Hello all.....Let me start by saying how lovely all you ladies are, and how comforting it is to have you all here.
I was wondering if anyone out there has had mets to the liver? I have enjoyed a wonderful 27 month remission, and I thank God for it every day. I know that's more than I could have hoped for after having been diagnosed with stage 4 OC.
My ca125 started to bounce around between 21 and 90. My doctors had no explanation. The last one was 84, so I had a ct scan, and that showed mets to my liver. I realize the ca125 numbers seem so low in comparison to others I've seen, but my doctor said that my 539 (my number on diagnosis) was like someone else having a number in the thousands. I guess it's just the difference between all our bodies.
I am waiting now to hear if I am eligible for a trial......I am in the US. I would get the carboplatin alone, or in addition to that I would receive one or two pills. I've heard they are having good results with this. Even if I don't get into the trial, I will still have the carboplatin. It, along with the taxol, seems to have beaten the beast back for a good while!
Just wondering if anyone has had the monster take up residence in their liver, and what was done.
You are all in my thoughts and prayers every day. Thank you for your support....JudyV
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Hi Judy...don't have any answers for you I'm afraid but I am sure someone will..just wanted to say what a long remission you had..I'm also stage 4 so it's good to hear and spookily enough my ca125 was 67 on dx...never gone below 16 either..weird! xx
Hi Lyndy.....Thank you for your note. Yes, my doctor called it a "conundrum" regarding the differences and the fluctuation in the ca125 tests. I hope you're enjoying a long remission now. Hugs and prayers for you and your family.....JudyV
OH, Lily-Anne.....I'm so sorry yours has gone to your liver, too. Mine did show up on the CT scan. It's a little disconcerting.......When I was first diagnosed, I had ct, mri and pet scans and NOTHING showed. The surgeon removed a large tumor on my omentum, and several other tumors at that time. Now, a 1 inch (3.3cm) mass shows in my liver. Go figure! I'm meeting with the nurse tomorrow to discuss the trial that's going on here.... in the US. Not sure what I'll do. Thank you for responding. I'll keep you posted, and please let me know how you do on the carboplatin. Thinking of you and your family........JudyV
Hi there - I too have metastases in my liver and original ca125 in July 2015 was In the 500s carboplatin/paclitaxol brought that down to 12 and it has stayed low but after a further year on avastin which finished in jan 2017 the tumours in the liver are growing again. This was not clear on CT scan but MRI confirmed it so I have just had the first of six rounds of carboplatin/ caelyx. Onc says results with this combination are similar to taxol and carbo but we can keep taxol in the armoury for later. I hope to get another period of partial remission but am pretty tired right now with constipation as a side effect! But onward and upward and keeping the old chin up! Have as good a day as possible and love and hugs all round xxx
HI Katsmum....I'm so sorry you're having constipation. I did too, terribly, when I was having my chemo. The only thing that worked for me was Lactulose. You need a prescription for that, but it was worth getting. When I went to the pharmacy to pick it up, the pharmacist at first said she didn't have any on hand. Then she looked and found enough for a dose or two. I said....GIVE ME WHAT YOU HAVE....AND GIVE IT TO ME NOW! She got the idea, and that fixed me right up! I hope you do well on the chemo regime you're on now. I'll be praying for the beast to leave you alone!
Thanks Judy I am awaiting a call from GP so will ask for that and give it a try as getting really uncomfortable now! Never wanted a poo so badly in all my life lol! Xxx
Good morning Judy and yes same as me! Was diagnosed with OC 3b 3 yrs ago - had surgery and carbo / taxol but sadly recurred in my liver 8 months later. Was only 1 site near the outer edge at the back apparently!
Had chemo again which cleared it for 6 months but then recurred again at the front of the liver this time - alien likes to spread around I thought! Had yet more chemo which cleared it yet again.
Am now in 4th line treatment now of carbo / gem as have enlarged abdominal lymph nodes and tiny deposits of disease abdominally - bizarrely my liver is clear! !!!!
I guess what I'm saying Judy is liver mets sounds horrific I know but my liver function was never compromised and I felt pretty well throughout and still do! Strap on our big girl pants and try to keep 2 steps ahead of this little b......d! !!!!
Good luck with your next phase and keep us posted 🍀🍀💕💕.
Hi Maz........Wow, you've really had the beast knocking on your door! Thank God there are meds these days that can at least knock it back when it rears it's ugly head!
I have taken out my big girl pants and had them dry cleaned for the next round!
I will keep you all posted. I just came back from a visit with the nurse. I'll have to be deciding soon as to whether I want to do chemo again , or have my name submitted for a study they are doing here in the US......maybe in the UK, too. It's the NRG-0004. I'll be seeing my doctor in the next several days for more info on what's best for me. Fingers crossed...........Sending hugs and prayers your way......JudyV
Maz my path is very similar to yours. Except I chose not to have more chemo after my second line of carbo/gem when ct scan showed more metastases in January this year. I am wobbling now as I'm not feeling great but also don't want to put any more toxins in via chemo. Following vegan diet and trusting that I'm doing what is right for me. Big girl pants needed for me too!! Warmest wishes Debs 🙏
I, too, have the pest in my liver now on third recurrence! Having had severe allergic reaction to carboplatin I am on Cisplatin and Caelyx (slow release version pegolated something or other) I have had pain and have a morphine patch, waiting for scan results on Thursday to see if it's working.
OH, Claire......I'm so sorry you're having pain on top of all you've been through! I'm sending extra prayers your way for good results from your scan on Thursday.
Hello. I was originally diagnosed over 6 years ago as stage 3/4. It recurred including patchesnon my liver in 2013 and carbo/gemcitabine gave me 20 months remission. So as others have said, liver involvement sounds dreadful but can be treated. I hope they find something that succeeds for you x
Thank you, Lesley! That's very encouraging. Thank goodness we're living in these times. My Auntie had OC in the 1970's, and it's so different now. I'm sure they'll find the right course of treatment for me. I've enjoyed a 27 month remission, so that's a good sign that I should do well this time.
I wish you continued remission! Hugs to you.......JudyV
Hi Judy, sorry to hear your recent results which must be so disappointing.
I was originally diagnosed Sept 2014 3C high grade serous and have never acheived NED or remission'.
I had 8 x carbo/Taxol (interim surgery) followed by 18x Avastin, 2nd line 6 x Caelyx/carbo, 3rd line 11 x weekly Taxol which was stopped 2 weeks ago as not working.
Following big increase in CA125 to 2600, (up 600) urgent scan ordered. Results not good, the cancer has been having a mad party, multiple nodules in both lungs, multiple lesions in liver, with large node in porta hepatis, very large mass in pelvis with numerous new tumors in pelvis and peritoneal. Numerous new lymph nodes. All in all c***.
I am due to start 4th line, Topotecan on Monday, has anybody had any experience of this Chemo?
The options are fast running out, considering seeking a 2nd opinion.
Wishing you well and hope you are successful finding a trial and the next treatment works for you.
Oh, Felicity......God Bless you. You are so brave! Yes, I would definitely seek another opinion. Have you asked any of the ladies on this forum of other facilities/doctors in your area? I haven't heard of the Topotecan, but let's hope that's just the one that will do the trick for you. I will be sending prayers your way for the wretched beast to leave you alone! Stay strong. You're not alone.......Hugs....JudyV
The scan showed a small 1 cm lesion on my liver. Currently, there are no plans to do anything other than monitor it. The fact that it is not growing fast in my favor, or so I have been told. I am considered "stable". I hope they give you a good game plan and address it.
Hi Rppizio......I think it's reasonable to monitor your lesion since it's still so small. Here's wishing you many STABLE years! I'll post when I get my plan in place.
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Here we go again - again!!
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