1st recurrence ovarian/ carbo/caelyx - My Ovacome

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1st recurrence ovarian/ carbo/caelyx

Duvin1 profile image
18 Replies

Don’t know if someone can answer my question. I had stage 4 ovarian cancer in September 18 had full hysterectomy and debulking surgery, 6 rounds of carbo/taxol and a year of avastin.

Had Ned until august this year and have a recurrence in my peritoneum and liver. Ca125 109. Now having carbo/caelyx and had a midway scan and ca125 has dropped to 45 the tumours have shrunk considerably but I have a lymph node in my peritoneum that has got bigger. The oncologist said that I will have another3 rounds of chemo, but said the lymph node will more than likely not change!! I’m now panicking as what happens if this doesn’t budge! Everything is going well apart from the lymph node!

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Duvin1
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18 Replies
SASSY196 profile image
SASSY196

Did oncologist indicate if you would be able to get parp based on your scan so far? My understanding is if there is enough shrinkage you will. I am hoping that is the case for you. Xxxxxxxxxxxx

Duvin1 profile image
Duvin1 in reply to SASSY196

Hiya. Thanks for your reply. In the beginning he said about a parp if everything was going in the right direction and that I would only need four rounds of chemo, then have a parp. I had a phone consultation with his registrar who went through my results and she said I would now need to continue for six rounds and then see what happens! She didn’t mention the parp. To be honest I was totally thrown when she said about the lymph node I didn’t think to ask

SUE7777 profile image
SUE7777 in reply to Duvin1

You can always get back to your team and ask about the parp and what the enlarged lymph node means. Don't be shy!

Duvin1 profile image
Duvin1 in reply to SUE7777

Yes I think I will. To be honest I’m one of those people that I want to know but I don’t because I might not like the answers! 😢 x

SUE7777 profile image
SUE7777 in reply to Duvin1

I know what you mean but your asking the forum so best to ask the experts. 🤞

Lind58 profile image
Lind58

Praying for the best for you 🙏🏽

Duvin1 profile image
Duvin1 in reply to Lind58

Thank you x

Inguc_is profile image
Inguc_is

My mom have same situacion, her stage 2017 2B , 2021 may recurrence and mts was all over abdomen and around liver, after chemo platinum based 2/3 go away, but some noodes stay in same size, also after 7 chemo, our oncologist said that they are same size a probably they will not be bigger maybe they will get smaller, as there is died mts inside, just said wait and look… other mts go away and at the start her ca 125 was 220 after 1st chemo 230, but agter 2nd 110, and after 7th 22.5

Duvin1 profile image
Duvin1

Yes sounds similar. Hope she’s ok. it’s waiting that’s a nightmare isn’t it x

Inguc_is profile image
Inguc_is in reply to Duvin1

Yes :( she finished chemo on 17.10.2021, after get ca 125 on 4.11 it was 22.5 but in 17.12 it rise to 34.5, it made me so sad :( she didnt make test again, to check what happened again she has CT scan on 29.01, i am in stress all the time :( dont know if it shows again any mts what we will do :( she feels good and go to work and so on…

Lyndy profile image
Lyndy

I think it might pay to get a second opinion. Could this node be operable or zappable with radiotherapy? What is the risk of leaving it?

I do think that most hospitals give good standard treatments but we know that OC isn’t a standard disease… so follow your hunch and find someone who is interested in answering your questions xx

Duvin1 profile image
Duvin1

I should really ask more questions!! The oncologist said we’ll see what happens after the 6 rounds and follow up scan. Will ask then what is going to happen. You never know this damn lymph node might disappear 🤞🏻

delia2 profile image
delia2

Hi. Don’t panic. I had a lymph node like that at the end of frontline and was really upset but a PET scan showed it wasn’t cancer. It’s slowly been shrinking for two years. Also at the ned of chemo for first recurrence I had a small amount of residual cancer but that wasn’t a problem for going on Olaparib and then Olaparib got rid of the remaining cancer. I think your situation should go in a positive direction. Xx

Duvin1 profile image
Duvin1 in reply to delia2

Thanks for replying. So glad you had a great outcome. I’m just going to focus now on being positive until my treatment is finished! 🤞🏻I will have the same outcome xx

Carpediem68 profile image
Carpediem68

Hi Duvin

I had debulking surgery for OC in November during which dozens of swollen lymph nodes were removed from my abdomen and pelvis. None of them were cancerous to my surgeon's suprise. It may be that the lymph node is swollen for another reason and is not cancerous? Wishing you luck!

Summergold2 profile image
Summergold2

Keep asking questions about parp are you braca or non? I had surgery Dec 2019 and reoccurrence April 2021. Doxil and Carbo 3 rounds and scan showed everything normal finished off the 3 rounds and started on Olaparib in Jan 2022 hoping to get a few more years of NED........The more info you have about what is going on inside the better you are to advocate for yourself! Ovacome is a great site for info as all of us are going through so much. Families too. Keep positive (I know how hard that is) and try to get a laugh in or more each day. There is nothing wrong with second opinions or researching on your own. Also remember every body is different and reacts differently to the drugs!Teal Ladies Stay Strong!

Duvin1 profile image
Duvin1 in reply to Summergold2

Thanks so much. Yes I’m going to ask, I’m non braca. Going to write everything down so I don’t forget like I normally do. The oncologist was very positive about everything going in the right direction apart from this one lymph node. I’m normally always laughing which is good. Have had a good cry to get it out my system. Fingers crossed for you staying Ned xx

Summergold2 profile image
Summergold2 in reply to Duvin1

You are stronger than you know and we all have a good cry now and again!

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