Hello, my lovely ladies! Thank you , once again, for keeping me sane in the last 3 weeks. As you know, that was my first treatment for first recurrence of OC. Originally diagnosed in 2015. In looking at my CATSCAN, I noticed that the darn cell came back "adjacent to my liver". Then the report disclosed that I had Hepatic Stetosis, commonly known as fatty liver. I get that. Just viewed blood results online and the liver number are all off. Not sure I'm qualified to read my own results. I went on Monday for the CA125 test and an exam with a PA. She was new. She teared up twice while speaking with me. That made me a little paranoid. Wasn't sure if she had allergies or just knew something I didn't. Of course, I know it's full disclosure so I'm sure they are not "hiding" anything from me.
I guess my real question is if any of you experienced liver numbers jumping into the not so great category? I must say that being able to view results online is great, but, only if I know what to do with that info. Ha. Took biology and failed miserably many years ago.
Hope all you ladies are doing well, laughing and staying warm. It dumped snow here in NY again. What a pain in the arse!
Marisa
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My first recurrence was diagnosed last summer, and at the same time my ALT liver test was about 4x higher than the ‘normal’ range. It put me well outside some clinical trials I was interested in, and according to my oncologist, it also meant I couldn’t have chemo. She advised I stop taking all supplements and unnecessary medications and ‘rest’ my liver. The ALT was monitored and over the course of a few weeks it came back down to the normal range. Can’t really say why that was, but it resolved itself.
Hi, Vicki. Thank you so much for your response. That was reassuring to know that the ALT can be controlled as mine is twice the amount over top of range. It also made me remember that my primary doctor had increase my cholesterol medication in the last 2 months. Wondering if that had an impact. Thank you, Vic!
Is it a statin for cholesterol, Marisa? I’d been taken a mix of ‘off label’ drugs with anti-cancer properties, including a statin, and my medical team thought it could have been the culprit because the one I was taking was known to have liver toxicity as a side effect. It might be worth checking with your doctor, but it will be a case of balancing the need for the drug vs the need for the liver to return to a more acceptable range. In my case, I didn’t need to be taking it, so it was sensible for me to stop, but if you actually need it, then that might not be a wise approach. Definitely check with a doctor before deciding anything.
You are lucky that you get to see your scan results on line. I finally had my lovely Onc print out and give me my last scan, which I studied in depth.
Though not doctors , we can look up each finding and see what they mean, so at least we can ask the right questions, as well as figure out if our docs are leaving out pertinent info.
For instance, I found out that the report showed a partial collapse in both lungs! It was written in sci lingo, which I looked up, and although self-repairing, it was never mentioned to me, even though at the time of my first hospitalisation, the pleural effusion was definitely crushing my lungs. I guess the blood clots in both lungs were scary enough, so they didn't want to mention it.
My successful Chemo dealt with the pleural effusion and although still breathless sometimes, I am so much better.
Anyway, just check out each questionable finding in your scan.
My dear, Laura. So happy you had a successful chemo and doing so much better. I cannot imagine how scary your lung ordeal was! You sound very strong and determined!
Sometimes I am dangerous with knowledge.
Once I start studying the fatty liver and other smaller issues I. My catscan and blood results I begin to panic and wonder why they only mentioned the cancer cell they found. So, today I will ask them to give a look at the rest but I will still have my primary doctor look at the liver part. I've never been one to ever question a dr (I am old school Italian) but OC
And a few doses of chemo have made me grow some courage to ask questions. Sometimes I'm afraid of the answer. I'm a big girl now and can handle it.
Hi, Laura. Thought I would let you know that the PA here reassured me that they were not concerned with my liver numbers. Said they look at the total of numbers. They were more concerned with my blood levels. Receiving chemo today anyhow. Results of my CA125 number showed an increase from 21 to 26 which concerned me but they said this sometimes happens after first Chemo session.
I am in a similar situation to you with abnormal liver function test results since July 2017. The first thing my GP did was to stop my statin but the only effect that has had is to raise my cholesterol. I was referred to a gastroenterologist who I saw in December 2017 and then again in January this year.
He sent me for various scans all of which have come back normal, but the liver tests continue to be abnormally high by over 200 %, so I am still waiting for an explanation. I have not been allowed to restart my statin so am trying to control my cholesterol with diet, which I know from previous experience is not easy.
The gastroenterologist doesn’t seem to be unduly concerned about these abnormal readings, but like you, I don’t feel comfortable with such high levels.
I would ask to have further investigations, but bear in mind that they might not come up with an explanation, which I fully appreciate is frustrating.
Do message me if you want to discuss this further and I will be happy to answer your questions.
Hi, Barbara and thank you for that. Glad you mentioned going off the statin. My primary dr did not want my statin increased and told me to control with diet. As you said, not so easy.
My cardiologist went ahead and increased my statin. So here we are. A stand off between cholesterol and OC. OC trumps all!
Hi, Barbara. I'm here in the infusion chair and I asked about the liver numbers. The PA told me that they look at the total number and it was fine. They were more concerned about my blood levels as they always seem off because I have thalassemia minor which is also called Mediterranean blood anemia. Just a characteristic of my blood which sends out numbers reflecting I am anemic.
I will, however, follow up with my cardiologist regarding the statin anyway.
Wasn't too happy to hear my CA125 actually went up by 5 points from 21-26 since my first chemo 3 weeks ago. Again, they said that happens sometimes.
I have been Ned for 3 years, but 6 months ago my liver results were all over the place. I just took it into my head to drink lots of water and it was in the normal level 3 months ago, can’t explain, but there it is
Thank you for sharing that. Glad your liver numbers are back to normal. Nice remedy. Water I guess flushes our system. Sorry for asking but what is NED? Newbie question.
I would wish that for all of us ladies, always forever,
Best wishes Marisa xx
I’m dealing with first reoccurrence I understand what you mean about paranoia I watch my oncologist like a hawk and analysis her every twitch or gesture or word and read into everything she says eg maybe means will, we will try means no chance I run everything she says over and over in my head but they have to be honest with us, I wish you good results x
Ps we had snow recently didn’t quite deserve the term dump more like sprinkle see I analyse all words now LOLx
You are a riot, Scotty! I find myself overanylising everything this time around. He first time around I was in shock and just floated through the motions. This time the mind is playing tricks on my. It wasn't until I found this wonderful site with all you lovely ladies. You all gave me reassurence that having a recurrence was simply one step toward staying ahead of OC and beating it early enough. Thank god for the early warning system of Ca125.
You are the cites with "sprinkles vs dump"
We New Yorkers go for the best bang of one word to give a hard visual. And it was a dump! Lol.
Hi yes I’m on caelyx for 6 mths, I feel better now treatment started because I feel I’m doing something. Told my mum today but lied and said it was only precautionary treatment because I couldn’t bear her worrying as she is 82 & on her own now Dads gone. It won’t hurt her not to know the truth but it is hard my husband says I worry to much about what others think but I do feel I’ve let them all down by getting it back. Anyway I’ve never been to NY my husband Mark has & loved it so perhaps I should plan to but not when it’s snowing xxx
I know exactly what you are saying about letting people down. I just had that meltdown today. Friends invited us to dinner and we passed because my treatment was two days ago and I have no energy. Had I any energy I would go see my nephew play Lacrosse or my niece play softball or even go play with my one year old granddaughter. Of all things we have a puppy and I feel like I'm letting her down by not playing fetch. Sounds like I am having a pity party. I will snap out of it but I do feel down.
First time around three years ago my dad was 83 so I played it down. Didn't want him to worry. Everyone is so use to me being the strong one.
Yes, if you do come to NY come in the Spring or fall. Ny can be beautiful if you're not sweating g or freezing your butt off. Lol.
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Treatment number 6 today
Relieved the Liver Biopsy is over
Ca125 numbers not coming down as fast
Raised liver function.
Low Grade Serous Cancer, Mets to Liver, Liver Biopsy, Update #1: Carcinoma
