First recurrence

[ElayneZ]

Hi all - i finished chemo 11/18 - Carbo and taxol. My CA125 has been under 8 until a few months ago. It’s been doubling monthly since and now is at 84. Had ct scan last week. it was confirmed today that I will need to do chemo again. Carbo and Doxil every three weeks. Wondering if any that had this combo will share experience with me. I live alone and with covid situation - I’m not sure about hiring help if needed. How were the side effects for you? Could you have done it on your own? Thank you! I send blessings to each of you!

[Lyndy]

Hello, sorry to hear you have to have chemo again. I am just starting second line too. I have registered as high risk with the government Covid response and have been contacted by the local authority to find out what my needs are. Also got priority slot for supermarket delivery. So I would start with that and then add anything else you are going to need xx

[ElayneZ in reply to Lyndy]

Thank you. And best of luck to you with treatment! What is your chemo “cocktail” for your recurrence?

[Lyndy in reply to ElayneZ]

Carboplatin as single agent as I am BRCA I positive x

[Jane420]

I’m having right Carbo/Doxil right now for 1st recurrence . I’ve just done 1 infusion and I’m finding it much easier than Carbo/Taxol . I’ve only had one , so I’m sure it will be cumulative but so far I don’t feel like I’m on chemo. I go on May 20th for my 2nd infusion .

[ElayneZ in reply to Jane420]

Hi Jane - checking in to see how you are doing on the Carbo/Doxil? I had my first C/D infusion last Tues. I feel wiped out - perhaps because of coming off the steroids. I did 18 weeks Carbo/taxol for frontline 2 years ago. Feeling thankful this chemo will be every 28 days. Positive thoughts you are doing well!!

[Jane420 in reply to ElayneZ]

It’s so nice to hear from you . I had my 3rd infusion June 18th . I’m real hyper for 2 to 3 days after each infusion and then I’m so wiped out for about 5 days . Then I feel like myself . After this last infusion I did get a couple of blisters on my feet . Using all the lotions. Next week Dr. Want to do a cat scan . He wants to see what is happening halfway through . My Ca 125 was 9.9 last check 😊😊😊 we are on the same timeline I believe , November 2017 diagnosed. Take care my friend

[ElayneZ in reply to Jane420]

Thank you! Best thoughts for your upcoming ct scan. It sounds like you are doing quite well with the C/D infusions! Wonderful to be 1/2 way through! I’ve had the first C/D last week and have sure felt wiped out past few days. But im a bit better today. constipation is an issue so I’m drinking smooth move tea and taking two Colace daily. Wondering if MiraLax would be better? I do lotion up my feet and then put on socks to give it a chance to absorb. Again best positive thoughts to you Jane!! Elayne

[ElayneZ]

Thank you so much for your reply! The plan is I will start this combo in about 6 weeks. Please know I hope it continues to go well for you. Blessings!!

[LittleMissStubborn]

I had Carbo/Doxil aka Caelyx for my first recurrence starting March 2019. I started off well but it took until October to complete the six cycles as the neutrophils take quite a pounding. It's frustrating as you have a date for chemo but then the bloods come back and it has to be delayed. One delay went on for weeks! As the immune system is so compromised I would try to arrange food deliveries and go from there. I used to become very tired and have naps during the day, but could still manage a little light housework.

I'm sorry you are going through this at this most terrible time. Good luck with the treatment.

[ElayneZ in reply to LittleMissStubborn]

Thank you! I had to delay chemo a couple times during frontline due to low blood count so now know may happen with Doxil too. And the fatigue too - that was a definite side effect from the weekly taxol. Thank you again for sharing. I hope you are doing well! Blessings!

[BellmoreBelle]

It's tolerable, I'm doing it by myself, I'm through #5. I am very fatigued for the first week but after that pretty normal. Good luck! Carol

[ElayneZ in reply to BellmoreBelle]

Thank you Carol. I remember the fatigue with the taxol increased due to chemo being cumulative - I rested and napped a lot. I hope you can too! That’s great you are through #5! Thanks again. Blessings!

[JustKBO]

I found it easier than Carbo Taxol but my neutrophils did take a bashing by the 4th cycle and I needed a transfusion. I also got horrid mouth ulcers. It’s doable. Good luck.

[ElayneZ in reply to JustKBO]

Thank you. Good to read C/D was easier than C&T. I too needed transfusion towards the end of the 18 weekly C&T chemo. Hoping treatment every 3rd week will give bloods a chance to be closer to normal. Hope you are doing well. Thank you again for sharing! Blessings!

[delia2]

Hi. I finished carbo caelyx/doxil for first recurrence two months ago. I found it easier than carbo taxol. I was wiped out for about five days in the first week following chemo but then quite well for three weeks. I did get low platelets but they would bounce back by the time for the next chemo. However my oncologist did lower the dosage because of that. I kept ice chips in my mouth and on my hands and feet during chemo. I still got mouth sores twice. Rinsing your mouth with warm salt water during the first week helps. Also use a heavy duty moisturizer on hands and feet-especially with all this hand washing! I wish you the best!

[ElayneZ in reply to delia2]

Thank you! Encouraging to read its even a bit easier than C&T. The fatigue definitely was an issue with the taxol and sounds likely to be with the Doxil. Thank you for the tips to rinse with warm salt water and moisturize hands and feet! And for the reminder to ice during chemo! Hope you are doing well! Blessings!

[Hidden]

Hi Elayne. I too had carbo/caelyx (doxil) for 1st recurrence. I found caelyx to be a tough drug. After my 2nd dose, my onc reduced the dose by 10%. I coped after that but it was never easy. BUT it was reliably the same each time, so it was easy to plan my time around it: Day 1 following infusion day, I was absolutely fine, just had hot & red cheeks but had all the energy I needed. Day 2, I would begin to flag, so I had a shower that day as I knew I wouldn't be able to for the next couple of days. Day 3 was the worst - I could do nothing but watch TV. Day 4 not much better but I had the strength to read. Day 5 I could feel my strength returning & by the afternoon, I could shower. It was all up from there. This is 5.5 years ago and I've been in remission since. I was on avastin too (not a chemo drug). I credit Caelyx with my excellent remission and Avastin with keeping me there all this time.

Constipation was a problem for the 1st week, so be prepared for that. Mouth ulcers were a problem - I never found that anything helped, but Delia, above, says that warm salt water worked for her. Sore hands are also a problem and really, for me, lots more. But the most important thing about Caelyx is that it's easy to work out a routine and it usually gives an effective remission - and that's what it's all about!! So get a few meals prepared and good luck. It affects us all differently anyway, so you may be OK with it. You'll be fine. Best wishes. Pauline.

[ElayneZ in reply to Hidden]

Thank you Pauline for this information! First of all congratulations on over 5 years in remission! That is wonderful!

Did you receive avastin with C&D? My onc mentioned that - as well as possibly PARP maintenance afterwards.

Did you have Taxol frontline? Lost my hair. Fatigue was big side effect for me and sounds like Doxil was for you.

I really appreciate your sharing. Again thank you. Bless you!

[Hidden in reply to ElayneZ]

Hi again Elayne. Sorry for the delay in replying. Yes, I had Avastin along with the chemo. (Carbo/caelyx). So the chemo was every 4 weeks and I'd have Avastin to follow (at the same session). Then I'd go back 2 weeks later and have just the avastin infusion. Honestly, I can't recommend Avastin enough. It's been an absolute god-send for me. Having said that, I know that not everyone is as fortunate with it. I've read a lot of side effects on here but the only ones for me have been sneezing and a runny nose (mostly in the morning & when I eat) and also raised blood pressure for which I need medication. It's quite a while before your BP starts to rise, then it's a slow but constant rise. Most people have these 2 side effects but I'm lucky that's where they've ended for me. Avastin's not like a chemo - it doesn't make you ill. It's been my maintenance drug ever since. It just manages to keep my slow-growing tumours at bay. My Ca125 is currently 40 - it see-saws around there.

Now, you ask about my initial chemo & that's the cause of my delay in replying. Had to dig out my first chemo diary. Here 'tis : Following first op, I had carbo/taxol for 3 months, then a second op, then taxol/cisplatin for a further 3 months. Then straight into remission. Glad to have those eye brows grow back. With caelyx (doxil) you only lose 10% of your hair but no one but you will notice. I have fine hair but even for me, no one else noticed. Best wishes. Pauline.

[ElayneZ in reply to Hidden]

Thank you Pauline for your reply. My dr mentioned Avastin as a possibility given with Carbo/caelyx. So I will keep open to it. Glad to read hair loss is more like 10% and thinning - unlike with Taxol. (The missing eyebrows were greatly missed!) I’m still a few weeks to starting - I need to get a port again. I had it removed in Dec - a year after frontline finished. Thank you again for sharing! I love knowing you are more than 5 years in remission! Blessings!!

[Hidden]

I think that nothing is as bad as the Taxol. I found my first recurrence very upsetting, though. I’m sure that every recurrence is probably the same. It’s awful to realise that it’s back and you’ve to lose another six months to treatment. I’ve lived alone during all my treatments but I had a lot of help from family & friends. Be as good to yourself as you possibly can. If you can afford to have help and you’d like help then don’t hesitate to get it. I had Carbo/Gem every three weeks. I was fine for weeks two & three during the first few months. It gets worse but it’s all doable. The best of luck with it.

🤗🤗🤗🤗🤗🤗🤗 Anne.

[ElayneZ in reply to Hidden]

Thank you Anne! I’m hoping chemo every 3 weeks is “easier” than the frontline weekly taxol. Closest family live 100 miles from me - but I was blessed to have some family member with me each week for at least a few days for 18 weeks during chemo. I do remember it was cumulative - the fatigue was great and too the blood level drop. Thank you again! Good thoughts to you!

[Kkaren]

Hi Elayne I am due my third Carbo/Caelyx next week. Thankfully one takes an hour and the other half an hour so I’m and out fairly quick compared to about six or seven hours for the Carbo/taxol the first time.

On the whole it is not bad. My main side effect is constipation which I suffered from anyway. After a few stressful episodes I now go to bed each night with a bowl of prunes! I also had mouth ulcers which again I have suffered with for years. I think it is hard during lockdown as a lot of folk are just sitting around and for me that just seems the easiest option. I have a garden but the weathers not been that great in Scotland. I have my husband at home but he is also trying to not go out just to be on the safe side. We are doing home delivery shopping which is great. I also registered for a priority slot but am still waiting. Not sure where you stay but a lot of our little local shops are doing home deliveries so that may be worth looking at.

I hope things go well for you Elayne.

Karen

[ElayneZ in reply to Kkaren]

Thank you Karen. Congratulations on being so close to your 3rd Carbo/Caelyx! Have a pet scan scheduled in a couple weeks - and then have to get my port again - I had it removed in December - one year after finishing frontline - hoping I wasn’t going to need it. So my chemo will likely start in about a month. Have you tried Smooth Move tea? I keep prunes handy too but have found the tea helpful when needed. I live in California. Grocery delivery is an option here too so I will remember to if needed. Thank you for your reply and kind words. I truly hope all continues to go well for you too! Blessings!

[Kkaren]

Hi again Elayne. I am not sure I have seen that tea. Will have a look online. So much to think about sometimes your brain hurts! Hope things go well with your chemo. Take care x

[Heidi_Cbus]

Hi Elayne & others. I just stumbled across your post about your recurrence & treatment with carboplatin & doxil. I just started this cocktail on 4/5/21. First diagnosis was stage 2 in 2017 after hysterectomy/oophorectomy surgery, which was followed by 6 rounds of chemo every 21 days (carboplatin & taxol). Was glad to have no evidence of disease for 3 years, but it is back as of Feb 2021. Very disappointing, but ready to fight it again. I only know of one other lady in my area (Columbus, Ohio) that has had the same recurrence chemo treatment. She finished hers not long ago & had no major side effects. I'm hoping for the same. I had some nausea by the 4th/5th day, that I did not have the first time I had chemo (although I was only able to tolerate 3 rounds of taxol due to neuropathy). I will have 3 rounds of C&D & then a scan to see how it is working. I assume you are now complete with your treatment? Are you now on any sort of maintenance drug? Also, do you know what type of ovarian cancer you had? Mine is 'clear cell'.

[ElayneZ in reply to Heidi_Cbus]

Hi - so sorry to read you recurred but I believe you will do well on the doxil & carbo cocktail. I stayed on it once a month for 9 months - until my CA125 plateaued at 8. I didn’t have nausea but I did take Zofran for two days after each chemo. I didn’t have major side effects. I did apply moisturizer few times a day as was suggested - as Doxil can cause skin sores. I did have mouth sores 2nd week after each chemo for about a week - used salt and baking soda - and a mouthwash. I found daily Miralax and one Colace helped with constipation. My white and red blood counts did decrease but came back up enough for each treatment. I will be starting Olaparib this month. Have used this “off” time to get both covid vaccines and take care of dental issues and having blood counts return to normal range. (I was dx May 2018 with Stage 3 - epithelial OC.) Let me know if you have other questions. I’m happy to share! Blessings!

[Lind58]

Wishing you the best 💕