I was diagnosed with OC in july 2018. My ca125 was 6800. After 3 rounds of carbo/paxl I had debulking surgery & a total colon removal in Nov 2018. I received 3 further rounds of just carbo after ,,due to severe nerve damage to fingers with paxl. If I was to continue it would have affected my ability to change & empty my stoma bag..In Jan 2019 I received my last round of carbo & my ca125 was at 98. Come June 2019 my ca125 had increased to 700.A further scan revealed changes in what they thought were harmless cyst on my liver. I received Gem over the following 5 months. Then had another scan.No noticable changes to my cysts? but my ca125 had risen yet again to 800..Opted for a chemo free xmas to allow my body to recover a little more. Come Jan 2020 my cat is now 1100. A further scan revealed another cysts? Something they say may have always been there but never showed..Last week my ca125 had risen yet again, this time to 1500. I am now on oral medication Etoposide I take at home. Have to take it for 10 & get 11 days off. Today is day 7 & I fell ok. No major side affects yet & my bloods are looking good to continue.Thanks for hearing me out.
My journey to date.: I was diagnosed with OC in... - My Ovacome
My journey to date.
Dear Matilda,
What a journey! All very difficult for you, but it appears you are being well looked after by your medical team.
It is just is so problematical to sort out exactly what this disease is up to.
I hope that you are also getting good support from family and friends.
It’s hard to cope with this alone.
But this site has been extremely helpful to many of us and I hope you will find answers and support here, too.
Gentle welcoming hugs,
Laura
Hi Matilda, welcome to the forum where none of us want to be but where you will find information, encouragement and inspiration from friends on here.
We started our ‘journey’ at a very similar time but due to a delay I didn’t finish my first round until March 19. However my surgery was nothing like yours and I was fortunate to have 9 fabulous months in remission.
But like yours my CA125 is rising and a scan shows I have 3 small areas of active disease. At the moment I am taking tamoxifen and hoping it will inhibit the growth but know that very likely there will be more chemo at some point.
Fortunately I feel well and am making the best of each day. I do hope the Etoposide works and that you can enjoy some respite from this flipping disease.
Take care
Jan. x
Hi, I too had 7months of freedom after a similar story to yours but am now back on carbo platin/Caelyx. Am intrigued as to why you have been put on tamoxifen ? I too am taking other drugs, Metformin, Atorvastatin plus 2 other drugs alongside the chemo for palliative care. How long I can tolerate all these drugs plus chemo at my tender years remains to be seen. However I am heartened and at the same time upset to read of the various experiences of fellow OC patients. X
Hiya my understanding is that because my new growths are quite small a delay to starting Chemo does not impact on outcome. Meanwhile Tamoxifen can inhibit their growth, also having a longer gap between different lots of platinum based chemo can help prevent building up a resistance.
I am interested to read that you had second surgery as my oncologist said a straight ‘no’ .
As you say , the experiences of others are always interesting and an opportunity to learn more about what is happening in other areas or even countries.
I believe we have to be our own best advocates when we are vulnerable so knowledge is key.
Hoping today is a good one for you.
Jan. x
Thankyou for your prompt reply which was very informative. My oncologist also said, inoperable but I went back to my original surgeon who said it was doable. However my surgeon couldn’t remove the underarm lymph nodes but as it had metastasised elsewhere she was able to take away the visible cysts!!!! Back on monthly carboplatin/Caelyx , my CA125 has reduced a little but am just getting on with life. Don’t look forward or back just live for today. X
love from Angela xxx
Hi Matilda. My goodness, you haven't exactly had a good run, have you?!! You didn't say what stage you were when diagnosed and are you High grade serous or something different (if you know that).
A couple of things come to mind: If you're having scans done & things are being missed, then I think it must be CT scans you're having, so you could step it up and ask for a PET scan next time, which would be more accurate. The other thing is, you need to get that CA125 down, so let's hope the Etoposide will do that but if not, then you might consider more chemo. A lot of women on here, including myself, have found Carbo/Caelyx to be very effective. Best wishes. Pauline.
Unsure what is avaible in nz under our health system. The 1st combination was the 1 I was advised to take the 1st time to shrink the tumour prior to surgery. It did do as it was meant to & surgery went ahead. As I said paxl was dropped due to the nerve damage & carbo seemed to keep doing as they hoped. But it wasn't to be. They gave me the option of oral tabs at home or intravenous Gem at day clinic. Not knowing much about the affects I chose Gem.. it turned out that obviously had no affect what so ever other than maybe maintain it for a bit. The oral med is basically my last option is my understanding as there has been no other funded meds in our system unless I have the brka gene?. I did testing & I don't. I did mention to my oncoligist last week before starting this 1 if going back on Carbo could be a option. He didn't say alot other than let's they this 1.
Sometimes it is really hard to cope with the pain but I think you're really brave that you're fighting with this situation and sharing your journey with us.
It must be really hard for you to bear the pain and living with the pain, I hope that you're getting good mental support of your family & loved ones and they must be taking care of you.
I hope that you'll not have any side effects of medications and you'll get well soon.
May I know in which stage of OC cancer you're and what has your doctor said regarding treatment time?
Best of luck with your treatment and always be positive!
To be honest I don't know what stage I am. All I know is even afyer what they felt was a success of surgery it has now in my liver and I show increase in size to my middle chest nodes. Recent scan also show a possible increase to 1 in my armpit as well. Although a very recent routine mammogram showed to be all clear...
I don't know why your doctor hasn't cleared about the stage of cancer, I think you must ask your doctor on what basis they are doing your treatment and why it is not getting any better? As you said that that recent scan has shown a possible increase.
I'll suggest to keep in touch with your doc and acquire knowledge about your disease and treatments as much as possible.
The possible increase in node , along with changes to what they 1st suspected to be just cysts in liver together along with the ca125 of 1500 from a previous ca125 done in November 2019 of 700. Based on that it was decided I should start another course of treatment, even tho I only finished 1 3 months earlier.. When 1st diagnosed I was told high grade or serious. I have been made aware it is terminal but not much more. I am not yet under a palliative team as yet as I havnt reached the stage were treatment is no longer a option.
If your doctor has suggested another course of treatment then you must go for it, I'll pray for you. It must be really hard for you to live with the pain, you're really a brave fighter. I hope that you'll be able to bear the pain until it gets any better, and you'll be fine very soon, Finger crossed!
I just wanted to know that are you satisfied with your current doctor and treatments or have you ever thought of getting the second opinion?
Matilda61, Blood testing alone cannot determine your BRCA status, it can only reveal inherited (germline) mutations. You must have your tumor tissue tested for acquired (somatic) BRCA. If you should have acquired BRCA MUTATIONS AND OR BE HRD+ that would open up a whole new array of very effective treatments. I wish you luck and energy to fiercely advocate for your own healthcare.
Matild. Good. I just wanted to be sure you're getting the best information possible. There are MANY clinical trials and new medications coming on line monthly. I am now taking medication that was not available 5 years ago when diagnosed 3C HGSE. Keep asking questions and get second opinions. ❤
Is it easy to seek a second opinion in NZ? If so, I would suggest that. A different pair of eyes looking at your scans could see things differently. All the best!
I pretty sure we can get 2nd opinion but it will have to be done through a private specialist. My current oncoligist had mentioned awhile ago when I was1st diagnosed if I wanted a second opinion & he could do a referral for but it will be at a cost. He has also mentioned other treatments but they are not funded here so they to will be at a cost.
If you have the means, why not at least go for the second opinion. If they recommend a trial, you would not normally have to pay. Travel is often included as well.
Hello,there’s nothing really that hasn’t been said!so good luck we are all thinking of you x
So sorry you have truly been through it...i hope this med helps you. Take care.
I am glad you shared your story. I am so afraid that my is back for the 4th time.
I never heard about this pills, Etoposide, it is alway great to share information so we can ask our doctors and be able to advocate for our selves.
Please keep us update in the results.
Help I’ve a new tumour while on chemo clear cell adenocarcinoma aged 40
CA125 count risen after 3 months remission
CA125
Does remission time get shorter after each recurrance?
