Hi ladies I hesitate sometime to write bad news as I don't want to upset any one but I've just returned from seeing my oncologist and the news was not good, I've been on single Taxol and it did not help at all my 125 went from 175 to 800 in 4 doses, so we stopped Taxol, 2 weeks later it is now 1300, the original tumor is growing and also the lymph nodes.
I'm now going on Carboplain and Caelyx on Monday I'm running out of options this will be my 4th line in 2 1/2 years, I have asked before has any one had success on carb/caelyx and how many or how long you were on it,I try to keep positive for my family but I'm finding it very difficult,Thank you lovely ladies I know I can post and you will understand......best wishes to you all Lorraine xx
Ps what do you think about secondary surgery,my oncologist is not for it,
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lorraine71-Australia
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No experience of carb/Caelyx but I send my prayers for you.
I read a presentation recently from Dr John Comerci (University of Pittsburgh hospital) which said that secondary surgery should only be completed if the patient is ok health wise, there are lesions the Surgeon can resect, they are relatively isolated, and there is a high percentage of success expected in the removal of cancer. Don't know if this helps, I know I've also read recently of some surgeries done successfully when the initial response was to not operate. Hopefully you'll get some replies with details.
Hi Clare, Thank you for replying as usual you give useful advice, I'm going to see if I can see the surgeon who did n my original surgery and get his opinion.
I know you have been going through some hard times so hope you are feeling better best wishes ,,Lorraine xx
Hi Lorraine...I don't have any experience of the treatment options...just wanted to send you a hug and to say that it's important to me ( and others I would guess) that warriors can post anything good or bad on here. I really hope you find the right treatment for you xxx
Yes we are here to support each other through ups and downs of this aweful disease . So sorry your treatment was not successful but don't give up hope . Your team have a plan in place and I am sure you will hear from other ladies who have been on this combination .
Sending you a big hug and positive vibes . Stay strong ( I know not easy ) and make plans for some treats inbetween your treatments . Love Kim x
Thank you Kim, The ladies on this site have given me so much helpful advice and encouragement, I'm glad to have had contact with you all..best wishes Lorraine xx
Lorraine I think Clare has, as ever, some good info so I will just support that. If I were you I would think about a second opinion, for treatment and surgery. I don't know much about which centre of excellence or equivalent is near to you but I'm sure there must be a way to find out. I'd go there for advice on options.
I'm sorry you are having to face this but I'm confident there must be more out there for you to try. I'm sending you my best wishes and hope you manage to get some positive time from each day.
HI Netti, Thank you for your reply, yes Clare has given me some good advice. I had a second opinion at Westmead hospital and the oncologist gave me the same treatment plain as Nepean hospital, I went back to the original oncologist she was ok with this. I'll give the Carbo/Caelyx a go and see how it goes,then look at my options. When you ladies post about the treatment plains on this site most are from US and UK, I do ask my oncologist about some of the chemos ,she has told me that some are not approved here yet ( Australia),
Hi Lorraine, I am so sorry to hear this but looking at your passed blogs you have been on Cealyx before is it the carboplain you haven't been on yet?
I have the impression there are a lot of different chemos on offer. I can see why you are worried it being your 4th line in only 2 & half years but I have read on here of woman having their 7th/ 8th lines. Is it possible to find out how many different chemos are out there maybe your team could try one of them. Also are you BRAC positive because that opens more options you could be offered.
What about a trial have your team suggested any that might be going on?
It's times like this I wish I had the answers at least you have the best brains money can buy like Clare & the lovely ladies on here. We might not be doctors but we really care & want you to get better.
As for surgery I feel what Clare has said sounds interesting could you ask for a second option on having surgery if your health is still quite good ?
Let hope something can be sorted out to get you in a better place. Keep us up dated we are all rooting for you take care love Cindyxx
Hi Cindy, Yes I have been on Cealyx before I managed 6 months and had some success this was around Christmas my 125 came down to 62, I decided to take a break over Christmas to spend a holiday with my family, my choice to take the break had a lovely time with my grandchildren.
When I came back my125 was going up so my oncologist put me on single taxol as I said my 125 is now 1300 in a short time. I also have had Carboplain this was first line treatment 2 1/2 years ago and had some success with it at the time so OC feels the two together could help, Sending you my best wishes and thank you for your reply..Lorraine xx
Hi Lorraine, I can see why they are trying Cealyx again if this doesn't have good results maybe they can offer you something your body has never had before.
Good luck for Monday let hope it starts getting your ca125 down.
This is my third line treatment & I am keeping my fingers crossed this one will work for me. I will keep my fingers cross for you.
I am off to bed now so I will pray for you & for all us ladies on chemo & other life saving drugs. Take care love Cindyxx
Good luck with the Carbo and Caelyx for Monday. You're in Australia if I remember so I'll think of you Sunday night here. There are lots of new things coming up all the time so I think it's too early to think you're running out of options. As far as I know, second surgery is only likely to succeed if there is just the one tumour not lots of small ones as well. I asked on Tuesday if I could have my lymph nodes which are growing removed but was told that not only did I need them, the side effects would be bad and wouldn't cure the cancer.
Hi Helen, Yes I'm in Australia the time zone can be confusing, we need more awareness of ovarian cancer here, February was ovarian cancer month and I found out most ladies did not know the symptoms. With my local chemist we had a morning tea to hopefully help with awareness.
As you said there are new treatments coming up all the time, I've found by being on this site and the advice about treatments to be very helpful, I do go back to my oncologist with a list of chemos that I have take from you lovely ladies, but also found that some chemo has not been approved here let hope that in the future together we can knock the beast in the butt.
Thank you for your wishes and I hope all goes well with your trial ,,Lorraine xx
I haven't had that combination. Weekly taxol didn't help me but the oncologist mentioned etoposide. Is that a possibility for you? Don't apologise for posting bad news. We are all at different stages in this journey and sometimes that does mean we need to say stuff that's not just positive.
HI Lesley, Sorry taxol did not work hope etoposide is the one, I will mention this to my oncologist, it does help to be able to post to ladies that understand the feeling we are going through, the ups and downs. I try not to be a sad sack in front of my family, especially my grandchildren but it can be hard to keep up a happy front.
Thank you Lesley for your wishes and advice sending you my best wishes..
Lorraine, you're not a sad sack. It's not healthy to hide the seriousness of this disease. Awareness is so low, that if no one speaks out, no progress will be made in the detection or cure for this malady.
Getting multiple medical opinions and understanding the facts has freed me tremendously. My family can discuss all their questions and possibilities both good and bad. We've left NOTHING off bounds. I've found this to be the most comforting way for me to deal with this horrific disease. Again, we each need to do what's best for us and our families. What frees me could devastate another. I'm sending positive energy your way. Tesla
Hi Tesla, I have support from my family someone always comes with me to chemo or when I go to my oncologist, I have one daughter who is always the full glass, but she has health problems with one of her daughters and this has been hard on her, so I try not to add to her stress, my other daughter can not handle bad news and finds it hard to cope. I know when I need them they will be there for me. I think it's lovely you can discuss this with your family in a open way. Even though I have never meet all the ladies on this site I have found comfort and encouragement when I've needed it.Thank you for your best wishes and sending my best wishes to you,,,Lorraine xx
I am struggling with the emotional side of this dreadful disease too. Please go easy on yourself. Sending you hugs and love and of course prayers that your next treatment is the right one for you! 💖💖💖
Hi Ann ,I read your posts and yes you have had some hard times also,the emotional side is is very difficult,I feel a bit better to day I will be starting treatment Tomorrow (Monday) hopefully this will give the beast a kick in the butt.Look after yourself and my best wishes.. Lorraine xx
Oh Lorraine, am so disappointed for you. Hope the next lot of treatment is more successful. I was considered for further surgery under the Desktop trial. After asking advice from the Onc and surgeon and reading the results of the initial stages of the trial, I decided against it due to the evidence at the time (2 1/2 years ago)- high risk of post operative problems, relatively small improvement in recurrence rate/time in comparison to chemo and the proximity of my daughter's wedding. I'll never know if I made the right decision. I never reached NED status with further chemo but am still here 😀.
I think it's always worth the effort of getting a second opinion if you are unsure. At best you could get a more successful alternative, at worst you have the peace of mind that they agree your current plan is the best one for you.
HI Sandra, I did ask my oncologist about surgery she was not for it but did say she would give me a referral to see a surgeon, I think I would like to see one if only to put my mind at peace.It is hard to know if some of the decision we make are the best I took a break over Christmas 12 weeks i spend the Christmas time with my family on a holiday had a great time and the grandchildren did not see me on chemo, when I came back my 125 and the tumor and gone up.
Thank you Sandra for your wishes.. sending you my best wishes and hope you will be around for a very long time,,Lorraine xx
Hi .. I can't offer you any useful advice but I still wanted to wish you well. This site is not for positive posts only, that would only be a false impression which would actually make people feel worse when they are not feeling too great.
The truth is.... everyone is struggling. Everyone has positive times too which is great, but no one feels positive 'all the time'.
Hi, Thank you for your post true it does help to be able to post to ladies that understand all your feelings positive or not, it has help me so much over my journey to be able to turn to all the ladies for advice and encouragement more then I can say.Thank you again and my best wishes to you,,Lorraine
Hi Lorraine - you've had some great responses above. For my part, I've been on carboplatin/caelyx for 4 treatments in total. I found it pretty do-able, particularly because the gap between was 4 weeks so you could regain some form of normal life in between hospital visits. Conversely, having tried that with limited success I'm afraid, I'm now being offered weekly Taxol - so it's the opposite to you.
As others have said, it does appear that there is no "right" order for these treatments, it's almost a case of trial-and-error which is not very reassuring when you start getting worried. I do understand.
What I would say is that if you're being offered carboplatin that's good - you're still deemed platinum sensitive. I've been told that this drug is the one that really does the work.
Unfortunately I'm now platinum resistant. Like you, I began to feel I was quickly running out of options and have rather modified what I've said to my family about it all. I began searching around for other options including asking for second opinions. Already I feel better. I've sourced a very senior oncologist at another hospital 50 miles away, who has suggested two trials. Importantly he has reassured me that things do change - even that platinum sensitivity can return! And although I was in the depths of despair about missing out on one of the newly approved PARP inhibitor drugs here in Scotland because I was no longer platinum sensitive, the very fact that I have a germline mutation (BRCA but not BRCA 1 or 2 - it's called a Variant of Unknown Signficance!) does make me "more interesting" in terms of trials.
So never think that all is lost. I do believe that this is actually an exciting time in terms of ovarian cancer research and new drugs are being researched. Surely it's just a matter of time for all of us! Hang on in there with me, Lorraine
HI Caroline , Thank you for your reply I hope the Taxol works for you, my oncologist has offered carboplain as I did have some success with it and also it was over 2 years ago,yes she has said that platinum sensitive can change.
I hope you manage to get into one of the exciting trials and see some great results
The desktop 3 trial was about secondary surgery. I'm all in favour of surgery over chemo because I'm reluctant to have chemo this time. my team have rushed through a PET CT to see if it's an option. ive had 3 surgeries in 5 years
Thank you La, it sound interesting, 3 surgeries in 5 years sound hard but if it has work for you I think that is great, so hope you get the out come you are looking for best wishes Lorraine xx
The Target Ovarian cancer article about Reccurence says this about surgery:
"Surgery may be an option if your cancer has returned. We are still waiting for the results of large clinical trials to see if this surgery is effective, but surgery is often considered if certain criteria are met:
All visible disease was removed at the first operation.
It has been at least a year since previous treatment.
Your surgeon believes that he or she will be able to operate successfully."
Chemo was restarted on Tuesday (2nd May) - slightly nervous as we didn't know what would happen after last months strokes etc. But it went well.
Chemo Day 5 now and hoping I can get through it unscathed today. Woke feeling a little off and took my temp - thermometer beeping but luckily under 38 and it's gone down again. Brother and sister were visiting today but I've said not to come, need to keep calm and quiet and just get through today!
I can speak which is great. A bit of an accent which is funny and if I get tired the words don't flow but when I think that I couldn't talk at all last month, well !
Chemo has been scheduled for the next two weeks too so you I'm looking forward to my week off.
Lovely to hear from you & read your update Clare and great to hear that your speech has been coming back too. Hope your chemo goes smoothly today and you enjoy your mini break from it all. You're in my thoughts xx
Hi Clare - great to hear how you're doing. How interesting about the accent! I've heard about this before. I do hope you continue to manage with your chemo treatment. Thinking of you a lot recently x
Glad about speech Clare. Must have been really frustrating.... I like the idea of an accent - a sexy Mediterranean one? Zha zha Gabor style or more Marlene Dietrich perhaps? Seriously I'm glad things seem a bit more on key.
I'm not bad ta very much. Another scan 23rd May to see if chemo now or later..... CA 125 well over 1500 but I feel fine but creaky.
So sorry to hear your news. I am only on second line but carbo/caelyx seems to be working well. After 3 cycles my half way scan showed no sign of the small tumours scattered through my pelvis and as you may have read I have recently had bowel surgery - the positive from that meant whilst opened up they confirmed there were no active tumours, biopsy showed dead or dying cells so I am having final 2 cycles to make sure. I've read that this combo hasn't worked for everyone but hopefully this has reassured you that it can work well. Good luck with your next lot of treatment xx
HI Beckyjh, Thank you for your reply it helps to hear that it is working I do understand we are all different but hope is all we have, I'm glad your news about no more active tumors also that the beast is dying, best wishes for your final treatment, Lorraine xx
Ah Lorraine I'm gutted for you that your treatment doesn't seem to have been effective this time. I haven't had any experience in what you're asking but I did want to add my support and well wishes. As someone else has also said, we are all here to help each other, in good times and bad so I'm pleased you decided to reach out. It doesn't hurt to debate and refer, amongst friends & especially those who have walked in your shoes. I pray you and your medical team agree on the best course of action going forward that you are happy with and I have everything crossed for more positive results to come.
Hi Jemima,Thank you for replying I'm feeling much better to day I will start my new treatment to morrow (Monday Australian time) and will feel like I'm doing something to give this beast a kick in the butt hopefully.
I can't start to tell you how all you ladies have help me through this Journey, day and night when I've need advice or encouragement this is where I have turned to.
When I read the straggle some of our lovely ladies are having and some at such a young age it cuts to the heart. I pray for a better future for us all.
Thank you again Jemima, after all the lovely reply I will cheer up..Lorraine xx
Hi Lorraine. Fingers crossed for this new line of treatment. Will be thinking of you on Monday (Sunday eve UK time). Sending best wishes and a virtual hug Jo 🌸🌹🌷🌼🌻
Hi i am just restarting chemo, 3rd line treatment like you my ca125 has gone up. My tumours are small spread out so no big tumours to remove. I did have more surgery for a large hernia i had to fight for it. Also my ca125 started goung up afterwards. So we are on the journey together . I am determined to keep fighting. Will be having caelex. I hope not to lose my hair.
Hi Antheamary, Thank you foe replying yes this is some journey we are on ups and downs but we keep on with the fight, I hope Caelyx is the one for you. I had 6 months on Caelyx 1 every 4 weeks some of the side effect were hard but I managed and had some success, this is why my oncologist is trying it again,this time with the carbonplain, I did not lose my hair on Caelyx.
Someone has said she thinks second surgery is only done if there is only 1 tumour. In February of this year, I had surgery to remove 4 recurrent tumours. One surgeon said no to surgery, but a second opinion was sought, & that surgeon said he could do it, though it was risky for me for a number of reasons. He was able to remove all the cancer he could see. In the 4 years before this operation, I tried 3 types of chemo, & 4 types of hormone therapy. Do you know whether your cancer is hormone responsive? If it is, this can help some people for a while. I was on one type of hormone treatment, Exemestane, for a year, till it stopped working, & it only involved taking a tablet a day. Two of the others I tried didn't work at all for me though. Di
HI Di, Thank you for your post, I went back and read your post 5 operations !!
I found this very interesting I will make this a subject with my oncologist if she is not for it, I think I'll still push to see a surgeon. also I will ask about the hormone treatment, I don't know if I'm hormone responsive or not. You have given me a lot to think about. sending you my best wishes and hope this last operation is the one. Cheers Lorraine xx
Hi, Thank you for replying and for your best wishes, I did look at your last post to see how you were going but it was 8 months ago so I hope all is well.
Hi Penny, Glad to hear from you and that so far so good. I have had my second carebplatin and caelyx no result yet my oncologist will send me for a scan after the 3rd one..Best wihes keep well Lorraine 💙💙
Hi Lorraine I'm in Australia to I was given carbo / caylex for my 1st reoccurrence and had 12 months Ned am now just on Caylex and have had 4 rounds have my next scan in 2 weeks and depending on results may be having radium treatment So it's always a waiting game Hopefully you will have good results from your treatment xox
Hi Cathy, So glad to hear that you had some success with Carbo/Caelyx, I hope you have more success with the Caylex, also that your scan results are good.
I'm on the combo on Monday I'll be glad to start treatment, I'll think to myself give it to the beast,if I'm having a hard time maybe it will be also. it will make me feel better knowing that.
I've be b doing a bit of gardening to-day knowing once I start I might not have the energy, it's a beautiful day here in the mountains
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