What happens after Caelyx, does anyone have a s... - My Ovacome

My Ovacome

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What happens after Caelyx, does anyone have a success story ?

Flute_7 profile image

Am due to start chemo next week, having carbo platinum and Caelyx due to relapse. Have been taking niraparib for approx a year, now stopped, has anyone got a success story after Caelyx treatment ?

44 Replies

I don’t have a story yet, Flute. However, like you I will soon start Carbo and Caelyx (Doxil in the US). I completed first line chemo in November 2020 and recurred in September 2021. Still considered platinum sensitive and thought I would be put on carbo/taxol again. Oncologist gave me that option, but he prefers carbo/Doxil so I decided to go with his preference. May this combination work well for us both. Best wishes from Louisiana,

Sashay

Flute_7 profile image
Flute_7 in reply to Sashay2020

Hello Sashay. Thank you for taking the time to reply, it’s out of our hands all we can do is remain positive and hope our consultants have made the right decisions with our treatment. Let’s hope through research the miracle cure will be found in our time. Wishing you all the best. Xx

I only had 4 Caelyx treatments due to Covid but 6 weeks later I started Olaparib. That was 17 months ago. Still feeling really well,CA125 is still 6.However i am BRCA+ve. Hope it all works out for you x

Flute_7 profile image
Flute_7 in reply to mrstadpole

Thank you for responding, that’s fantastic news, I hope you go from strength to strength, it gives me hope xx

I'm HGSE 3C OC Somatic BRCA1 HRD+. Carbo/caelyx(Doxil) worked great for me on 1st recurrence. Went on Olaparib after 2nd recurrence. Stayed NED for 19 months. Now on third recurrence in 7 years.

Flute_7 profile image
Flute_7 in reply to Tesla_7US

Hello, wow that’s so good. 7 years is quite something, I’m sorry that you have relapsed but you are clearly made of strong stuff, keep fighting and so will I. Xx

I've just started Carboplatin and caeleyx for fourth line treatment ,parp didn't work for me ,due my second infusion Monday ,found it easier than Carboplatin and taxol . I asked my oncologist what next ,he said it depends ,if caelyx does it's job and stabilised or reduced the cancer I will continue with just caelyx every four weeks as maintain ,if it doesn't work for me I'll be back on just taxol weekly ,I'm Brca negative ,but we all respond differently ,so your future regimen may be different to mine , I've heard good of results from caelyx and Carboplatin . Wishing you luck .Cheryl x

Good to hear from you, Cheryl. I have been thinking of you and hoping that you have been in better spirits. I hope carbo/Caelyx works well for you, too!Sashay

I'm a bit better ,thanks ,very up and down ,go for my second cycle tomorrow ,so going to talk to the nurse or Macmillan facilitator about how I feel ,my GP was useless really ,said they don't just dish out anti depressants and to get counciling ,but didn't offer it .Cheryl x

My first oncologist would not prescribe anti-anxiety medication, but my new oncologist does. It does help when I have a rough day. My GP prescribes antidepressants, but I think the one I am on is not working well anymore. Counseling is important, but it’s easy finding the right therapist. My new oncologist referred me to a psychologist who works exclusively with cancer patients. But I will have to hang in for a month until she can see me. I hope you will connect with a good therapist and get your meds sorted soon. 💐Sashay

Thank you .x

Just edited my response. I meant to say it is NOT easy easy finding the right therapist.

Hello, am on cycle 2 of carbo caelyx now for first recurrence. Will be rescanned at end of 6 cycles if they all go ahead. My ca 125 has dropped into normal range already so am hoping this is a good sign. Good luck on this regime xx

Flute_7 profile image
Flute_7 in reply to Laz66

Hello that’s fantastic that your CA125 has dropped within a normal range, that really does give me hope. Very best of luck and I hope your scan results will good when that time comes xx

Hi there, I have been on the same. I was on it for 6 cycles, 6 months. I had a scan a few weeks ago and the cancer has virtually gone. Fingers crossed it doesn’t become active too soon and I stay in remission,Good luck with your treatment 💕x

Flute_7 profile image
Flute_7 in reply to Lesinbeds

Hello, really, that’s great news, will you be given any maintenance medication ? Xx

Lesinbeds profile image
Lesinbeds in reply to Flute_7

Hi there, No, no maintenance drug. My consultant said to give my body a rest and to have a blood test in 3 months. They will see if my CA125 has changed! It is currently 12. Of course if I have any pain or concerns in the mean time I can contact my oncology team. I was on Niraparib for 5 months prior to having my last 6 months chemo. It didn’t seem to work for me and I had the reoccurrence. Fingers crossed my cancer behaves and doesn’t start up again too soon!! All I can do is hope! It is the not knowing but we all have to take one day at a time and enjoy life when we can.

The side effects wasn’t too bad on carboplatin and caelyx. I did wear the cold cap as I wasn’t sure if I would loose my hair. My skin got quite dry and mouth ulcers but I got no sickness, occasional bloating but that was mainly the first few days after treatment and taking the steroids.

I do hope you get on ok with the treatment. I’m here if you want to chat as I know what you are going through.

Take care and keep strong and positive xx

Hi. I had carbo caelyx for first recurrence. It shrank my tumors by 75 percent and then I went on Olaparib which got rid of them and has kept me ned for nineteen months so far. I have a somatic brca1 mutation and a PALB2 mutation. Good luck!🍀

Flute_7 profile image
Flute_7 in reply to delia2

Hello, wow 19 months free, keeping everything crossed for you, I hope I’m lucky enough to get similar, that’s great to hear xx

So after the operation in May of this year to remove tumour/cyst I was put on carbo/caelyx as I was within the time frame of initial diagnosis 18mths before the occurrence, it started well then hit a buffer with 2 weeks breaks and on my 4th round was laid low with ulcers etc, the problem was caelyx can start doing stuff after the initial dosage ie keep on producing side effects after 21 days, so oncologist and self had few options, drop the caelyx for rounds 5 and 6 and go on to maintence drugs, or continue with carboplatin for next 2 rounds at a higher dosage, went with the later and then should be on maintence meds, have not asked the name as I tend not to race ahead, one step or round at a time, hopefully am done with chemo before Christmas and not sure if there is a stop before maintence drug is given. All the best to you.

Flute_7 profile image
Flute_7 in reply to MarleyZ

Hello, sounds like you have had a tough time, thank you for taking the time to reply, wishing you every success with your journey xx

MarleyZ profile image
MarleyZ in reply to Flute_7

Tks flute. Always good to get some info about how these chemo work, was happy to get to 4th round but found it does hit hard with side effects not as hard as the initial chemo but when it does calyex does pack a punch ulcers were that for me lol.

Tesla_7US profile image
Tesla_7US in reply to MarleyZ

Olaparib must be started within 8 weeks of last chemo. Otherwise efficacy is diminished. There is a published peer reviewed study on this. If I have time, I'll hunt one down and post link.

Flute_7 profile image
Flute_7 in reply to Tesla_7US

Thank you. I was given Niraparib after first chemo was over last year. I started it in November and got a year, apparently the average is 9 months, but not the wonder drug I was led to believe although I am grateful for the extra 2/3 months. Don’t think I’ll be given any further PARPS when finished carboplatinum and Caelyx but would love to know if anyone has been given different / more PARPS ?

Tesla_7US profile image
Tesla_7US in reply to Flute_7

Have you had your actual tumor material tested for mutations? This is different from genetic blood testing which reveals only inherited mutations. Your actual tumor material will reveal acquired mutations. I am somatic (acquired, not hereditary) BRCA1 and HRD+. Certain mutations work extremely well to increase time to recurrence and new information is coming to light monthly. PARPS were not available here in US when I was diagnosed in 2015. Hope and help are on the way. Here's an article from Israel about a new drug for OC. "Generic, cancer-killing Israeli drug approved for marketing by FDA" : jpost.com/health-and-wellne...

MarleyZ profile image
MarleyZ in reply to Tesla_7US

Tks Telsa that woukd be great...am in the U.K last convo with onocology team they said new on market so not sure what med am getting but will let people know it may well be the same one as you mentioned, will be interesting to find out am not on any trial etc so really not sure about the maintence med selection.

Tesla_7US profile image
Tesla_7US in reply to MarleyZ

It is essential to find out whether you are HRD positive. It greatly increases chance of Olaparib working. Respected, peer review study has confirmed this. If I find it again, will post it.

MarleyZ profile image
MarleyZ in reply to Tesla_7US

Well had test for BRACA and was negative, sure the oncology team woukd have done the needful, they get enough blood each round and them some lol.

Tesla_7US profile image
Tesla_7US in reply to MarleyZ

Determining HRD is not a blood test. Can only be detected in tumor tissue test.

MarleyZ profile image
MarleyZ in reply to Tesla_7US

They probably have that info already haven't asked about it but may do on my next appt trip tks Telsa.

27-359 profile image
27-359 in reply to MarleyZ

I asked about this, but HRD testing is not routinely done in the UK. I had my operation done five years ago, so any bits of my tumour are long gone! I should think the testing should be done at the time of tumour removal.

Jenny

Tesla_7US profile image
Tesla_7US in reply to 27-359

In US tumor tissue is saved for future testing. Mine didn't get tested until 3 years after it was removed.

Sashay2020 profile image
Sashay2020 in reply to Tesla_7US

My debulking was in July 2020. Like you, a bit of tumor was saved and only now is the tumor (not just my blood) being tested for genetic markers including HRD. Sashay

MarleyZ profile image
MarleyZ in reply to 27-359

Had my first tumour removed in 2020 and the 2nd in May of 2021 on both occassions there was a ask by my surgeon on sample taking for research so they could have done that then.

Hi fluteI had second line chemo carboplatin and caeylx six treatments January not June mthis year it significantly reduced all my cancer from ovaries to spleen and liver. Consultant delighted with my scan now only on niraparib. I am stage 4b.. good luck

Flute_7 profile image
Flute_7 in reply to Iwillbeatit

Hello, that’s fantastic news, I hope you get on well with Niraparib. Keep me posted xx

Sorry should add it dropped my ca125 back down to 16 in June and it's still there.

Oh wow, that’s wonderful, that gives me hope !! I hope my CA125 drops to a similar level in time. It would be great to see it drop and stabilise. Good luck going forward xx

Hello

I was diagnosed HGOC stage 3C in March 2016, had debulking and then standard Carboplatin and Taxol, recurred in 2017 and had bowel resection and Carbo/ Caelyx. Started on Niraparib and have remained NED since then. I found the second regime a bit easier than frontline , especially as I didn’t lose my hair.

Good luck

Kay

I had Caelyx and carboplatin for my last treatment (it was my 3rd line treatment since diagnosis in 2007) finished the carbo/Caelyx 6 years ago and an still in remission with stable CA125. Best of luck with it hope it works and gives you a really good break

Sue

Flute_7 profile image
Flute_7 in reply to Sue-333

Hello that’s amazing, really encouraging, we’re you on a maintenance treatment as well ?

Sue-333 profile image
Sue-333 in reply to Flute_7

No I wasn't on any maintenance treatment but that is a possibility for the future if I need it and I am BRCA2 positive . I think that the carbo/Caelyx treatment just worked really well plus I stopped working and moved house to live near my daughter and her family and have a more relaxed lifestyle since then. I don't do anything special just stay positive and listen to my body; if it says rest for a few days that's what I do and it seems to help. I think of this as a chronic condition that I can live with having treatment here and there when it's needed. I feel well at the moment and that's what I focus on, here and now and not what might happen later on.I really wish you the best with this, do get in touch if you have any further questions x Sue

Recurrence after 3 years out of frontline. Had carbo / Caelyx and went back into ned and still there over a year later, currently on Olaparib (3c hgs). Hope that helps, Marian xx

Flute_7 profile image
Flute_7 in reply to MH500

Thank you yes, I’ll keep my fingers crossed. Good luck going forward xx

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