IS IT BACK AGAIN

[ALEXANDRAJACKSON]

I was diagnosed with stage 4 ovarian cancer and i have been in remission for 6 months , and now my ca125 has shot throught the roof the problem is that i have had a pet scan and its clear so we have no idea what is happening but i know its back . any advice would be great. thank you

[Whippit]

Hi Alexandra

I'm sorry you've got this going on. It's a tough time when there's some indication the tumours are on the move again but it doesn't necessarily mean you will have to have more treatment straight away. Sometimes there's a case for watch and wait but depends on each individual case and what is the best plan for you.

I had a PET scan in the run-up to my second line of chemo. They were looking to see whether surgery would be helpful but decided against it. I was pleased to have it though as I knew they'd been really thorough and looked at every possibility.

Let us know how you get on. Don't ever feel you're alone. There are loads of us here who've had relapses and are still doing well.

Sending love and hugs. xx Annie

[charleee]

Sorry you are struggling but hope all goes well. My onc appointment 29th so dreading it. I think I let my imagination run away with me sometimes but always seem to have something wrong with me. Not yet 2 weeks since radiotherapy to shrink mass so am not sure if its that causing stiffness in back. We all worry, its normal, but still here, still relatively mobile and still looking forward to my new grandsons birth in February. Good luck. Love Carole xx

[Lindy2014]

I`m stage 1v as well and my ca is now gone up only finished chemo last summer dont now what will hapen to me yet, i wish you well you lindy x

[ALEXANDRAJACKSON]

thank you all for you kind comments , i think im struggling with it all just no this time last year i really did think it was the end for me and i really gave up.

and then i had lots of treatment and got better ,having been well for 6 months and had the most amazing christmas and new year i feel like i lived several in one.

now i feel i have given up i can seem to shake myself out of this one so sorry to be writing all this but i dont know who to talk too

[positive in reply to ALEXANDRAJACKSON]

I have stage 4 PPC and in September started my 3rd line after only 6 months remission yet again. Unfortunately after two months and several abdominal drainages it was obviously not working and I began to feel I might not see Christmas however started a new regime and I am so much better so don't give up. Annie is right it may be watch and wait so start thinking of something or somewhere you would like to go and enjoy.Good luck and thinking of you on the 29th.

Love Sue x

[LovingNana in reply to positive]

Hi Positive,

Can you tell me what your treatments were that worked better? My grandmother is stage 4 Primary Peritoneal as well, and she has been on a combo of taxol/carboplatin which the dr has indicated is not worked as he hoped for. He said it could be a "stubborn tumor". Her CA125 levels started at 9800 with her first dr, and have gone down only to 3300, and 3400 at her previous chemo, the smallest change so far. They have also not done a PET scan on her, as they say it "is not indicated", nor any MRI. I am a little worried that they should be changing course, but since both dr's she went to have said this is the best treatment, we aren't sure what to think. Would love to hear what worked well/better for you.

Jessica

[ALEXANDRAJACKSON in reply to LovingNana]

yes i was on taxol/carboplatin too . its so hard to try and get your head round stuff im sorry probably much help to you

[positive in reply to LovingNana]

Hi, I was diagnosed in 2012 & started Carboplatin alone which gave me 6 months remission and my CA125 went from 9,000 plus to normal. Then I had Carboplatin & Taxol and only had another 6 months remission. I started Caelyx in September this year but after 2 treatments my oncologist and I decided it wasn't working so I changed to Carboplatin & Gemcitabine. I have had a very good response and CA 125 down from1200 to 400 after two & I have no ascites now and feel a lot better. I only have CT scans. I hope this helps and my best wishes to your grandmother. Sue x

[ALEXANDRAJACKSON in reply to LovingNana]

i wish your grandmother much hope

[Hidden]

I understand why you are so down and it it a worrying situation, can you ask for a ct scan to double check, Maybe as Annie says they are adopting a wait and see approach but it is normal to be scary. We are here for you on this site. Maybe you could contact a cancer support group near your or the macmillan nurse to talk out your fear and worries. Try and stay positive and if you need more chemo although it can be uncomfortable there are drugs out there and hopefully new ones coming on board for us all. Be gentle and kind to yourself, sending you best wishes

[ALEXANDRAJACKSON]

hi thank you all again i have been for my results again today and my ca125 has gone from 35 to 298 in less than a week the plan is it now to do a ct scan and a ultrasound and another pet scan in 2 days . i truly dont know what to think , if anyone has any ideas i would be really greatful if anyone has any ideas . you see ive been here before as many of you have and i truly do not know what to think or do i just have a constant fuzzy buzzing in my head.

[ALEXANDRAJACKSON]

they have now told me it could be mirco and they may not show on a pet scan so may do a ct scan

[Whippit in reply to ALEXANDRAJACKSON]

Alexandra, I was really concerned hearing you are feeling so worried and nobody you feel you can talk to about this. Have you phoned the Ovacome Nurse-Led line. They are really the best people you can talk to because they have medical training and are experts. We're all just patients and few of us can offer much more than moral support on any issue apart from sharing our own experiences.

Please do think of ringing them. They are so supportive and will have some practical advice too. Please don't stay in on your own with all this spinning round your head. The no is 0845 371 0554.

Love and hugs xxx Annie

[ALEXANDRAJACKSON in reply to Whippit]

thank you annie i have now rung them and i am feeling much better and thank you for your lovely kind words love lexy

[Whippit in reply to ALEXANDRAJACKSON]

Whilst this is a cursed disease I'm struck every day at the warmth, compassion and companionship this forum generates. I've been a member for nearly four years now and have learned so much from all the different experiences and information here.

Have you got a Maggies Centre or a support group nearby? If you're not sure you can put up a post here - or just post to find out whether there are any women living near you so you can meet up. I've met so many really lovely women through this forum. It's good to meet face to face because we're all in the same shoes and share the same concerns. I've also met interesting people getting involved with different activities. I'm being sent to Paris next week to a meeting about ovarian cancer. It just shows there are some very exciting things to do and some very wonderful highlights to be enjoyed.

xx Annie

[thesilent1]

Hi Alex, you have been given some good advice and lots of support already. It is scary stuff facing a recurrence. I have a recurrence at present and am currently on watch and wait. My oncologist recommended after my initial raised blood result in August that I do not request the results during this time as they will only be going in one direction, up. She said it would just make me even more anxious. I have followed her advice thus far. In December she gave me the news that there had only been minimal growth of the tumours and they could therefore leave me for a another 3 months so scan again in Feb.

Initially my head was all over the place too, but as time has gone on I have got used to it and I think accepted that its back. I am thankful that as yet I don't require further chemo and I'm not looking forward to the day when I will have to start it, who does I suppose! I think its the side effects more than anything else that I dread as I did suffer quite a lot first time around.

Like the other ladies have said, there are lots of treatments out there and lots of research going on too, we just gotta hang on in there and have hope. My recurrence came after just 8 months and I was so disappointed with that, I had been hoping for at least 18 months. I think the disappointment is hard to deal with as what you have just been through is still quite raw! But hey, I got through the year from chemo ending and on 16th Jan will be 13 months, maybe I will make it to 18 months before having more treatment, I just don't know, but what I do know is I can't give up and nor can you. Be strong, give yourself time to come to terms with what is happening and then face it head on. We are all here to give you moral support and as Annie has said, give the Ovacome nurses a call if you need some medical advice. Don't forget you can always contact your nurse specialist too. That's what she's paid for after all! Good luck. Ann xo

[ALEXANDRAJACKSON]

ann thank you for your message it really means alot to know all you guys are here and we can support eachother thank you

[cancer48]

Hi Alex like Ann and the wonderful ladies in this site they have given you the best advice ,am at stage 4 will not give an operation because of a blood clots ,finished my first line of chemo in June and my cancer 125 has fallen and raised and this can happen when dead cancer cells enter the system or if there I an infection ,please keep posting and let us know you are ok ,sending you lots of love Annxx

[ALEXANDRAJACKSON]

ok so here gos what they have said is there seems to may have been some dead cells that didnt show up on the pet scan , and they have caused me to get somekind of infection and that has raised mt ca125 so far thats all they have given me

[ALEXANDRAJACKSON]

which seems really strange anyone ever heard of anything this i am stage 4 cancer sorry not sure if i mentioned that

[Lovis]

Hello. They couldn't see my cancer returning on the scan until the recent one despite the CA125 going really high. They now see very small disease coating things in the abdomen and sticking things together but they wouldn't treat me even now if I had no symptoms. I'm now getting back ache and discomfort in my lower abdomen which is unpleaseant so I'm starting chemo soon, caelyx and carbo.

Don't panic as there a lot of drugs out there now. Lovis xx