BACK IN THE GAME AGAIN

I had my first 3 month post chemo checkup a few days ago, only to find out that the cancer is back. CA 125 is 700. I have a scan on Monday and will get the dreaded results telling where it is located on Thursday. I think finding this out has almost been worse the second time around. Next chemo drug will be Caelyx. I am so depressed and all I can think about is that the Caelyx won't work and that will be the end. I'm so scared about dying now. I was so positive when I went through this the first time. I just can't seem to get back there. Help! How do all of you who have had a recurrence get through the uncertainty and depression? Also, if you have had Caelyx, what are the symptoms you've experienced? Thanks so much warriors. I appreciate any comments you have. Thanks - Kim xo

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  • Hi lovely,

    It's a horrible shock, my special person was really depressed and disappointed with herself when she found out and although she wasn't in fighting mode her body was she's now classed as dormant so coming from 1st hand experience please know there is EVERY hope and new treatments are becoming available every day.

    Good luck with the next stage of your Teal journey xxx

  • Thank you so much for such a meaningful post. This gives me hope and is helping me feel better. Was this a recurrence for her as well? Thanks again - Kim xo

  • Yes this was a reoccurrence (her first one) which is why it's now classed as dormant rather than remission which personally we prefer this term as it gives us hope but at the same time keeps us in reality that it's still there and not going away xxx

  • Thanks for replying so quickly! I like that the term dormant as well. It definitely gives hope but keeps you in the reality of it. Kim xx

  • Hang in there Kim I am going on my third recurrence I see the Doctor tomorrow - from the beginning my Doctor told me that Ovarian Cancer never goes away but can be managed - so the way I keep positive is that I don't look at having Cancer as a death sentence but I look at it as an physical illness that needs maintainence attention every year or so! Hang in there and there is nothing you can not get through

    !

  • Thank you. This does make me feel hopeful. I have heard that Ovarian Cancer is treated as a chronic illness, but my oncologist painted a bleak picture. I am trying to find my 'one day at a time' and positive outlook I had when I was first diagnosed. Kim xx

  • Like you, I recurred within three months also. There are many drugs out there and new ones coming all the time, that even if your fear that Caelyx won't work is realised, your oncologist will have other drugs to offer you. Good luck with your results on Thursday, and I'm thinking that once your treatment is in place you'll regain the positivity you had first time round.

    All the best! Helen

  • Thanks Helen. I'm so glad to hear from someone who has had the same experience with a way too soon recurrence. I think I'll feel better once a treatment plan is in place too. Kim xx

  • I agree with the ladies once you start treatment you will feel much better about it. I am waiting for full bloods including 125 results. Have had a good break but I know my time could well be up and I might be on treatment again. No OC symptoms just tiredness etc so hoping against hope. There is always hope

  • Thanks. You are right - there is always hope. Fingers crossed your CA125 has not gone up. You have a great positive attitude. I will get there again eventually too. Kim xx

  • I know exactly how you feel, Kim. I am just ahead of you having had the first cycle of Caelyx/carboplatin for my recurrence. It is desperately disappointing to get the news it has returned. You will adjust. Think if it as a chronic disease that has to be controlled and managed.

    Stay strong and positive, I wish you all the luck in the world. I will follow you - keep posting.

    Janine x

  • Thank you Janine. I agree that thinking about it as a chronic illness is the way to go. I am trying to be strong and trying to get back to feeling positive. Thanks again and keep posting so that we know how you are doing too.. Kim xx

  • Hi Kim ,

    Like you I had a early recurrence,I started this journey near 3 years now. I'm on my 3rd line treatment which has been Caelyx, this was for 6 months one every 4 weeks.Yes it was not easy first month was great , second month rush all over my body and blisters under my arms, I told my oncologist that I did not won't to reduce the dose so before each treatment I was given steroids, that cleared up both also had and steroid cream on the blisters,

    As the treatment went on some of my toe nails fell off and my hands were stiff and sore,but I kept my hair, I also still managed to keep my part time job which help a lot because when I was at work I did not have time to get depressed.

    NOW after all that the Caelyx has helped, I managed and I'm a wimp so you will be ok.

    I took a break from chemo over Christmas this was my chose, we had a big family Christmas and wonted to be able to enjoy my daughters and grandchildren and also for them to see me looking better.

    I know my 125 is going up but this week I will be back on Caelyx or my oncologist might offer single taxol. I know that I have options and you will also.

    Do ask me any questions you need to REMEMBER WE ARE ALL DIFFERENT AND WILL REACT TO EACH TREATMENT IN OUR OWN WAY.

    Hope you are feeling more positive Lorraine xx

  • Thank you so much Lorraine. I appreciate you telling me about your journey. I'm so glad the Caelyx worked for you. I am hoping for the same. That is wonderful that you got to enjoy a big family Christmas without being on chemo. I may get in contact with you once I start on the Caelyx. Thanks for offering to answer any questions I have. It's very kind of you. Best of luck with your next round of chemo. Yes - reading all these replies is making me feel more positive. Kim xx

  • Hi Kim! I'm so sorry to read it may be back. I had carbo/taxol for first line treatment and found I was platinum resistant so went straight into second line of doxil/avastin. (Caelyx is Doxil in the US) I remember how shocked I was to find out 'the best' drugs for oc didn't work for me and had to start the secondline so quickly. I had many of the same feelings you shared.

    However, after I had a good cry I put on my fighting armour and jumped back in. My GynOnc helped me to view it not as a terminal disease, but rather a disease like heart or kidney....where it can be managed for years and years with proper treatment.

    I've just completed 3 of 6 cycles of Doxil. To date I've not experienced any of the horrible side effects that some do. They put ice on my hands and feet while doing the infusion and I am very careful for 5 days after treatment to wear loose fitting clothing and not get overheated.

    You will do great! Pleaes don't hesitate to ask any other questions you may have. Many hugs!!

    Jodi

  • Thank you Jodi. It is helpful to hear that you had many of the same feelings I have had. I need to put on my fighting armour too. I am usually a positive and strong person. I am glad to hear that you are doing well on Doxil. Thanks for offering to answer any other questions I have. I may do that. Kim xx

  • Hi Kim. I'm in a similar position to you regarding scan except that I'm still waiting for my appt. I'm on 2nd recurrence and having 4th treatment today, but ca125 is rising so looks like I could be resistant to carboplatin. I too felt depressed when I found this out last week, however, with time to rationalise info and the support I received here, I do feel somewhat easier about the future. We all say try not to worry too much (!!) - as others have said there are treatment options out there. Will be thinking of you. Ali xx

  • Thanks Ali. I appreciate you sharing you experience with me. The support here is great, and I am definitely starting to feel better after reading all the replies to my post. I will find my strength and positive attitude again. I'm so glad to hear there are other treatment options. My oncologist made it all sound like doom and gloom for me. Thanks again Kim xx

  • My Oncologist keeps rubbing his hands together whilst telling me my cancer is 'very aggressive' and can go (and has gone) 'Boom'.

    I just have to laugh!

    Yes I find it funny but can understand how others would find that scary. I can't change anything but I can control my reaction and I choose positivity.

    Clare xx big hugs for you

  • I love your attitude Clare. You are so right that we can't change the disease but we can control how we respond to it. You are a fighter! A true warrior!!! Kim xx

  • Hi Kim, I too am with you on this one. I was Ned on 3rd Jan after first line treatment of Carbo/Taxol and optimal debulking. CA 125 was 38. Last week I ended up in A&E with a CA 125 of 529 and a significatly changed scan confirming it is back. Back with oncologists tomorrow for plan B. There are many lovely ladies of this site who have been there before us and there are options. I am trying very hard not to worry about tomorrow today, not easy but it helps. If I try hard to concentrate on where I am right now it helps and being busy. That said I have hardly slept for last few days! Best of luck this week. I shall be interested in what your plan B is.

    Lesley

  • Thanks Lesley. I had a CA125 of 14 at the end of November. Now it is 700. I have a scan on Monday, and I'm assuming I'll get my treatment plan at my oncology appointment on Thurs. I am so happy to know there are options. My oncologist made it sound like my options were few. I am finding if I keep busy, or get together with friends that I think about it less. I am also trying to get back to a 'one day at a time' frame of mind. I too have had trouble sleeping the last few days. I will post about my treatment plan when I get it. Thanks again Kim xx

  • Thinking of you too Lesley. Another one of our clan having to be patient while our treatment plans are sorted

    Take care

    Clare xx

  • Thanks Clare, should get more idea of plan B this morning. Anxious times!!

    Lesley

  • Did you get your treatment plan Lesley? Would be interested to hear what it is. Thinking about you....Kim xx

  • Hi Kim, thank you for asking. I do have a treatment plan. I am to be starting on weekly Taxol next week. The oncologist did discuss Caylex as the usual 2 nd line treatment but she felt that for me that it was a riskier option. My cancer is around bowel and it can be harsh on the bowel. She hopes I will get symptom relief from weekly Taxol. I will be reviewed after six weeks.. She did say several times she was very worried about me, the bowel could pack in altogether and she didn't leave me feeling very hopeful to be honest.

    Is your plan in place too? When are you starting treatment?

    This is such a horrible place to be, at least we are not alone..

    Lesley X

  • Hi Lesley I'm glad to hear you have a treatment plan. I totally get what you mean about the oncologist not being very hopeful. That is how mine was as well. I got 31 responses to my post from women who have had second and third line treatment, and have experienced remissions, and it helped me feel so much better. What I learned from all the posts is that everyone is different, there are many treatment options, and there is always hope. You are right we are not alone. I felt so alone until I joined this support group. Having OC is horrible, but we can take comfort in knowing we are all here together fighting this bastard disease. I am here for you any time you want to talk. I find out where my cancer is and what the treatment plan is tomorrow. I'm sooooo anxious, but I'm trying to be strong. I will let you know how it goes tomorrow. Thinking of you Kim xx

  • The anxiety is so difficult to get of grip of. I had a very large glass of port and a sleeping tablet last night and at least got some sleep. I hope you get something positive to hang on to tomorrow!

    Lesley x

  • I agree Lesley! It is 1:15 a.m. Mar. 2nd here in Vancouver, Canada, and I have had a few glasses of wine and I'm now headed to bed hoping this wine will put me to sleep. I hope I get something positive tomorrow too! I'll let you know how it goes Kim xx

  • Hi Kim, I have been thinking about you. How did you get on, have you got your plan "B" yet?

    Lesley x

  • I have had 5 rounds of caelyx, carbo combination . The first few for me were not too bad . Agree you need to wets loose clothes or the itching can leave a nasty rash . I have been very tired ince my fourth one, but I put this down to getting a chest infection so taking longer to pick back up.

    I was ok when told about recurrence, as I was sort of expecting it. But when into a meltdown a good few weeks later.

    Wishing you a lot longer ned second time round . xx

  • Thank you for telling me about your experience with caelyx. It's good to know you didn't find the first few too bad. I hope I have a longer ned this time too! Kim xx

  • Kim, I'm so very sorry to hear this :( You've already had some fantastic responses so all I can really add are my thoughts and best of luck with your appointment on Thurs. Remember to write down all your thoughts and questions to take with you so you don't become so overwhelmed you forget anything. You've fought this bugger once, you can do it again and you've got us all here with you.

    Jemima xx

  • Thanks so much Jemima. I will write down all my questions for Thursday. I'm dreading that appointment. Yes - I have fought this bugger once and can do it again. I'm so happy to have all the support of all you wonderful women on this site! Kim xx

  • I was told I'd recurred last month. 5.5 months after finishing 1st line treatment. Admitted to A&E and then hospital for 3 days with Ascites, blood clots on lungs, abdominal pressure, CA125 of 2292 (highest at diagnosis was 30!). In abdomen according to CT scan. Currently waiting to see if I meet clinical trial criteria so am getting on with my day to day life (albeit now changed) and calm breathing until I hear if its the trial or weekly Taxol (platinum resistent) and my treatment can actually start!!

    It's a bummer and I feel for you, I am usually calm but was quite agitated as I thought they all had it wrong so I send you loads of positivity and hugs.

    Haven't thought about dying so try to get those thoughts out of your head. Concentrate on getting as strong as possible for your next treatment. I'm on Fortisip supplements and a special low residue/low fibre diet due to Ascites (was drained 3 weeks ago but it's back again!) and I am getting used to eating differently to get my strength up.

    Thinking of you

    Clare xx

  • Thanks so much for all the great advice Claire. You always have great advice for all of us on this site. I am so sorry to hear about everything you have been through! That is a lot!! I will get myself strong for the next round of treatment. I hope they drain the Ascites for you again soon. I know how uncomfortable it is as I have had it before too. Thanks for al the positivity and hugs. It is greatly appreciated. Thinking of you too Kim xx

  • Hi Kim. So sorry to hear it's back for you. I was on caelyx/carbo for 2nd line. Caelyx is a bit of a bugger. Make sure you're ready with the laxatives. That will probably be just the same as last time. My first dose of caelyx wasn't too bad. Then my 2nd dose was not so friendly - had a dreadful ulcer on my tongue - all food for around a week had to be blended down. It can give you problems with your hands - sore and weak. Your skin seems thinner and it can give you a croaky voice too. After my 2nd dose problems, my onc reduced the caelyx dose by 10%. I coped OK after that. Still had the side effects but all at a manageable level. I'm still in remission 17 months on. I'm so grateful to be well. You did it before and you just need time to get used to the idea and then you'll stare it in the face and deal with it again. You won't lose your hair - maybe 10% but it's not enough for anyone to notice. Good luck for Thursday. Pauline

  • Thanks so much for telling me about your experience with caelyx Pauline. I really appreciate it! 17 months remission is fabulous! I am trying to be positive, and I'm prepared to go to war again. Kim xx

  • I am in the same boat as you Kim. I had bevacisumab after my first lot of chemotherapy. I was feeling really well and then the numbers went rocketing. Due to have the first cycle of carboplatin/caelyx tomorrow and I just can't stop crying. Reading everyone's posts is helping a bit though.

    Diane

  • I'm so sorry to hear you have a recurrence Diane. I too cried a lot when I got the news of a recurrence. Now I am doing ok. We have to keep fighting!! Reading the posts here are very helpful and make you feel a little better. I hope everything goes well with your with your new chemo. Kim xx

  • Hi Kim. I'm probably just going to echo what so many wise women have already said but just wanted to let you know, yes, I am another one in this surprizing boat! Finished first chemo in January and in May started getting some symptoms and by June had my scan results showing it was back and quite agressively so straight on chemo. I'm on a different combo than you Cistplatin/Gem and it's quite tough so far but I've made my mind up I'm getting through it and you will get this through this too. Once you get through the shock it gets a bit easier I think and I agree with you it's just as bad as original diagnosis as if you're like me I was so hopeful that I was somehow going to be OK and was back at work getting my normal life back and then WHAM!...but we can get there again and I hope all goes well for you. Love Mary xx

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