Caelyx.... successful outcomes????

[Seedlings]

I have just finished six rounds of monthly Caelyx only. This is my fourth line of chemo ie. Third recurrence.While my CA125 didn't go down to normal level it was decreasing steadily until I got my results yesterday for the fifth round . It had risen to 257 from 189. I was really upset with this. I feel the cancer is active again and I don't want to have to wait three weeks to be told this when I have the next CT.

I suppose my question to you ladies is, has any of you experience of this happening and then it dropping in time. After third round my CT showed a very good response in pelvis and abdomen but the liver tumour was unchanged and described as stable.

I really feel down and at the end of the rope here today.

Any words of wisdom would be most welcome.

Hugs of hope to all.🤗

[delia2]

Hi. I’m sorry you’re going through this emotional turmoil while not really knowing what’s happening. My CA 125 is not a marker so I can’t help with that. I had that combo for 1st recurrence and the cancer shrank by 2/3. Four weeks later I went on Olaparib and it eventually disappeared. As you know something else may have driven up your numbers. It’s possible that most of my he cancer is gone but the liver lesion is not and maybe that could be removed surgically or with radiation. I know waiting is so hard. Sending you hugs.

[Seedlings in reply to delia2]

Thanks Delia, I am really hoping that it's still only in my liver. Th waiting is torture as we all know it never gets earlier. I suppose as long as they can treat whatever is going on is the best I can hope for.

[Moonbeams33 in reply to delia2]

Would you mind sharing if you are BRAC positive or negative and HRD status. I am currently on Doxil (Caleyx) and Avastin after having a reoccurrence 2 months after finishing frontline Carboplatin and Taxol. I am wondering if I am a candidate for Olaparib if needed? How long did it take for Olaparib before you had results?

[Seedlings in reply to Moonbeams33]

Hi Moonbeam33I am negative for BRAC and HRD.

I was on Niraparib for fifteen months and once I got the right dose for me 100mg I had a good spell. Olaparib is only given to Braca positive patients as far as I know. Have you had your tumour tested for genetic profiling?.

Ann

[delia2 in reply to Moonbeams33]

Hi Moonbeams. My tumor is brca1 but I’m not. It took about 3 months. The fact that you’re considered platinum resistant might make you ineligible for Olaparib; I’m not sure. Possibly they would give you Niraparib? Also there’s a new drug in the US called Elahere. It may not be approved in Ireland but there may be a trial. It’s called mirvetuxemab soravtansine. I think they’re doing a trial in the UK.

[Moonbeams33 in reply to delia2]

Hi Delia. Thanks for your reply! I am in the US and eligible for Elahere as my folate receptor is at 80%.

I am uncertain due to the eye side effects of Elahere as I already have eye issues and also not convinced regarding efficacy.

So I guess we’ll see once I get my results from the PET scan I will have tomorrow.

[Jacquiemoo in reply to Moonbeams33]

Hi, I saw your post, I two was on the kind of chemo you were first put on, I was brac negative and hrd negative so was put on zejula. I had to wait for a grant as it was very expensive and it took about 6 weeks to be approved. So if your Dr is thinking of putting you on it, hopefully your insurance will pay for it, if not I would ask your Dr to start the paper work now if possible. And I will pray for this to help you.

[Seedlings in reply to Jacquiemoo]

Hi JacquiemooI was on Niraparib for fifteen months. I don't know if it's still an option for me. I have to wait to see what my CT shows. Thanks for your reply.

Ann

[Moonbeams33 in reply to Jacquiemoo]

Thank you so much. I will see if it is a consideration. My recent PET scan showed improvement in peritoneal area but breast and lymph look ominous. I haven’t talked to oncologist yet so waiting as you know can be nerve wracking. Do you tolerate the Zejula okay?

[Jacquiemoo in reply to Moonbeams33]

Hi, sorry this took a few days but I'm not on it currently as my lymph nodes show slight enlargement and showed to be metastatic so I'm back on carboplatin and doxil. My ca marker rose from 189 to 235 within 3 weeks. Dr told me to put the zejula on the back shelf for now. Will be praying for you..stay strong and positive, it gets you through it!

[candyapplegrey]

So sorry for the way you are feeling. Wish I could help. I am on 2nd recurrence + have a lesion on the liver. They want me to have another huge surgery then follow it with caelyx (and carbo) and I am not keen at all. This is not the first time I've read this recently - that this line shows initial success but then falters. Just sending you hugs and support. xx

[Seedlings in reply to candyapplegrey]

Hi Candy apple.Thanks for your reply. I had ablation done on my liver but it didn't work for me. I started chemo in November 23 , Caelyx only. I'm not carbolplatinum resistant but my oncologist wants to hold on using it until I really need it....not sure when that's going to be????. Am very worried. I'm hoping to speak with my nurse tomorrow.

Thanks for your good wishes.

Ann.

[Bellabella7]

don’t lose hope!!! Ever! There are other options and just because you don’t respond to one treatment doesn’t mean you won’t to another! I’m approaching my 5th set of treatments, had two debulking operations and my levels are increasing. Sadly ovarian cancer is something we have to learn to live with, in my case I’ve had it for at least 12 years! Treatments stave it off but haven’t totally removed it all. I’m hoping to start a trial called RAMP 301. It’s been approved and in general release in the USA.. trialling in the UK shortly. Don’t give up, keep fighting for yourself and look up trials and treatments so you can chase up your consultants .. huge hugs and love to you xxx

[Seedlings in reply to Bellabella7]

Thanks Bella for the words of encouragement. I need them. I'm feeling a bit better today but reassurance from women in the same position does help. I still haven't been able to get my nurse on the phone but I don't feel as panicked now.I want to wish you all the best of luck with your treatment. You're a great example to all. My consultant is looking into trial that I might be suitable for.

Hugs right back to you too.

Ann

[Pumpkininja]

Hello Seedlings hope you feel better.Have very similar situation.

The ca 125 went down very slowly.Last time went up but according to them doesn't count as I got a bacteria on my porth-cath / infection.

The MRI 1 month ago was ,all stable with small decrease.

Next week going for my 6 th round caelyx/carboplatin... scared because the side effects are each time worst.

Still recovering from the huge retention of water and of the bacteria( yesterday my last day of antibiotics).

Going to have in total more 2 sessions caelyx/ carboplatin and then on 30/06 final MRI.

Want to keep my mindset positive and visualize good results.

I understand completely your frustration and being scared.The same here.

We are doing our very best and fighting and hope somehow good results come on our future.

Keep hope*

All the Best xxx

[Seedlings in reply to Pumpkininja]

Well Pumkinninja you have been through the wars. I feel for you and I really hope that you get through the next couple of rounds without any complications. A break would be most welcome for us both!!!. Thanks for replying to me sending you hugs of hope .

Ann

[Pumpkininja in reply to Seedlings]

Dear Seedlings you have been through war too!!!you all are so brave.An inspiration to not give up.I was not so brave... asked to my doctor if they can give me less caelyx next time.

Guess the reply will be no.

So keep a positive mindsite and fight.

I really try to see it like something positive to help me against the cancer.

All the best and nice weekend

Xxx

[Pumpkininja in reply to Pumpkininja]

Hello Seedlings how are you doing?Just got my 6 th round of caelyx/carbo yesterday.The ca 125 went up and they are trying to book me a MRI of emergency, is super frustrating.They say the cancer might be active again...

All the best xxx

[Kaitlinsmum]

I'm sorry I don't have any advice but want to send you a virtual hug. Hang in there. Do what you can to stay calm. Can you get out in nature at all? Good luck xx

[Seedlings in reply to Kaitlinsmum]

Tks for the encouraging words. Feeling less panicked today and going to go for a walk soon. The sun is shining which is very rare in this part of Ireland 🤣. Ann

[SopSinger]

I have heard that Caelyx often sends CA125 up for a while before it starts to drop. Did you have any drop during treatment or has it been steadily rising? Sending hugs!

[Seedlings in reply to SopSinger]

Hi Sopsinger,Sorry for not getting back to you sooner. I just saw your reply!.

My numbers were dropping all through the treatment. It's after round five that my bloods went up. I've just had round six last Wednesday. That's when I found out the markers were gone up. They weren't back in the normal range, which I have always been after my previous treatments.

I'm worried, anxious and upset!. Hopefully I'll get to speak to oncology team on Monday. I'm trying to keep busy. Tks for your response

Ann 🤗🤗🤗

[SopSinger in reply to Seedlings]

Good news that your numbers were dropping, hopefully the recent rise is just a blip, either because of the Caelyx effect, or because of something else going on in your body. Have you had an infection or inflammation of any sort recently?

[Seedlings in reply to SopSinger]

Not that I know of. Although I was on steroids and antibiotics for a cough but GP said I didn't have an infection!. Still took them though.

[Lizchips]

Ask your Dr if they will do interperiteneal chemotherapy. See if you are a candidate. They do IV in conjunction with the IP chemo, into your abdomen. It adds yrs onto your chemo no reoccurrence for 3+ years. I've been cancer free 10 yrs. It works ask about it.best wishes Liz

[Irisisme]

Hi Seedlings,

I had a huge rise in my CA125 (4,900) after Caelyx/Cisplatin (similar to Carboplatin) and prognosis was poor. I’m now on Paclitaxel as a last resort, and CA125 came down massively (to 11) and last CT scan shows some reduction, including liver metastases. I nearly didn’t bother with the Paclitaxel because it was unlikely to work and I already have some neuropathy, now I’m glad I did. It hasn’t gone but I never have had an NED result (since 2016).

Perhaps my experience will give you hope.

Sending hugs,

Iris 🤗🤗

[Seedlings]

well thank you Iris, I appreciate your reply and information. I really hope you continue to do so well.

I’ll let you know how I get on. Hopefully I will get to talk with nurse tomorrow.

Ann🤗🤗