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

[Flute_7]

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 ?

[Sashay2020]

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 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

[mrstadpole]

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 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

[Tesla_7US]

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 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

[fendweller]

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

[Sashay2020 in reply to fendweller]

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

[fendweller in reply to Sashay2020]

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

[Sashay2020 in reply to fendweller]

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 not 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

[fendweller in reply to Sashay2020]

Thank you .x

[Sashay2020 in reply to fendweller]

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

[Laz66]

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 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

[organicinna in reply to Laz66]

Laz hello. How are you? I posted my question yesterday about Caelyx but it seems to not get trough. Been told yesterday that am going on this drug 6 month after carbo platin and first recurrence. Niraparib doesn't work. Only this Cael drug not combination.... Do we loose our hair again or not? Because they said I will not ? but drug sites saying otherwise. And how is side effects? My CA125 is only 19 and they said tumor is 11 mm but cant be surgically removed yet

[Laz66 in reply to organicinna]

Hi, am ok thanks..I lost a tiny amount of hair on carbo/ caelyx, very slight thinning only. I struggled on this combination but my scan after 4 cycles was clear and ca 125 normal range. We decided to only have carbo for cycle 5 and then stop. My bloods are all over the place so hoping they go back to normal now I am off chemo . I asked for second opinion for surgery and have done same again for my next step. Keep me posted xx

[Lesinbeds]

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 in reply to Lesinbeds]

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

[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

[organicinna in reply to Lesinbeds]

Hi darling. Just desperately reading reading all posts about Caelyx. Just been told yesterday about my first recurrence after 6 month finishing Carbo platin/ Niraparib doesn't work/ They said only Caelyx ( ???) for 6 sycles and that I shouldn't loose my just freshly grown hair....??? Am 4C braca negative 60 years old girl......My CA125 is 19 and tumor is 11 mm and other nodes elsewhere...still in shock and panic ((

[organicinna in reply to Lesinbeds]

Oh my god! On Caelyx? Am just starting it in 2 weeks and was worried that its not shrinking but just controlling....Need positive feeds (((( ))))))

[delia2]

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 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

[MarleyZ]

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 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 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 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 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 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 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 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 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 in reply to MarleyZ]

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

[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 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 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 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 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.

[Iwillbeatit]

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 in reply to Iwillbeatit]

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

[Iwillbeatit]

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

[Flute_7]

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

[K95m]

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

[Sue-333]

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 in reply to Sue-333]

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

[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

[MH500]

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 in reply to MH500]

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

[organicinna]

Hi Flute. Posted my post yesterday about Caelyx but it seems to disappeared. Wanted to ask people about this pink drug )) Just been told yesterday that i recurred 6 month after first line carboplatin and now they stopping my Niraparib and in 2 weeks i go on Caelyx 6 cycles once a month (( Its only Caelyx no other drugs.... £ of them talked to me yesterday but i was sin such shock that can not remember much. They also said i wont loose hair again on Caelyx but all drugs sites saying otherwise.....

[Flute_7 in reply to organicinna]

Hello Organicinna, I am so sorry to hear your news. It is a massive shock to learn that the cancer has returned and the wonder drug Niraparib is no longer working , like you everything went over my head and it took a number of conversations before it registered that I was going back on treatment. I have just had my 4th cycle of carboplatin and Caelyx, treatment has been pushed out by a week twice due to low neutrophils. First time injections were increased with Caelyx reduced by 20% and more recently injections increased to 7 with Carboplatin reduced slightly. Hopefully getting the levels right will allow the 5th and 6th cycle to go ahead without being pushed out .

Everyone is different and whilst there is a chance of hair loss, in the main I was told this is unlikely. There is a possibility of thinning or perhaps hair being a little patchy.

For me, I haven’t lost my hair so far and it hasn’t thinned or become patchy. I wasn’t offered the cold cap as the consultant was as confident as could be that I wouldn’t lose my hair.

As for side effects, I found the first month the worst with sickness lasting about 1.5 weeks, thereafter with each cycle I am finding it lasts approx 4/5 days max.

I get tired during that time but still able to work and carry on with my normal day, I understand the tiredness is down to lack of sleep as a result of the sickness tablets some of which are steroids.

My mouth was a little sore in the early days but I was prescribed a mouth wash which has helped and I use a cream bought over the counter for cuts in the corner of my lip, but to be honest it’s a small price to pay as long as the chemo does what it is designed to do.

I’m wishing you every success with your treatment and hope your side effects, like mine are not too bad.

Please keep me up to date with how things are going for you and please feel free to ask as many questions as you would like to ask. If I can’t answer I am sure there will be someone on this forum who can help.

All the very best xx🍀🍀🤞🏼🤞🏼

[organicinna]

Thank you so much Flute. So you given combination of carboplatin and Caelyx ? And they definitely never mention carboplatin to me only Caelyx.... Thats why after reading that most people giving it in combination I was curious why only Caelyx to me? May be I was so shocked and tired yesterday that i missed something? Are you platinum sensitive?She also said they most likely to change Caelyx after for 6 maximum 8 month because it doesn not work longer than that. Which makes me sad that i might be no future remission? ((