Recurrence : I’ve just found out I’m definitely... - My Ovacome

My Ovacome

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Recurrence

Purplerose12 profile image
26 Replies

I’ve just found out I’m definitely facing my first recurrence. Diagnosed in Aug 2019 interval debulking surgery then 2 years on Olaparb finished May this year.

Oncologist has said I’m starting chemo in 4 weeks but can not have any maintenance after because I’ve already had a parp.

Going in tomorrow to get drain in my chest so I don’t have to keep going to hospital to get it drained.

The chemo this time is Carbo/Caelyx any advice on this combo x

26 Replies
Lyndy2 profile image
Lyndy2

I am sorry to hear that Purplerose12 but it’s sometimes easier when you have a plan in place. Good luck xx

Purplerose12 profile image
Purplerose12 in reply to Lyndy2

Yes I feel better knowing I’ve got treatment plan x

Caleda4 profile image
Caleda4

Sorry to hear that you have a recurrence.Somehow I think it is more of a shock that when you are first diagnosed. I finished carbo /caelyx approx. 4 weeks ago,which was for a second recurrence. I found it relatively easy, up until the 6th cycle which made me really tired,but i am feeling better now.

You will need to put cream on sole of feet and also on your hands,as the skin may come off. I never had this side effect. Caelyx is renowned for giving you mouth ulcers which i did have so i used salt water to rinse the mouth with,and sometimes a mouthwash. I also tried a gel. ,but towards the end i used a local honey which you can put on several times a day and that cleared it up. The good thing is i did not lose my hair. I was given filgastrim injections,which i did myself. They should prevent the white blood cells dropping. I had a parp after first recurrence which worked to a degree for 14 months,so like you i cannot have another one. I am on watch and wait for 3months then i will have a further scan. I could have letrozole for maintenance, you do have to be estrogen positive for this.

I wish you well with this,take care.x

Purplerose12 profile image
Purplerose12 in reply to Caleda4

Thanks for your advice..x

NewtonEmma1900 profile image
NewtonEmma1900

I have just had my 2nd dose of carbo/caelyx; previously carbo /taxol /avastin which sadly did not work towards the end. I am still getting used to it but so far the worst part is constipation . On advice from the nurse I took laxatives in advance this time but it has not worked. I did have a few mouth ulcers too. I was not particularly tired the first time but too early to judge on this round, however my platelets fell and they had to ask permission to go ahead with treatment. I too have filagstrim injections and thus far the new treatment has not affected my newly growing hair. Good luck, let’s hope we both have a positive outcome. Katy🙏

Purplerose12 profile image
Purplerose12 in reply to NewtonEmma1900

Thanks hope the rest of your treatment goes well x

paulamma1 profile image
paulamma1 in reply to NewtonEmma1900

hi, I also had horrendous constipation and eventually figured out I needed to take MiraLAX (Macrogol in the uk, I believe) until my bowels moved. I kept a journal with all medication and would set a timer for nex dose, just kept on taking it till it worked. One dose doesn’t cut it. I figured it out on my last chemo treatment 🤷‍♀️

Wishing you all the best outcomes xx

NewtonEmma1900 profile image
NewtonEmma1900 in reply to paulamma1

I do have this but obviously have not taken enough. Thank you so much. 🤞🙏

Lobster2 profile image
Lobster2 in reply to NewtonEmma1900

I don't take this combo of chemo but I've struggled with constipation with all my treatments. I take a stool softener a.m. and p.m. and drink a glass of juice with Miralax every evening and that seems to work for me. If it doesn't, add Miralax to your routine in the a.m. too. It's not a laxative so you don't develop a dependency on it. Good luck. Constipation is no fun when it gets too bad.

Horsesrock profile image
Horsesrock in reply to NewtonEmma1900

hi Katy, I’m interested to read you were given carbo/caelyx after carbo/taxol/avastin. I am on low dose taxol and avastin (2nd line) but CA125 is rocketing although scans are pretty clear of tumour but lots of fluid (pleura). I am seeing my onc next week - he previously mentioned the Rotterdam regime but I’d like to go armed with info on a few different combo’s … I’m so tired of weekly treatment. I think they will not suggest carboplatin as I didn’t get my ca125 down below 400 after 1st line carbo/taxol. Was that discussed with you? Any words of wisdom you can pass on?! Thanks Charlotte

NewtonEmma1900 profile image
NewtonEmma1900 in reply to Horsesrock

I don’t know that I am in any way wise! I was initially doing very well after 4 rounds of carbo/taxol and avastin, my ca 125 was down from well over 1000 to 128. However following debulking surgery even though I had two more rounds the ca 125 rose to 424. Underdeterred, because the ct scan was showing clear my oncologist pursued avastin alone until the ca125 continued to rise. I then had a PET scan which showed spread to the lymph nodes above and below the diaphragm. At that point he put me onto carbo/caelyx. The ca125 ultimately rose to 1056 but after just 2 treatments it has fallen to 378. I guess the ‘trick’ for all of us is to find a suitable maintenance regime. 🙏🤞 very best wishes

Katy 💕

Horsesrock profile image
Horsesrock in reply to NewtonEmma1900

thanks Katy, that sounds v positive ..long may the drop continue!! 🤞 charlotte

NewtonEmma1900 profile image
NewtonEmma1900 in reply to Horsesrock

Charlotte I do hope your oncologist will find away of sorting out out the pleura. I am just wondering if that might happen to me going forward because of my lymph nodes. 🙏for both of us.

Georgiatec profile image
Georgiatec

I had Carbo/Caelyx and found it didn’t make me too ill. I did have sore feet though. Can I ask why you were taken off Olaparib?

Purplerose12 profile image
Purplerose12 in reply to Georgiatec

I could only have it for 2 years after frontline x

RoseMS profile image
RoseMS

I’m sorry to hear you have a recurrence so soon after 2 years maintenance of Olaparib. We’re you NED after completing the 2 years Lindy? Does seem like a case for continuing after 2 years…if it’s working why change? Yes, I’ve heard the risk of other cancers if staying on it longer, but I truly would wish to stay on it as my choice/ my risk. Ive recently completed my 2 years of Olaparib and now watch and wait.

Also, if it worked once, which it did for you, why not again? Is this just based on the NHS I funding decisions I would like to know. Hope the new treatment is successful and very tolerable for you. Also, are they giving Avastin with the chemo, did you have it first time? X

Purplerose12 profile image
Purplerose12 in reply to RoseMS

I don’t know if I was NED after finishing Olaparib, I never had any scans or CA125 blood tests was just told if symptoms occur then they would scan.

I asked about maintenance after but was told no, and no I’ve never had Avastin.

Hope you keep well x

RoseMS profile image
RoseMS in reply to Purplerose12

NICE guidelines state that if not NED after 2 year on Olaparib, oncologist has authority to continue patient on medication. What’re are you based PurpleRose? Also, how was your CA125 during the 2 years you were on Olaparib maintenance? X

Purplerose12 profile image
Purplerose12 in reply to RoseMS

I’m getting treatment at James Cook hospital Middlesbrough. I never had regular CA125 checks last one I had was in May 21 when it was 7 x

Realistic profile image
Realistic

So sorry this has happened to you,hopefully this combo will do the trick. I haven't any experience with your combo. I had. Taxol/carbo tough at times l admit but worked so far for me 3 years since chemo. Good luck with your treament prayers that it works for you were all different but keep yourself well & positive. Sending love and big hugs . SheilaFxxx

Purplerose12 profile image
Purplerose12

Thank you and long may you keep well x

Kaitlinsmum profile image
Kaitlinsmum

me too, similar story but been watching and waiting since January. Getting latest scan results in 2 days. Then will find out the plan to go forward. Good luck xx

Purplerose12 profile image
Purplerose12

Good luck with your scan results x

delia2 profile image
delia2

Hi. I do hope the new chemo works for you. It seems odd that you didn’t have regular CA125 tests or any scans. For future reference there are trials out there combining PARPs with other drugs and there should be immunotherapy trials in the pipeline. Xx

Lobster2 profile image
Lobster2

Get a 2nd opinion on the PARP or do your own research. I was on Neraparib 2 years before having a 2nd recurrence. After that round of chemo they put me on Rubraca (different med but still a PARP). They couldn't put me back on the same PARP as before but could put me on a different one.

I vividly recall the phone call from my oncologist telling me my cancer was back after being clear 2 years from my original hysterectomy and de-bulking surgery. I fully believed I was healed and the cancer was gone for good. I lost it hearing the news it was back. Yesterday I started chemo yet again for my 3rd recurrence. I took the news of #2 and #3 much better because now it's almost like I expect it's coming back, even though and I pray (and many others praying for me) that I'll be healed and it will never return. So, I continue to trust my doctors and the medicine, but I continue to pray and believe for 100% healing. I pray your treatment doesn't make you too ill and it's effective! Take it one day at a time.

Purplerose12 profile image
Purplerose12 in reply to Lobster2

Sorry to hear you’re facing your 3rd recurrence, take care x

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