Yesterday I went for my avastin treatment. They've cancelled it indefinitely as they say it's not doing any good.
I had a CT scan two weeks ago and the results of that are clear. I have no symptoms yet being as my CA125 has been slowly creeping up (it's 113 ) they've told me something is going on. They've said that I'm having a recurrence but it's too small to see. They'll scan me again in two months. They said they will put me back on taxo /carbo again probably in 3-4 months.
I cried my eyes out. Ive only had remission for just over 6 months. I wanted a couple of years.
Why are they going to put me back on chemo ? There's no tumour yet. Can't they wait? I might not need chemo for a long time
I'm confused, thoroughly depressed and bloody scared .
Xxxx
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Suzanne333
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Hi Suzanne. Having a recurrence is scary and confusing but they probably wont put you back on chemo until they see something on the scan so that could be a long way off. there is nothing to say that your next remission wont be longer next time round. After my first recurrence my remission was approx 18 months, this time its 4 years and counting. I know its hard but you did chemo before and you can do it again (hopefully not for a long time). Sending you a big hug, I know just how you are feeling right now, Kathy xx
Thank you for your message. You are right I know. I'm just terrified. I always think of and relay your story to people. You're so positive. You've had recurrences and are still here 9 years later. You always inspire me. I know there is hope but at the moment I just feel so low. Doesn't help that my partner was made redundant two weeks ago. Day of my scan funnily enough.
I guess when we have this, life doesn't really go back to normal.
No it doesn't go back to normal, we have to find a new normal and that unfortunately includes feeling terrified at times. No wonder yr feeling so low having to cope with this and yr partners redundancy, all makes for an uncertain futre. What you do have is today, which is all any of us have, nobody is guaranteed tomorrow..... I really wish there was something I could do or say to make you feel better,. xx Kathy xx
Thank you Kathy. I'll be ok. I'm pretty strong and positive but I'm still feeling shocked. Feeling a bit hopeless but it will pass. I know they have many treatment plans but I keep thinking that if I recur quickly each time then they'll run out of things to treat me with.
I must think positive and not let this insidious disease take over my mind as well as my body
Thank you for your messages they always do help xxxx
I'm so sorry. I too have had an early relapse at 6 months and stopped avastin in a similar manner.
You are doing well, start looking forward to the year and two year landmarks and then 'bang'.
It's a new landscape that you didn't want.
Instant positives are that there are treatment options. You are on watchful waiting which actually will become freeing. They have an initial treatment plan. They 'have you', they are keeping an eye on you. You have two months to enjoy life without treatment. It's summer - although the weather doesn't know - enjoy the long days.
Rushing at treatment when there is a subtle relapse doesn't help. So try things you enjoy. yoga is good and biologically reduces the key stress hormone. It could help stabilise the active cancer. Diet, exercise and relaxation can help. We all read how people manage to stabilise the cancer or slow it's growth.
Also they wait gives you time to seek a second opinion without being rushed. Always worthwhile especially as no active cancer is showing on your scan - you never know.
I know it's not easy. I think my relapse was worse than diagnosis. I try and focus on the positives- it helps some of the time. Good luck x
Sounds like a plan. It's about cherishing the health and life we have now. It's just hard when we have a limited life. But so does everyone without cancer, they just don't know.
If you read Nickys (Nicky100) post from yesterday, I also have all her feelings. If you have Never contacted penny brohn you might want to. Lots of support to live well with cancer and enjoy life.
They also give advice and maybe controlling it. They give the data on how we can make a difference. They advocate whole organic when you can diet, exercise and quote the research on how it helps and teach techniques for relaxation as stress can be a driver.
Take care x
Hi Suzanne, I was on Avastin, (14 in all) but my ca125 has been rising since March, but as my scan showed NED, my onc kept me on avastin as it was delaying the need for chemo, only when my ca125 reached 1375, and my scan showed evidence have I stopped avastin and started chemo (3 weeks ago). I really think keeping going on the avastin would delay the need to start chemo again so soon, but maybe they do things differently here in Spain. Try asking your onc nurse what she thinks. This is my third line chemo, and I just finished second line last August, so it hit me a bit, but on the positive, it is much easier to handle once you get started as you have done it before and come through you can do it again, Good luck and I hope they can put off the chemo for many months to come! xxxx Jeanette
Sounds like a plan. It's about cherishing the health and life we have now. It's just hard when we have a limited life. But so does everyone without cancer, they just don't know.
If you read Nickys (Nicky100) post from yesterday, I also have all her feelings. If you have Never contacted penny brohn you might want to. Lots of support to live well with cancer and enjoy life.
They also give advice and maybe controlling it. They give the data on how we can make a difference. They advocate whole organic when you can diet, exercise and quote the research on how it helps and teach techniques for relaxation as stress can be a driver.
Am so sorry you have had this news and can totally understand how you are feeling . Listen to Kathys advice there are many ladies that get longer remission after second line and also good things happening with parb inhibitors even for non BRACA . ( sorry can't remember if you are BRACA or not ) I'm still waiting for my results . You got through the chemo before and can do it again . I meet up regularly with a lady I met at the Ovacome day who isn't on the forum and is midway through her third line in almost 5 years . She is tired but coping well with chemo and CA125 responding, always busy and still doing her swimming , yoga and walks and looks great .
You CAN do this and you may not need to start chemo for a while yet .
Our journeys ( hate that word but couldn't think of alternative!) have been similar and I'm waiting for 6 month CT scan result so I do know how devasted you must be feeling . I've had pains in my back left side when lying for last 2 days ( similar to those I have had before ) and convinced myself it's back despite last CA125 being stable .
Been waiting to get on a 'fear of recurrence course ' at Guys as one in May was cancelled and funny thing is I got dates same day my backache started!
Not sure I need it now as I think I have accepted that it will be back at some point .
Stay strong , enjoy the fact that at present you have no symptoms and are feeling physically well and don't let this S **T disease rob you of any more good days through messing with your head .
Sending you a big hug , love and best wishes Kim x
Thank you for your message Kim. I hope you will be ok.
Yes I'm BRCA2 positive. I think there's a treatment they keep in reserve specifically for that. A tablet apparently. They want to put me back on taxo/carbo six lots. Same as before. It might only give me the same amount of remission again. Will lose my hair again. I don't know why they don't try something else next time.
It's all so worrying.
I hope your scan results will be ok. Am thinking of you. Xxxxx
I suppose they are telling you this as it's very early stages and best get it before it goes too far. I'm of the mind that if it comes back it's treatable with chemo. I do feel for you not having the remission you wanted or would of liked but be positive and think that at least they are on to it and looking out for you xxxxx
Hi Suzanne. Your story is exactly the same as mine. We have been told that the CA125 marker can rise for a number of reasons. My marker rose to 170 but is now flattening off. I am due to see the oncologist on Monday for the results of my latest scan. I have previously been told that my scans show that I too am clear of the disease, however I have a cyst that is slowly reducing in size. Other people have stated that cysts can be one cause of a rising marker level. Fingers crossed. Stay strong. Sue
I guess I am in a similar situation as you, but my most recent scan actually confirmed some 'nodules' (too small to actually measure, so am guessing around 0.5cm). My oncologist is now referring me to the Royal Marsden, because, as Agility says, I have the luxury of time. The house isn't burning down, I know what's going on, so I have time to seek a second opinion from a more experienced cancer centre. Yes, chemo is a strong possibility (in my case maybe carbo/caelyx), but it's not right now. I have time to mentally prepare, and physically prepare - I want to make sure my body is well nourished and strong enough for the challenge ahead.
No denying it's a crappy situation for the both of us though 😕
I'm glad you are going to the Marsden. I've heard great things about them. I might see if I can go there.
I guess I have time before chemo. There's nothing on the scan and I feel as fit as a fiddle. I'm seeing week after next the top consultant lady as the doctor I saw yesterday doesn't give me a lot of confidence and reassurance.
Please let us know how you get on. Keep strong. Xxxxxxx
Of course you are scared but there is life after recurrence hold on to that thought. So for now do something nice before you start back on treatment. Focus on getting out and about. Its never easy but we have to try
Felt like I was reading what I would post! I am BRCA II and believe I am recurring. Finished first line in December '16 and end of June ca125 started rising. I have been a mess ever since. Last ca125 (last week) was 73 so my surgeon ordered a scan (which my oncologist didn't want me to get because of a trial (PARP vs placebo) I am on (90% sure I am in placebo group --or better be!) and although promised a call yesterday, still have no idea what is going on. (Wish the docs would get it together with that empathy thing and know a call would have been nice!)
But like you, the sheer panic of recurring this fast and the worry that means they will run out of options sooner rather than later, is just how I feel. I have always been an "in control" kind of person and as we all know here, no control at all over what our OC may or may not do.
It is actually the stories here--the longer remission second time around--the stories of people who had a few relapses early on, then nothing for years that give me hope. But no one but no one can understand the feeling of fear of return like we do.
I tried hypnosis (didn't work) and yoga (cannot do it) but now in a mindful meditation class that is working. I get a respite for about a half hour (while doing it) that then lasts awhile. I swim every morning and focus on enjoying the swim (and being able to!) I feel fine.
Just wanted you to know you are SO not alone and so glad you can share how you feel and know you have us to vent to. Sounds to me like you are in very good hands and I love the advice to wait ---think of it as another day without chemo and another day you can do as you wish, enjoy, be with loved ones, etc. We all have an expiration date, we just faced that reality a bit sooner than others start to. Doesn't mean we go sooner, just that we are more aware and have (maybe) a few more challenges.
Thank you for your reply. Your story is so very similar. My last CA125 was 113, the one before that was 74. It's beyond frightening. No one can even begin to understand how we feel. I feel disconnected sometimes from the world. My world feels different. I felt like the floor had been pulled from under me and I am in a deep hole. I'll never be out of that hole.
I've got to try and be strong. All of us on this site face a horrible predicament. Physically and mentally. It's so tough.
I am thinking of doing yoga. The mindfulness thing you are doing sounds good. I will see if they have one locally.
I hope for a longer remission the second time around but they will give me the same chemo taxo/carbo. It might only give me the same amount of time again. Ok it worked before but it wasn't very sustainable.
I'm seeing a top consultant lady week after next and hope she can give me more positivity and resssurance.
I wish you all the best. Let us know how you get on with everything.
I will let you know and please do the same. If they suggest different treatments I will share that too but think the carbo/taxol combo is assumed for 2nd line, especially with BRCA II (among others). Did they say weekly or are you going to do every three weeks? I have read on this site many are doing the once every three weeks. Just curious. And I won't really have a choice as I know my docs feel what they suggest is best anyway. But I will still voice my preferences!
Yes it will be three weekly again. I did well on it regarding side effects. I wasn't sick etc just got very tired. It's just such a blow.
There is a tablet treatment for BRCA1/2. I asked if I can have that but they save it for later. I know they have many treatments but scared there'll run out of options eventually.
OK--just remember immunotherapy trials are ongoing and showing promise. It may be a couple of years before they use them like they are PARP inhibitors now (maybe the tablet you refer to) but ALWAYS new things to try. Take care!
We are in the same boat except for my Ca125 is 700 from 35 in March, I finished chemo on March 10th so short remission when I really believed I would have a long one. Hope to have scan soon.
Hi Nicky. Yes we are in the same boat. I really thought I would get a few normal disease free years in. I'm sorry to hear you've recurred too. Let's hope the next remission is a lot longer.
Keep in touch. Wishing you luck with your scan. Xxxx
Have your oncologists said they will go ahead with chemo based on rising CA125 alone? I only ask as my oncologist won't!
So I'm just thinking, that potentially there may still be nothing to see on your CT in a few months and it could alter the plan. No one can predict what may happen.
You could potentially have a good number of months before you need to re start chemotherapy. The good news is that you are still platinum sensitive, meaning they are able to go for carbo/ taxol again. Before the alternatives are suggested. Not forgetting all the new drug possibilities on the horizon.
I feel for you. My markers are in the 130 range ( though only ever went to 119 ) and i am really trying hard to ignore these numbers and focus on my CT scan showing nothing as yet!
It's hard, but you can do this with lots of support and encouragement xxx
Thank you for your message. Yes they said that my rising CA125 is predictive if a recurrence and they say I will definitely be having the chemo again. Probably in 3-4 months time. Like you say though, if my scans still show nothing then they can't really give me chemo.
I've arranged an appointment with the top oncologist lady and hope she will give me more reassurance. I've no symptoms although through worry now I'm feeling physically sick.
Hello suzanne333 and all those in a similar position including myself. Finished second line chemo in May and never achieved NED like the first time. Had 12 months between first and second line chemo and Avastin. Like all of you I was hoping it would be stable for longer second time around. This unfortunately is not the case and the small tumors that were left increased by 10%. They have now stopped the avastin for me as well. However I've decided I want let it stress me out as that's not helping at all. It's business as usual. Seeing the oncologist next week but I would like to hold of on the chemo as I feel perfectly okay. I would like to wait till I get symptoms. Treating early does not mean your survival rate gets better. I'm just gratefull that there are still several other lines of chemo that can be used to help me live with this disease for as long as possible and hoping that maybe I'll get a longer break after the next chemo as some of you have achieved.
I wish you sll the best my fellow warriors abd keep us posted on any progress.
Thank you for your reply. It's disheartening isn't it. There are positive stories out there. They have lots of treatments in reserve. A certain treatment might be the one to give us a very long remission.
We all have to keep hoping and keep positive. We all support one another which is so important.
Hi my dear sorry you are struggling. What crap news for you...I totally get how you feel. I cried so much when I found out.
But..they have a plan for you. FOCUS on that plan and that they are cracking on with things.
You do have the right to wait if you feel your intuition tells you that, BUT they will know well what they think is best just now.
Maybe you could go back with more questions for them? And base your decisions around that? That is what I did. I asked for the nitty gritty and timescales...and I felt much more in CONTROL OF MY HEALTH. It then became MY choice and I owned that decision.
Being at the mercy of their decisions is making you feel helpless and vulnerable which is completely normal. You can diffuse that by arming yourself with knowledge and finding out more. They need to give you more facts and more information.
Whatever you decide, they are offering to help you asap and if you wait, you may risk further growth.
It's so tough isn't it. I guess I thought I'd get a few years before recurrence. It just really confirms now that I have cancer and will always have it. I wanted to be able to say I had it. I know it's incurable but I wanted it to go away go as long as possible so I could forget about it.
I'm going to see the top lady oncologist week after next. I do have many questions. She's very nice and very reassuring so I'm pleased I've arranged to see her.
Suzanne, didn't fully realise your status when replying to you about the cold cap. Don't know how I'd feel, possibly exactly the same. Want to just say, try & not let your thoughts run away with you, easy for me to say I know...don't know if you're interested, but lots of great reading material out there to help with mindset. Explore & find what works for you. Seek out what you can do to help yourself. Heard a great talk/video today by Sophie Trew who organised Trewfields - a health/cancer related festival the other month. She gives me real hope that Drs will start to be much more holistic in the way they treat cancer patients, & give us the empowerment, we are seeking, rather than taking everything out of our control.
Hope your positivity lifts a little. It's trial & error to find what works for you ❤️🙏🏼❤️
Suzanne I never had a remission as such, my CA 125 just kept going up,steadily, and never went below 151. Avastin was stopped because in England I understand several increased results in a row mean you are no longer considered to be responding and so funding stops. In my case I felt ok about stopping it as it just gave me nosebleeds and aching feet.
I had 2 scans, one showing very little just some nodules, and the second one showing more activity both in the nodules and sticky stuff near the bowel. That made the oncologist recommend chemo. This was also because I had a once in a lifetime memory making trip to the USA planned so they wanted to make sure I was able to go and not end up in some American ER department.
The reason I am telling you this is that you asked for positivity. I'm now just over half way through that memory making amazing trip to the USA with my sons and husband. I had chemo right up to 10 days before I flew out to New York, will have chemo when I get home again (carbo taxol) and know that it will have probably started to grow again while I've been away.
But I feel ok, I am having the time of my life and so is my lovely husband and so are my boys. We have kayaked on Yellowstone lake (I was in a two person kayak and my husband did most of the paddling but hey, I did it!) and today I cycled 14miles along the rim of The Grand Canyon. I have had to take it easy at times and I will not be white water rafting with the rest of my family but I feel so glad to be alive! Recurrence or no.
My CA 125 went down from 2885 at the time of the first chemo of the second series, I had a bad reaction to carbo, this was managed and I carried on. After 5 sessions my CA125 was 684!!! High but really reduced. I'm sure it will be back up to a ridiculously high number again but I don't care because I got this holiday and soon I will resume the chemo which will, hope to God, reduce it again. This is a war of attrition and we all do it as best we can.
I really hope this sounds as positive as I intended it. I'm sitting in my hotel room looking at deer in the pines, about to go eat lovely food.
Thank you for your reply and yes it did make me feel a bit better.
I'm sorry about your avastin being stopped etc but wow you are doing so well. You are certainly not letting by this horrid disease stop you from doing anything. Well done. Brilliant attitude.
Your holiday sounds amazing and I'm so glad you are getting on with it and really enjoying it.
Keep in touch and enjoy your lovely holiday. Xxxxxx
I'm so sorry to read your post. I can only try and imagine how you are feeling. We constantly live in fear of a recurrence but try to push it from our thoughts , stay strong and carry on with life. But when it happens it must be devastating.
I'm 3 months free and just had my 2nd blood test after chemo so waiting for results. But in my heart I expect a recurrence at some point. I dint know whether that's how the best way for me to cope or not.
But you had great results from your first treatment so there is no reason not to expect the same again. It's the watch and wait that must be so hard.
I've tried to listen to all the advice you have all given me. That we have to live each day. One day at a time. I'm trying really hard to do that now. And I have to say it helps. None of us (even people who aren't living with cancer) know what will happen at any given time.
There are so many treatments out there. So much they can do to help you. We only have to read all these posts to see that.
Please try and stay strong. Please just see this as just some more treatment to help you on your way again.
And keep reading all the positive posts from everyone on here. Knowing that everyone is here for you.
Look forward to reading your poem. So glad you are feeling more positive today. I always read these posts before I go to bed because night time is the worst for me. Going to bed on all this inspiration helps!
Hi Suzanne. After seeing my onolgist, I too have come off the Avastin and back onto chemo. The latest scan showed some subtle changes that lead her to believe that my disease had relapsed. I am approaching the treatment with determination. I got through it once with favourable results and can do so again. I believe that you can too. Please update me with your progress and I will do the same. Good luck. Sue XXX
I'm sorry you are in the same boat as me. It's so disappointing. I've not started chemo yet. It will be the same chemo as before they said. They're going to do another scan in eight weeks. They say I'm recurrring as my CA125 has always risen while in avastin.
Please let me know how you get on. I'll be thinking of you.
Maybe the chemo start is not set in stone as much as it would seem right now? Mine was cancelled a day before I was due to start.. as it was felt that watch & wait was more appropriate at the time (maybe different though because mine is a borderline/low grade OC).
Others have suggested it, and I would throw my hat in with the second opinion crowd. You could have someone else look at it closer to the time, and only then make a decision. And live well until then.
Yes I think they will probably wait till the scan shows more or I get symptoms but if they know it's there I would think maybe zap it early. That might not make much difference though. Mine is 3c high grade.
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Help needed
Halfway through, cold cap and scan results
I wish I could get a break
Advice needed please 
Please send me some positivity.
