I’ll be starting carbo/caelyx on Monday 1st recurrence , any tips. I’m a bit nervous even though I’ve been on carbo/taxol and niraparib . Had a tough time with it but don’t know what to expect for carbo/caelyx. I hear different experiences from everyone.
On another note, has anyone flew within or out of their own country during chemo cycles where there’s 2 or 3 weeks of feeling good? Just wondering if anyone did travel.
When I was on carbo/taxol my onc suggested I should be careful to not get sick (esp around large crowds) in between cycles as our white blood cells are low from day 7 to 15 of each cycle . Just curious if u were told the same.
Peg
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Hey Pianoanddisco, I'm two weeks away from round 5 of this regime. I too had the heady cocktail of carbo taxol, chased by 2 years of Olaparib.
Carbo + taxol felt like i'd been lightly steamrollered. My bones ached. And of course, i lost my hair.
Olaparib fatigue was hard and the joint had me hobbling by the end. Need a couple of blood transfusions and a dose reduction. Some light nausea.
This new regime. Is easier. No steamroller (bone pain). But i'm wiped out longer like 10 days or so. Very sweaty. Especially at night. Face and skin tender and sore for a few days after. Some mild blistering and spot of cellulitis. Nausea was hard after the first session, I switched up the meds 2nd round. And the usual advice to never trust a fart when you're on chemo. But the last two weeks I feel fine... for being on chemo.
You'll still need to be careful about catching covid/flu/noro as all chemo depresses your immune system. I have managed some staycations. Driven up to a 2 / 3 hours in the latter half of chemo cycles.
thanks so much for sharing your experience DianaPrince. Im glad this carbo/caelyx regime was easier for u.
I wished I joined this forum much earlier because when I was first diagnosed in Feb 2023 I was at a lost (no one to turn to) let alone shocked I didn’t know what to expect and had lots of setbacks . So again thank u and everyone for sharing their stories ❤️. It gives us hope sometimes challenges but we are all here for each other❤️.
Yes I agree chemo does mess up your immune system but hopefully this regime will allow me to go on mini staycations 🤞🏻but yes I still need to be careful around people who are sick.
I had carbo/caelyx for my 1st recurrance. After 6 treatments my ca125 was 6.
As you said side effects can vary, but for me the one that affected me most wasitchy dry skin on lower legs and feet. To combat this I used e45 to begin and also flexitol. However I then tried L’occitane foot balm which really worked for me. (It’s not cheap but worked for me) I live alone so I put it on at night and slept in socks. I also got mouth ulcers so my oncology consultant prescribed a mouth wash which really helped. Thankfully I did not lose my hair.
Whilst on caelyx I did a walking trip to France with some girl friends - (amazing)
After the caelyx I was on Niraparib for a year until it stopped working. I then had gemcitabine which made me extremely tired and I lost my hair, I am currently on watch and wait as I feel well but it has spread to my liver so I expect to be b k on treatment soon. Best wishes Katy 🙏
Thanks Katy I appreciate you sharing your experience. U really helped soothe my anxiety. I agree everyone’s side effects can vary. Some lose their hair some do not.
Im glad u were able to go to France wow ! Good for u!
I’m sorry Niraparib didn’t work for u either. I too was told I have a small lesion on my liver.
I’ve done my first cycle of this which hasn’t been too bad actually. I have drunk lots of water and also washed my mouth out after each meal, used my normal mouthwash twice a day too - corsodyl- and the day I felt mouth ulcers might be coming I drank lots of water, ate blueberries and blackberries from the freezer and no mouth ulcers! I have flaky skin on one finger and back of heels / used Udderly smooth cream twice a day from day 1 but not prevented it. Also flexitol. I needed a plain lip balm mid cycle so I’d stock up on that. Discovered most vulnerable bit is days seven to fourteen. I’m hoping there are many positive responses to your post as I’m interested in positivity! I think key thing is plenty of water. Best wishes.
Thanks for the great advices, I will be prepared this time but mind u everyone’s side effects can vary but I’m still glad u shared yours. I love blue and blackberries I try to eat as much as I can , I do raspberries too and put in my smoothies. I’m trying to drink more water too. I’m glad you were able to cope with this regime.
Yes I know when I went through carbo taxol and the hard days were 7 to 14 days where my platelets were extremely low. I’m assuming this regime is no different.
Hi dear, unfortunately I wasn’t lucky with this combination after 3 treatments I will need to switch to weekly taxol / carbo. I developed horrible digestion issues, my bowels are filled with air and can’t eat normally. So my piece of advice, don’t allow throwing up for too long, watch for your belly. I hope you will have positive experience as the rest 🙏
Hi Peg, I was on this regime actually a bit of light fatigue but no other side effects I chewed ice during the infusion to avoid mouth sores which I didn't get, also put udder cream (Amazon) on hands and feet no scent absorbed quickly I flew with no problem used a K95 mask on the plane did fine. My blood counts were normal I also took vitamin B6 which my onc advised me to take for side effects from caelyx in my case it worked. Wishing you the best
Thank u so much Saintgermain for the great advices . I’m going to make sure I have ice nearby. I heard about the udder cream.
I’m glad u were able to fly…good to know ... I’m hoping the same while I feel good during the last 2 weeks.
I’m glad your blood counts were normal and strangely enough your onc advised B6 it sounds like u were able to somehow cope with this regime. I’ll talk to my onc to see if I can take B6 if I can.
I’ve traveled abroad while on chemo. I’d wear a mask in the airport and on the plane. Since this chemo has four week cycles the last two weeks you usually feel okay. My main blood issue was platelets rather than white cells so I wasn’t too worried about my immunity but I did catch a virus from my grandchildren.
Good to know you were able to travel in between chemo. Yes I heard last 2 weeks of this regime is where most of us feel good. And you r right it’s the white blood that we have to be worried about when we r around sick people. So true It’s always the little kiddies we catch from lol
I’ve just had my 4th lot of this chemo combination and feel very lucky that life has carried on as normal while on the treatment. I’ve continued to work ( not full time) and gone swimming. My scan after 3rd chemo showed positive results and my team and I are happy!
As for travelling abroad in between I’ve thought about this but my gut is telling me not to push my luck if that makes sense. So I’ve booked two holidays in January when treatment should’ve done and I’ll be awaiting the next plan for this journey we are all on.
I just had my first round on Thursday. Got Carbo/doxil, which is the name in the U.S. I also had Keytruda an immunotherapy along with it. Not too bad the first 2 days. Today I’m very fatigued, sweaty and slight nausea. The nausea meds are helping. Drinking lots of fluids. I can say this is not as bad as Carbo/Taxol. This is my first recurrence as well. I am just trying to get on with my daily routine. Hang in there we got this! Xx
hi I’ve had this combo twice and for me it wasn’t too bad. The worse thing was very dry, peeling, painful hands but 2nd time round I was ready for it with lots of Aveeno skin relief cream (the blue one)
I didn’t take anti sickness (I don’t like them!) but had the very occasional Gingin sweet to suck (ginger sweets from H&B/Amazon)
Didn’t lose my hair, but it did change a bit, worked through it just taking a few days in the first week just to chill. Lots of water and a daily walk also helped if you can!
I'm glad you didn't lose your hair unlike carbo/taxol. Thanks for the tips I will stock up on Aveeno if need be. I agree, lots of water and daily walks. Thanks for sharing.
I was told to avoid potential sources of infection from day 7 to day 14 but to be cautious the rest of the time too (e.g. don't sit next to someone who's streaming with cold). I wasn't advised not to fly but I couldn't have managed it, on top of chemo and working part time (and I was only 48). I did however fly about 5 weeks after my last chemo (London to N. Germany) and my oncologist was OK with it. I had a wonderful time and very glad I did it!
Good to know SopSinger...that's what the oncol team is saying to be careful around the sick during that time period. I'm glad you were able to fly after the last chemo cycle. That's what I'm hoping to do too, just go on a long vacation afterwards. Thanks for the tips!
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after 3 treatments I will need to switch to weekly taxol / carbo. I developed horrible digestion issues, my bowels are filled with air and can’t eat normally. So my piece of advice, don’t allow throwing up for too long, watch for your belly. I hope you will have positive experience as the rest 🙏
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