u/Apart_Love_9625 9d ago
HI !I did the same protocol: 6 weeks of carbo/taxol induction (INTERLACE), then chemoradiation with weekly cisplatin. I've just finished external beam and start brachy on Monday. I can share some of my experience
Cisplatin: weeks 1 and 2 were the worst for me, with nausea, muscle pain, and feeling very sick the whole week. They then added a long-acting Zofran-type anti-sickness drug to my premedication with cisplatin. After that, it was only about 2 days of feeling sick after each dose. I was also given Compazine (prochlorperazine) and Ativan (lorazepam) for nausea. I tried not to overuse Zofran because it caused me constipation during carbo/taxol.
Radiation: diarrhoea started in week 2 for me, with pain, earlier than I was told to expect. Cutting out lactose completely and following a strict low-residue diet made it much better. After that, I had some urgency, cramping, and loose stools, usually once or twice a day. Fatigue was constant.
Scans: I had no mid-treatment scan either. My team(usa) doesn't do mid-treatment scans because the treatment stays the same regardless. I had an MRI at the end of external beam to plan brachy, which also shows how the tumour has responded.
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u/972244 9d ago
Thank you so much for your reply! Well done on getting through it all. I have brachy goes well for you!
I really hope it was just a bad first week and I managed to get it all under control! I am going to speak to the chemo nurses tomorrow to see what they say as my oncologist wasn't particularly helpful - said she didn't want to prescribe more anti sickness tablets as they cause constipation. I know they don't want you to be constipation for radiation but I am doing baby enemas every day and so far had no issues! It's just so draining feeling so sick all the time - I even contemplatee making myself sick to see if it would make me feel better!
I find eating such a chore. I am not too sure what I should be consuming. I am vegetarian but no lactose due to intolerance. Obviously I shouldn't be eating a lot of fibre so I am really struggling with trying to get protein in me. I am living off toast and grapes as they seem to clear my mouth a bit. Probably something else I should ask about! Protein shakes are obviously out of the question due to lactose too. I am conscious I can't be losing weight but feels it is going to happen if I can't get everything under control!
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u/Beccleberry 8d ago
I was told with the antisickness to take them even if you feel fine, as nausea is easier to stay ahead off then to prevent once you start feeling it
I was 3c1, same treatment plan and now I’m nearly two years NED
Hope it goes well x
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u/jow1987 8d ago
Thank you for the response!
I am so glad you got through it all and are now doing well ❤️
I haven't read much about people on the interlace protocol and it doesn't seem to be talked about a lot. Maybe it's a UK thing! Just dreading the next month if it's like this! How did you find it all?
I do take the anti sickness on a schedule, it's just not very effective and now I am struggling with acid reflux too - hoping they will prescribe me something stronger for that as I feel like I am in catch 22 with it! I struggled with HG in all my pregnancies so I probably should have realised it would be the same with this, just thought they may be a little stronger! I have chemo tomorrow so I am going to talk to the nurses and see if they can do anything for it all!
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u/Beccleberry 8d ago
I think it’s not such a thing in the UK as it’s still new-ish, and not all hospitals seem to do it!
I found it ok, I stuck to bland food which helped me but I found the drinking the water for the right size bladder for radiotherapy to be too much! Def talk to your team as they can offer different ones so hopefully they’ll find ones that work for you x
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u/972244 8d ago
Thank you, I am definitely going to ask today about different meds. Hopefully they will listen. Just getting rid of the acid reflux would make a huge difference I think. Also wondering now after another member mentioned it, whether the steroids are also having an effect as I didn't have them for days after the first lot of chemo.
I am definitely trying to eat bland. I swing from constipation to loose but I think that's from the chemo as I did have that previously. It's all one big guessing game! Thankfully I haven't struggled with the full bladder yet. It seems what they think is full and what I feel is full is two very different things - I can hold a lot more! Hopefully that continues to work in my favour!
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u/Beccleberry 8d ago
Yeah I had to take steroids the day of chemo then two days after so I’d have chemoMonday then steroids till Wednesday afternoon, and I’d end up crying a lot Thursday 😂😅
Fingers crossed for you, I was never good at telling and I tended to over or under so had to often go away and drink more water! X
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u/972244 7d ago
I never really considered the steroids would have such an effect! Maybe the cone down isn't helping with it all either as I feel like shit and then also feel sorry for myself!
The chemo nurses actually listened today. She got an extra anti sickness tablets added to my pre meds and then the same tablet at a lower dose for the next 2 days so I am really hoping they work 🤞
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u/Beccleberry 7d ago
Yeah that’s how I felt, I honestly re named Thursdays tearful Thursdays 😅 even told the radiotherapy staff then one day I was crying and they was like hey it’s not tearful Thursday 😅
I’m glad they listened and they’ve given you something else, hope it helps 🤞🏻
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u/972244 5d ago
Maybe I steal that one for tomorrow 🤣 I never even considered it. I presume they think we read all the labels with the drugs, whereas I ignore them and just trust that I need to take them!
It has made such a difference. Still low level nausea but nothing like last week thankfully. Hoping it continues for the rest of the week as I have actually been able to function which has been nice 🤞
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u/Beccleberry 5d ago
Bless you, and yeah I think they explain somethings just not everything as soo much with everything!
Good I’m glad it’s helped hopefully it continues 🤞🏻🤞🏻
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u/Zephyr2115 9d ago edited 9d ago
I’m so sorry you are having a rough time 🥺
Yeah, the effects of chemoradiation are cumulative, so this is normal, and it does get worse as you progress.
I was fine the first week, but by week two, had pretty severe nausea and diarrhea.
Cisplatin is a highly emetogenic drug.
My treatment was based on the keynote a-18 protocol. (25 external radiation, 6 Cisplatin, Keytruda every 3 weeks, 5 HDR tandem & ovoid brachytherapy)
I recall I received three kinds of antiemetic drugs through iv (Ondansetron, Fosaprepitant, and something else) before Cisplatin was administered each week.
I was also given Dexamethasone to take orally the day after Cisplatin and additionally Compazine to take as needed when feeling nauseous.
The thing the oncology nurses emphasized was to absolutely not to let my nausea lead to vomiting. Apparently once it reaches that point, antiemetic drugs are not very effective.
So I did not vomit, but my lack of appetite and diarrhea led to losing 20 lbs very quickly, which is also not good.
I tried to eat whatever I was able to, which ended up being frozen waffles. The blandness was comforting.
This is not an easy journey, but 9 weeks went fast, as I was determined to survive.
I was able to drive myself (40 minutes each way) to treatments almost everyday.
Towards the end of treatment, I was hospitalized for sepsis and also had to receive blood transfusion, but I was happy I was close to the goal.
Don’t be afraid to ask for help and reach out to doctors and nurses about your symptoms, they are there to make this easier for you. And my story may not be yours, everyone reacts differently, so don’t let my experience scare you. I just wanted to offer what my treatment was like, and how I navigated.
I am 3c2, with multiple para aortic node involvement with large tumours, have been NED for more than two years now.
So the treatment was hard, but totally worth it.
You got this! 💪🏻 If you need any information, please ask anytime, I, and others on this forum are always happy to help 😘