Any advice or tips on Carboplatin/Caelyx for first reoccurrence?
Sadly just found out I’ve had reoccurrence after 8 months NED after initial treatment for 3C non brca serous disease. Starting this chemo soon. Aiming to carry on working through it - have any of you done that? Any experience or advice re side effects? Not faced up to telling the kids yet (8 and 11) - the hardest part. Thanks in advance Teal Sisters. Jane x
Hello Jane i did 6 cycles of carbo/caelyx finished Dec 19 - worst side effect was fatigue. Compared to taxol it was very easy, no hair loss or neuropathy. We are all different but it was worth a go for me as it reduced my CA125 from 1080 to 151, your CA125 will initially rise but this is perfectly normal for caelyx. Good Luck
Thanks Lyn that’s really helpful. Glad it worked well for you. Jane x
Hi I had this last year. I mostly managed to work through although it was cumulative...so towards the end I did take a few days to sleep. I had very dry, peeling hands and feet (still do!) so lots of moisturiser. I used Aveeno I think it was skin repair one, which really relieved the ‘pain’
No hair loss, nausea or anything just fatigue and this skin thing. Got my CA125 down to 17, good luck xx
Thanks that’s very helpful x
Hi Jane,
I am half way through this regime! Just had no. 4 (yesterday).
Just had my half way scan, no improvement as yet & CA125 still up at 414, but slightly lower than last month. My Consultant assures me it sometimes happens like this....but I was disappointed! However, I press on - yes tiredness is the worst & minor skin rashes & spots - have used E45 for itchy skin & Aveeno in the shower & to moisturise.
Many ladies sail through Carbo/Caelyx....let’s hope that you will too Jane and that you will know when & how to tell your little one’s.
Do you have a Maggie’s Centre nearby?
Linda xx
Thanks Linda for sharing your experience and sorry to hear your CA125 hasn’t dropped so far. I’m being treated at Barts in London and use the Maggies there. Will let you know how I get on. Jane x
Hi Jane
I am going through this at the moment for 1st reoccurence (BRCA 2 +).I had huge problems after first chemo,blocked bowel,hospital admissions etc.Thankfully I am feeling okay now and had my 2nd chemo two weeks ago.
I was very encouraged by my ca125 results.Due to my problems I had a scan after 1st chemo and markers had gone from 462 to 160 which I was pleasantly surprised about.Next scan is due after chemo 3.
I have felt quite tired and skin is very dry.Good luck with this Jane.
Ann x
Thanks Ann was the bowel blockage due to the chemo causing constipation? Jane
Yes Jane they believe it was.I have now been given different drugs when I am having chemo to stop this.Bowel was very distended according to scan.
Ann x
Morning! I've had five cycles and so far so good! A bit of nausea and tiredness but still worked (only part time though). Stocked up on crunchy nut cornflakes, crumpets and ice lollies for the first few days after the infusion. Good luck.
My ca125 also rose after first infusion and then started to drop.
Bye for now, sticky3006 x
Thanks for replying. Glad to hear you’ve been able to work x
Hi Jane
I completed 6 Caelyx/Carbo last year for 1st recurrence. As some have said fatigue seems worse with this. I generally felt out of sorts for a week then like someone had flicked a switch I'd be back to normal. The neutrophils took a battering and the last 3 treatments were postponed for varying lengths of time which made it hard to plan anything. I had to accept a dose reduction for the last two. It brought the CA125 down to 24.
My daughter is 8. She knows what is happening with me every step of the way. With Caelyx she referred to me going to have the red devil due to its colour. Of course her biggest fear is the disease taking me away from her, but she prefers to know what is happening so we can fight it together. Children are often tougher than we think.
Good luck with the treatment.
Gentle hugs. Nicola x
Thanks Nicola encouraging to hear about your daughter and great to hear your CA125 is down x
Forgot to say my daughters are 12 and 16. They seem to be dealing with my recurrence but have both had some anxiety issues. I don’t know if that’s because of my diagnosis or their ages and doing GCSE’s etc. I think I’ve also been a bit emotional and tearful a few days after chemo x
Hi Jane. I too had Carbo/caelyx for 1st recurrence. I'm also High grade serous 3C non BRCA. I found it a v tough regime and after the 2nd infusion, my onc reduced the dose by 10%. Still tough, but bearable then for the duration. It gave me dreadful mouth ulcers and for one of them (side of my tongue), I had difficulty talking and I needed my food to be blended down for a week. I certainly couldn't have worked for about a week between each infusion and probably not at all. It gave me something like paper cuts on my hands, my hands turned a delicate shade of orange (only on the palms), hands so sore and weak it was difficult to lift up the kettle to make a cuppa. There was always one day in there where I could do nothing but sit on the sofa & watch TV - not even enough energy to read. However, I always knew where I was with it i.e. each time was identical: I knew when I had to shower as I wouldn't be able to again for a couple of days & I knew exactly when I would next be able to shower. The first day after the infusion I'd be absolutely fine except that I had hot, pink cheeks - I could do as much work that day as I wanted. The very best thing about it was that it WORKED. It put me straight into remission and I'm still there after 5.5 years - with major help from Avastin as a maintenance drug. Tough it was but I'd do it all again. Best wishes. Pauline.
Gosh that’s so helpful to hear Pauline - lovely to hear you’re doing well and useful to know how tough it can be. Did you go on Avastin straight after the chemo? Did anything help the mouth ulcers? X
Hi again Jane. I was in the right place at the right time to get onto an indefinite Avastin trial at the start of the chemo, so I had it alongside the chemo and it continued after and is still on-going as long as my CA125, urine, blood pressure and side effects all stay within bounds, which they have done - just - but after 5.5 years, all those things are pushing at the boundaries.
I credit Caelyx with getting me into remission and Avastin with keeping me there. I feel very fortunate.
As far as the mouth ulcers are concerned, no, I found nothing that would help. My hubby brought home just about everything from the pharmacy. One was a clay-like substance that you coated the ulcer with - but logic will tell you that the moisture in your mouth will dissolve it away - and so it did ! So ultimately, I used salt water every day. I don't think it helped but at least I felt I was doing something and it cost nothing.
Thanks Pauline. Sadly don’t think Avastin will be available to me here but certainly going to try. So glad you are doing well x
Hi Jane--I know we all react differently but this was an easier combination for me. My pattern was usually that I felt fine on infusion day and the day after (steroids no doubt) then I would need a day or two on my couch (just felt "yucky" with chemo brain) then came out of it pretty quickly after that, so when I had the infusions on Friday, Sunday and Monday were not the best but after that I felt back to normal, with very little fatigue. I did get to NED on the regimen. Wishing you luck and follow the great advice you're getting about keeping hands and feet moisturized!
Hi Jane, Feeling better on this combination than Carbo platin /paclitaxel. I clean my teeth & use a water pik after every meal followed by hospital mouth wash & so far, great. I use Bio Oil on body op,scars etc & overall, so far ok. Feel tired but not desperately so. Walk daily & eat carefully. We’re all different & I wish you well, children understand & like to be told what’s happening with mummy. X
I had my 1st Carbo/Caelyx for 1st recurrence on Weds. I’ve felt a bit rough to be honest. Nausea, constipation and absolutely exhausted. I’m really hoping it will get easier, I thought it would be a walk in the park after Carbo/Taxol 3 years ago x
Sorry to hear it’s tough - hopefully that means it’s working? Are you still on the COC protocol? Jane x
Hi Jane. I found I tolerated the carbo/caelyx regime very well. 2nd week of each cycle I was so tired but I picked up after that. Because I had sepsis and other infections the treatment kept getting interrupted but my CA 125 went from 350 to 80 so it was successful. I'm now on daily Niraparib. It took months to get the dose right but hopefully it's now doing the job. Lots of luck
Hi Jane. For my first recurrence I had carb/taxol. The second time around it was a little harder for me. I work full time but I did have to take 2-3 days after chemo to rest. However, I didn’t have young children. Just take it one day at a time. Maybe this treatment will do the trick. Sending you love and positive energy. You will get through this.
Xox
Marisa
Thanks so much Marisa x
HI. I recurred on a similar timescale and went on to the same chemo. Compared to carbo/taxol it was a doddle. I carried on working for several months until at the recommendation from my employer's Occupational Health doctor, I stopped. I found concentration difficult - which could easily have been chemo fuzz from the frontline chemo, but it made the type of work I was doing hard because I needed to have a high degree of accuracy. It didn't impact life outside work significantly though - just found I tired quite easily. My daughter got married while I was on chemo, and I was able to fully take part in the preparations and the big day and beyond. My only restrictions were that I had to get a larger jacket for the day to accomodate my picc line and had completely gone off alcohol, so didn't appreciate the fizz. Hope all goes well for you.
Thanks Numi. How are you doing now? Jane x
Hi Jane
My experiences were similar to those who've replied already - I had same drugs for first recurrence. Tiredness was tough but my measure is walking my dog which I did for most of the 6 months of treatment. My neutrophils took a battering, kept having delays in treatment so it took longer by a few weeks in the end and I had to get used to gearing up for chemo only to be sent home for a week.
My routine on tired days was - get up with the family. Back to bed for a short nap about 10ish. Get on with life, then a big sleep after lunch so ready for action again later. Much like being a baby!
My kids are a little older (18, 16, 11 now) and I did tell them from the outset. But more recently, I took my younger two (girls) into one of my check up appointments, the difference it made to them was incredible. Just to see the routine of waiting, blood tests, waiting, seeing the doctor for 10mins when you're there for about 3-4 hours, it was a huge benefit. Wouldn't be for everyone I'm sure, but it just took the mystique away and normalised it.
Good luck with the chemo and hope it does the job
Wonnie x
Thanks so much Wonnie that’s very useful and good to know your kids appreciated being more involved. Are you on any treatment now? Jane x
Yes - I've been on Olaparib for a year (I'm BRCA 1). Chemo finished Jan 2019.
Hi.
I just want to say that i’m really sorry to hear you’ve had a recurrence. I hope you’re doing ok . I had a recurrence in late 2018 after nearly two years remission. i haven’t any experience Caelyx. i was put on taxol/ carboplatin again and i’m currently on avastin as maintenance.
Take care ,
D
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