PPC and No Ovaries since 2009

Hi all, I haven't posted in many months. Just trying to heal. Avoid the topic. Concentrating on healing... living life. To review, I was diagnosed with PPC last March with a Omental cake after having a CT for a kidney stone. Well as we know it snowballs from there. Surgery went well, all disease removed.(which was very little). 6 rounds of chemo. Braca 1&2 neg. lesions pathology deemed low grade. I feel like a million bucks now except for neuropathy in my feet. I am doing B supplements and acupuncture which seems to help. I have been off chemo for 1 month now and hair is now coming in. I have a few questions:

1) What was your CA 125 at start? Mine was 514, now 17.

2) If you had neuropathy from the chemo how long did it linger and how did you treat it?

3) Any reoccurrence? if so how long before it and what was your treatment?

4) How often do you do surveillance?

Here's hoping everyone a positive outcomne!

20 Replies

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  • Hi lovely,

    To answer most of your questions with 1 answer everybody is different some people have had a 'normal range' CA125 and still been diagnosed others end CA125 are above 'normal range' it really depends on you as a person.

    As for surveillance your Onc will decide what they think is best but you can keep in touch with your CNS or the Onc team should you feel something is wrong xxx

  • Same applies for reoccurrence and the neuropathy everybody is different xxx

  • Hi there

    While I agree with the other replies that everyone is different I just want to answer your questions in the order you gave them and I hope it helps. I was diagnosed with stage 3c high grade serous PPC in 2011. CA125 was over 8000 and I was given chemo only Carboplatin/Taxol as inoperable.

    1 8000 . Result last week 24

    2. Neuropathy in my fingers only lasted less than a year.

    3. Recurrence in my peri aortic lymph nodes last year. Treated with Carboplatin only

    4 . I am checked every 3months by my gynaecologist and oncologist alternatively .

    I hope you continue to improve . Keep in touch .

    XXX

  • Thank you Molly. I started my CA125 at 514 at last check 17. Neuropathy is being treated with B supplements and acupuncture and seems to work. I am not looking at this as a death sentence but a demon that I will overcome.

  • That's such a great attitude to have. I have always taken Vitamin B as I was deficient in B12 so maybe it actually helped in clearing up my neuropathy which is interesting to know. Meanwhile we will look to the future with hope.

    XXX

  • what stage were you diagnosed as Molly? I was 3b. And did you do Braca testing?

    Are you in the states or UK? I am in the states .. I am seeing that there are some differences in treatments.

    How long have you been diagnosed?

  • Your posting gives me great hope.

    I received less then favorable news from my dr (similar scenario.)..

    I wii keep fighting aggressively while the quality of life is good

  • Hi there

    If it's my reply that gives you hope I am glad of that. I do go up and down too so a positive message like yours lifts me up again. I do know that I am luckier than many women so I should be grateful . This vile disease will be beaten for good one day and we will have helped. Take care

    XXX

  • Blessings to each and everyone

  • I was diagnosed at stage 3c high grade serous in 2011. I wasn't offered gene testing when I told them I had no family history of either OC or Breast cancer. I live in Ireland . There are different treatments and approaches but researchers are learning all the time so let's hope we can go on indefinitely. We're your ovaries removed because of OC ?

  • Well I was diagnosed with Low grade PPC last March after having a kidney stone attack. They found something called a omental cake(fatty tumor) that is caused by ovarian cancer. I had a Total Hyst in 09 but no cancer just age and Fibroids. No family history either. So its such a head scratcher for me. I am now 57 and I believe we will whip this demon out. I feel like I am free of it for now. I will see my Onc/Gyn tomorrow and I'm nervous about it.. I guess because she is the one who gives this demon a face. I guess the upside is that I have low grade(slow growing) which I guess is even rarer yet.

    We hold fast that we will rid this demon or know how to conquer it!

    Have you had any reoccurrence? if so how long was it when you did? and How are you doing today?

  • Hi there

    Not sure if you read my first reply to your original post so here goes again . I had a recurrence last year in my peri aortic lymph nodes after being NED for nearly five years. At the moment I'm doing ok and I am checked every three months. Next appt is in Oct. Please keep in touch.

    XXX

  • I realized that after I sent it..sorry

  • I was diagnosed with Stage IV low grade ovarian cancer 6 yrs ago. At the end of surgery and chemo my CA125 was 180 it had come down from 2400. I was left with some stable low volume residual disease so not NED.

    During the first 12 months my CA125 gradually fell without any further intervention but then started to raise again. However it took another 6 months before anything significant showed on my scans and before I started to get any major symptoms. Then I had second line treatment.

    Since then I have been on hormone treatment, had a third line of chemo and been on a clinical trial.

    Have they tested your tissue samples for oestrogen receptors. Low grade cancers tend to be more hormone driven. I would enquire about going on hormone inhibitors as a maintenance therapy. There was some data that came out of MD Anderson in the States that suggest that this can prolong remission periods in low grade cancers.

  • Good information. I see my Onc/Gyn tomorrow and will inquire. I did get pathology done and was ER positive. I asked these questions of everyone as there seems to be little info that is current with this diagnoses. I am a cause & effect type person so just trying to get some real data for comparisons.

  • It was originally thought I had PPC but this was changed to low grade serous ovarian after surgery. The trouble is making this comparison is that we are different and respond individually to treatment.

    As you may have also gathered Ovarian Cancer is not one disease but there are many types.

  • I had total Hysterectomy in 09, no Cancer then just fibroids. Took everything out due to age. Here is where I think the PPC comes in for me. I had been on HRT(Vivelle Dot 0.1mg 2x/wk). And when you mentioned the Estrogen cell receptors that just makes sense to me now. The Lining of out peritoneal area is the same cell make up from our ovaries deeming it ovarian even if we have no ovaries. Fortunately when they did surgery there was very little disease and was all removed. Slowly making some sense of this.

  • Yes the cells have the same origin

  • Hi there, that sounds interesting I am not low graded but it good to hear there are things out there to help. Take care Cindyxx

  • Good to hear you are healing well and taking time to recover. And to take in your journey.

    I think when you are going through all the treatment you are too poorly to actually digest what has happened.

    It's not until after chemo that it all hits you. Mi struggled for quite a while and actually deleted this app as just couldn't cope. I've since taken huge comfort in reading everyone's posts and replies.

    It's great your hair is growing and you are feeling so well. We do have to make the most of each day of our lives. No one knows quite what tomorrow will bring.

    Each of us is different. All CA125 is individual. I think we all react differently to any medication. But it does help knowing everyone's different experience.

    1) My CA125 was 4200. Now 14.

    I was diagnosed 3b high grade.

    2) Neuropathy lasted about 8 months for me. Mainly hands and feet. I still have a tiny bit in ends of fingers. Finished chemo end of Dec 2016.

    Putting earrings in is tricky. And doing up necklaces. I used hot water bottles and walked a lot !

    3) I had op in May last year. Took a while to recover as wound completely opened up. Couldn't start chemo until August. No recurrence so far.

    4) Have had 2 check ups and all fine so far. No scans just blood test. Have seen oncologist each time.

    I try not to eat carbs or foods that make me bloat as it makes my tummy quite sore.

    But feel positive. Happy. And making most of life. Work full time and am so glad to be able to.

    But we are all different. All have different stories.

    I hope you continue to recover so well and remain happy and positive yourself. X

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