What does this mean?

edited November 2019 in Recurrence

Hi, I was originally diagnosed with stage 3C ovarian/omentum and peritoneal cancer in May 2017. I had 3 treatments of chemo (carboplatin and paclitaxel) then I had a hysterectomy and my omentum removed in August and then another 3 treatments whiich finally finished in October. I was so excited and said goodbye to all the chemo nurses and hoped that I'd never see them again. I then saw  my oncologist for what I thought would be the last time for 6 months (alternating with my surgeon) so I asked what happens from here. She told me that 80% of people with my type of cancer responded to the first round and of them 80% would recur within 6 months! This took the wind out of me, I was thinking more like 5 years.


Chemo took it's toll on me, I had 2 blood transfusions, 2 infusions of magnesium and a platelets transfusion. Not to mention putting on 12kg from the steroids.


Due to my other conditions my oncologist kept a close eye on me with blood tests every month and a follow up with her monthly. Since finishing chemo I have done a number of exercise programs including the Cancer Council's Enrich program and I am currently doing Active Survivor twice a week. So I was just starting to feel back to my normal self and everyone was commenting how well I looked, plus my hair had finally grown back enough to have it cut into a style.


As I said before my oncologist has me see her monthly, so my CA125 was 12 then 13 4 months in a row, then 21 then 35, she told me that that in itself wasn't a problem but we would continue to monitor it. Then just over 3 weeks ago I experienced pain in what I would call my 'Muffin top' area, it wasn't bad pain but continued for a couple of days and then intensified on about the 4th day. I instinctively knew something was wrong so I rang the cancer centre and pulled my appointment with the oncologist forward a few days. I had a blood test and then went to see her hoping that she would tell me I was suffering from a case of Stupidity and Paranoia. My CA125 was 48 and when I told her my symptoms she said that it looked like my cancer might be back! It was a year to the day since I saw her for the first time and 6 1/2 months since finishing chemo.


I had a PET scan and I have 3 spots 10mm in size near my liver and gallbladder. She said we will do another 6 rounds of just the Carboplatin every 3 weeks depending on my bone marrow and then I would be taking a drug called Olaparib (I'm BRACCA 2 positive) but I don't know what happens from there.

Ricky

Comments

  • Hi Karen,


    I can understand how you must be feeling very concerned about your cancer coming back again.  My situation is very similar to yours and I know how vulnerable and devastated I was when it came back again.  I was put back on the Carboplatin treatment for 6 months as well.   I am also BRCA2 positive and was able to go on a trial for the drug Olaparib.  I found the Olaparib drug a really good option, with minimal side effects.  (A little bit of nausea when first starting to take it - this settled down after a few days).  It is good because it is in tablet form, it works on the gene fault to alter its behaviour and to stop the cancer starting up again.  I was on a trial and I know a number of patients from that trial that are still using Olaparib with success after 5 years.  Take care.  Helen

  • Hi Helen


    I read your post in clinical trails in regard to Olaparib, are you still taking it?


    It's funny I feel better than I have felt in a long time but I have cancer again! All that I have read about recurring Ovarian cancer is pretty scary. Everybody tells me that I will be fine but I know that I won't be living to a ripe old age but no one wants to hear it. I'm an organiser and I need to have everything in place while it's not an imminent thing but no one wants to listen. I know I'm not shuffling off this earth anytime soon but it's important to me that my family get their mind around it instead of ignoring it and burying their head in the sand.


    My first chemo has gone well and I really had no side effects. Having a blood test tomorrow before my appointment with the oncologist on Thursday, hopefully my platelets are behaving themselves and my treatments go to schedule and I don have the problems I had last time.


    Karen


     

  • Hi Karen,


    No I am no longer on Olaparib.  Unfortunately it stopped being effective for me and my marker went back up again.  I therefore didn't meet the criteria for the trial and I had to leave the trial. The trial nurses and doctor were very nice and they still send me emails to ask how I am going.  I have since asked my oncologist if I could still take Olaparib (because by now it has come out on the PBF) she said that as it wasn't working for me anymore there would be no point in taking it.  I was very disappointed that it stopped being effective for me, however as I said in my previous post I know of a number of women who are still taking the drug with success 5 years on.


    Perhaps your family are burying their head in the sand, as their way of coping with your diagnosis.   It must be very stressful for them seeing you go through all the treatments etc.  I try to not think of the future too much and try to plan lots of little holidays that I can fit around my chemo treatments.  I am glad your first chemo went well and hopefully you will not have the problems that you had last time.  take care  Helen

  • Hi,


    My name is Barb. I was diagnosed with Ovarian Cancer on 11 November, 1998 (strangely enough, Remembrance Day) and had surgery - a full hysterectomy. My cancer type was a Granulosa Cell Tumour, a very rare type of ovarian cancer. As it had not spread beyond the cavity of the womb, my doctors did not think that any other treatment (other than 6 monthly blood tests, scans, and an x-ray) was necessary. The blood tests I have are Inhibin, CA125 and later, AMH. I had a recurrence of the cancer in 2007, as the tumour had relocated itself in the bowel. Further surgery was involved (the surgeon removed the last 38 cm of my bowel), followed this time, by 21 rounds of chemotherapy (BEP - Bleomycin, Etopicide and Cysplatin) over a nine-week period. This type of chemo is only given to women with a granulosa cell tumour and men with testicular cancer. My gynaecologist/oncologist told me that a recurrence was possible and I continued to have 6-monthly blood tests and my appointments alternated between the gynae/oncologist and the oncologist. The cancer did recur in 2015 and now I have 4 monthly blood tests, as well as scans.

  • Hi


    I ended up only having 5 of my planned 6 treatments of Carboplatin due to my platelets and the symptoms off my autoimmune disease flaring. I was started on Olaparib (I'm Bracca 2 positive) which I took for 7 weeks unfortunately I experienced abdominal pain the whole time (my recurring cancer is in the Peritoneal near the liver) I was sent for a CT scan and it was discovered that the Olaporib was working and one of my masses had grown from 10mm to 40mm. So now I start on chemo (Paclitaxil) next Thursday and will have it weekly through to the end of May (actually 3 on 1 off) then onto Caelyx.


    I asked the doctor what the prognosis was and she told me realistically less than 12 months. It was a bit confronting, I think it hasn't sunk in yet.

  • Hi Karen,


    What an awful thing to be told so close to Christmas!  My initial thought after reading your post was that until they have tried the Paclitaxil, how can they be so certain of the prognosis?  Perhaps your cancer will respond well to the planned treatment.  Is it possible for you to get a second opinion??


    Also, please keep in mind that there are always new treatments becoming available.  I personally know women who have had multiple reoccurrences and yet they are still around 10+ years later! Everyone is different!


    I know it is easier said than done, but try not to give up hope!


    Take care


    Karen

  • Hi Karen,


    Yes it was a horrible thing to hear. I know Cancer is an unpredictable thing and I will certainly fight it with all I have. I had accepted the fact that I would have 3 to 5 years if the Olaporib had worked but unfortunately that wasn't to be. I have a friend that has recommended Hemp Oil which I might give a try.


    i really trust my oncologist, she is very good and I can talk to her easily. I trust her to understand what's happening with me. She has communicated with my Rheumatologist during the whole process so as to still address my autoimmune issues. This is my third bout with cancer since May 2017 and my first diagnosis was stage 3C.


    I remain hopeful and will continue to try all that I can.


    Thanks for your thoughts and kindness.


    Karen

  • Hi I am new here, I was diagnosed with peritoneal cancer in December 2014, it was advanced stage 4, they gave me a 20 chance of making it to 5 years, I'm now at 4 years, had 5 occurrences currently back in chemo now. had debulking surgery in early 2015, and just been back in hospital this past December for ascites and not being able to get fluids and food down, its getting easier to eat now the ascites are going down from chemo, my last scan showed a thickening of the peritoneal layer which I can feel quite easily.


    When I was first put into chemo it was in my lymph nodes , my lungs and around my bowel partly blocking it, its since come back in so many places its been in my stomach, around my liver and pretty much everywhere at different stages. But I'm still here and going for another CT scan in a few weeks to see if chemo is working this time, I'm truly sick of it all but what can you do, you just keep taking one day at a time.

Sign In or Register to comment.