Recurrence: Having a rant really bear with me... - My Ovacome

My Ovacome

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Recurrence

Casamimosa profile image
7 Replies

Having a rant really bear with me. long story short. Have survived stage 4 ovarian cancer so far had 6 chemos then ultra radical surgery then 3 more chemos and just over 2years on olaparib. Ca125 went down to 10 but has now crept up to 175. Ct scan showing activity in the lymph nodes in tummy area. So change of treatment. 6more chemos. Not looking forward to that! I am sooo.. frustrated my body is doing this. I actually feel well!! . I know I should be grateful and my care has been and still is great. I am being positive hoping as I feel so much fitter than in 2020 that this time chemo won't be as rubbish. I was always told it would come back but I was hoping a bit longer before having to face this again. I was getting used to feeling normal. Been told this will work but won't have the maintenance drugs after which is a bit scary. Thanks if you got to end of my rant.

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Casamimosa profile image
Casamimosa
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Irisisme profile image
Irisisme

Hi Casamimosa,

I’m so sorry to hear of your recurrence . Here is a good place to have a rant, there are many who will understand. Many will have been through recurrence. We are all different and no two journeys are the same, but many have similarities. Rant away, I know that feeling!

My journey started in 2016 and I’m now 4th line. I never had the all clear but I’ve had stable disease followed by progressions, and now it’s in every lobe of my liver.

However, I’m nearly at the end of this course of chemo (Crisplatin & Caelyx this time) and there has been reduction of the lesions.

While they are still offering you chemotherapy there is every hope that you too will get to the point where your disease is stable - maybe even No Evidence Of Disease. Of course you know this even though it’s not to the forefront of your brain right now. It may improve and recur again but having time to enjoy life becomes more precious when time seems short.

When I think of all the things I’ve done and enjoyed in time I never thought I’d have I just feel marvellous and so lucky. I’m sure you felt lucky when you got the all clear and in time I hope that feeling will come back to you, but for now RAGE at the sky, rage here - but don’t rage at your loved ones!

RANT ON Casamimosa. I wish you Good Luck 🤞 and send you a hug 🤗

Iris x

Alice77 profile image
Alice77

Hi. I share your feelk gs. Eight chemo cycless8

Alice77 profile image
Alice77

Sorry,my previous reply was cut short and set in error by cat paw! I have a recurrence just over a year since my last chemo and eighteen months after ultra-radical surgery, which as in your case was preceded and followed by chemo . I have been on Niraparib since last April and had been hoping for a longer remission but it seems to have stopped working and my CA125 is rising so I have been told to prepare for further chemo befoe the end of the summer. Like you, I am feeling pretty down about it all, not least because I had just passed the side-effects stage with the Niraparib and have been feeling well, sleeping well, eating well. I found the response from Iris really helpful and I know that I should be grateful to be offered further treatment, but it is just so depressing after all that I have been through over the last two years. I think that the important thing is to try to focus on the positives but allow ourselves the odd rant! Best wishes and I hope your chemo goes well.

Lyndy profile image
Lyndy

Hello Casamimosa, it’s a real blow when it returns after you have been through so much during your initial treatment.

Might there be an option to watch and wait for a bit if you are feeling well in yourself? If the disease is only in the nodes you could get the summer to enjoy yourself and then have chemo in the autumn/winter?

This might make you feel that you can have a bit of a break to prepare and maybe get some nice things in before having to knuckle down again.

I hate the idea of having chemo in the spring or summer when I want to be outside enjoying myself. Psychologically it just feels that I have some control over the timing. xx

Irisisme profile image
Irisisme in reply toLyndy

Lyndy, you make a good point, like me delaying the start of my 4th line for a few months so I could be in Spain with my family who live there👍 it made no difference and the chemo is still working.

Iris x

Casamimosa profile image
Casamimosa

Thanks every one for your support and hugs. I have decided to go ahead with chemo starts on 11th, sooner its zapped sooner I can get my life back and carry on. I am confident I can cope better as I know the drill and I do feel much fitter etc etc hopefully that will be the case and I'm not kidding myself. Enjoy rest of bank holiday.im going to enjoy next 11 days and get prepared. Watch this space

Irisisme profile image
Irisisme in reply toCasamimosa

Good Luck Casamimosa🍀🤗 keep us posted 👍

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