Anyone diagnosed with metastatic carcinoma high grade serous stage 3c survivors?

[Luchie]

Hi my fellow teal ladies., I hope you are all well as can be dealing with this horrid disease. I don't post much but I do read all your post and comments. Sometimes I contribute if I know I can be of help experience wise. I was diagnosed September 2016 high grade serous stage 3c. Had the carbo/taxol and surgery after my 4th infusion. Finished my treatment March 2017 and on avastin as my maintenance which finished end of Feb. this year. It's now 2 months since my avastin finished but I still feel so achy in my joints and muscle and my bloatedness is back, although not persistent. My previous scans which was last June and January of this year were both clear. I had Onother scan last April 18th just to see how I responded to avastin and I'm awaiting results of that and my ca 125. My Ca 125 was 371 when I was 1st diagnosed and that went down to 4 after my last infusion of carbo/taxol. But slowly creeping up from 4 then 8, 12 and was 16 last time. It's the bloatedness I'm worried about and ascites as this was how I was diagnosed before having been drained of 5 litres of fluid. I just wonder if any of you ladies had experienced this? Sorry for the long post. I know there's ladies there who are more worst than others but it's so nice to exchange our experiences with one onother. Love to you all.

Luchie😘

Ps. Pictures was taken during our family holidays last February. Xx

[Lindaura]

Oh dear,

I would worry if you are experiencing what might be ascites.

It is criminal that you have not received your CA-125 results yet.

Today is Monday. Call and chase up those results. Ask for an appointment even for an ultrasound to check out that fluid.

Also, have you had the BRCA TEST? We all need to be tested for the BRCA1 or 2 mutation.

It is criminal that this test is not offered as soon as we show up with Ovarian Cancer, for having this mutation greatly increases your chance of recurrence and of getting breast cancer in the near future..

Knowing if you have the mutation would inform your treatment after your 1st regimen.

My two cents!

Take the bit between your teeth and force the issue. Too critical to wait.

Best if luck,

Laura

[Luchie in reply to Lindaura]

Hi Laura, yes I was tested with the BRCA test straight away, and I was negative. I also phoned them now to asked for my scan and CA125 result which was done last Thursday and they now fastracked my appointment this coming Thursday. They will not tell me my Ca 125 on the phone but they said my consultant oncologist will explain everything to me on Thursday including the result of my ct scan done 2 weeks ago. The waiting is killing me. I know they found something otherwise they will not put my appointment forward. Thank you for your reply. Take care. Xx

[Lindaura in reply to Luchie]

I am so pleased to hear that your wait will be only until Thursday. The week will fly by with your anticipation and you can do more research, just in case, on second line treatment alternatives, while you wait.

That is great that you are BRCA Negative. I had fantastic treatment for my first line cancer, same as yours, high grade serous carcinoma if fallopian or Ovarian origin, But was never offered the BRCA testing and, truth be told, I was pretty ignorant, so never asked for it until my last all clear end of treatment appointment, 5 of March 2018.

I still have not received my genetics appointment and I am feeling exasperated as my sister has had a new onset of Breast Cancer back in the states and she was tested for the first time and came up Positive for BRCA1.

I never even realised that breast cancer and Ovarian cancer were genetically related! I have 2 sisters and we all have daughters. So we need that test asap!

Good luck to you this week.

You sound as if you are prepared and I am sure you will win the next fight if there is one!

Laura

[Maxjor in reply to Lindaura]

Lindaura---also have any sons or males tested who are related to your BRCA positive sister. My father passed it down to me and I have two sons who will need to be tested soon (my sisters are negative). Prostate, Melanoma, Pancreatic and Breast are all male BRCA cancers. My Dad who passed away had prostate and pancreatic and back in 1997 when that happened, no one knew they were related so it was never suggested we be tested even though we persisted in trying to find a connection as to why he had two kinds of cancer. It took me being in a clinical trial for the testing to occur and quite the surprise to me!

[Lindaura in reply to Maxjor]

That is truly fascinating. And awful!

We are just beginning to investigate the trail. I have not been tested yet, grrr, but I have notified every one to speed things up.

It is all very educational and so much to learn and to inform all our sisters- meaning all women, and I guess men, too now, of all these connections and then alternates for prophylactic treatment, etc.

A long strange trip...

Thanks,

Laura

[Seasun36-uk in reply to Lindaura]

Hi Laura. It took ages for my blood test form to come through the post (from the BRI), with a consent form, following a long (good) phone call with a Geneticist at Bristol. Now my blood is being tested and the wait for an appointment will be 3-4 months. I had to ask my Oncologist. I agree - I think we should be offered it routinely, as it has an impact on future treatment options, as well of course on the testing of other family members. Wishing you well ☀️🌺

[Lindaura in reply to Seasun36-uk]

That is just not good enough. If that is how long I have to wait, I will have to do something!

[Seasun36-uk in reply to Lindaura]

Hi Laura. Once they receive the blood test, I think the process itself takes a long time (?why); 3-4 months. Maybe it’s the laboratory techniques/tests?? Lx

[Lindaura in reply to Seasun36-uk]

This just isn't acceptable. I thought my sister's took a long time, in the USA, but it was only 1 month to get the results and the test was taken immediately upon being offered.

My entire family is anxious. We need to know.

X

[Seasun36-uk in reply to Lindaura]

Hi Laura. Ask your Onc or CNS how far along the process you are. The blood test was simple in that, although it had a different form, it was done with my other (routine) bloods @ my GP surgery. Do you want to PM me? I am in Glos. Your bloods would go to Bristol too, as mine did. Linda xx

[Lindaura in reply to Seasun36-uk]

Thanks,

I just met with my GP to discuss hurrying it along and spoke to my CNS, who is wonderful, about the same issue, with the knowledge that I am Jewish and my sister just tested positive for BRCA1.

Thanks again,

Laura

[Seasun36-uk]

Hi Luchie, what a lovely photo!! 🙂

I hope you get very good & thorough care when you are seen. Linda xx 🌺

[Luchie in reply to Seasun36-uk]

Hi Linda, thank you for your reply, I was tested negative on the BRCA gene. I will have the result of my scan tomorrow and my ca 125. Deep inside me I think it's back because my stomach is so bloated. I pray to God I'm wrong as I just finished my avastin maintenance 2 months ago. I was so proud that I finished that with no major side effects, and now I feel so deflated. Take care. Xx

[Seasun36-uk in reply to Luchie]

Let us know how you get on. Thinking of you Luchie 🌸🌺

[March2017]

I was offered the test straight away and am BRCA2 it took 2 months to get results. There was no one in my family that I knew of that had had the particular cancers so it was a surprise. My daughter has been tested results 4-6 weeks. Although it's not what I wanted I took from it the positives , BRCA is platinum sensitive and there are a lot more drugs accessible to us should it reoccur. I met a few ladies at The Take Over campaign event at Westminster last year in my position doing very well! I had a good chat with the reseacher there and was given great info about BRCA, I also felt that at least I knew why I had OC which in a way made me feel better

[Luchie in reply to March2017]

Thank you for your information. Wishing you a very long remission. Xxx