I'm having a wobble today. Went to see my onc for a check up before my 6th and final Caelyx and carbo infusion or what I thought would be my final....
Had a scan after number 3 and it showed the fluid in my lungs had gone and the tumours had stayed the same size so no growth and my ca125 had gone from 625 down to 275 so all encouraging. My latest ca125 has shown a rise to 674 and my oncologist thinks the cancer maybe growing somewhere. I have been scheduled for an urgent CT scan and new bloods.
She has said that if the scan is still okay I will have number 6 as scheduled, but she told me she was very concerned. I've had a terrible time on Caelyx I'm laid up for two weeks at a time due to feeling crap and getting shingles every cycle within a few days of having this regime, I feel cheated that for almost 6 months I've felt bloody rotten and possibly for the bugger to still be hanging in in there causing me grief!
I really enjoy my job and my boss has been great letting me work two weeks at a time, with the thought that come January I would be done with chemo and would no longer need so much time off. I'm so worried it's not going to be good news and I've been informed I'll need weekly taxol if the scan shows growth, what will happen then?
I'm struggling to remain positive and feel really tearful at the prospect of yet more of this damn chemo 😓
It's all a bit pants!!!
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Emalou71
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I had an awful 6 month on Caleyx and like you i was laid up for 2 weeks. It was a struggle remaining positive and coiolebof times felt like giving up but carried on thinking that it would be worth it. I got my results and I only had 30% reduction. I was shocked and so disappointed but had to shake myself and get focused again. It ended up it was enough to get me on a trial so had to be positive.
Cancer is still on my liver and stomach but I've remained stable for the past 10 months. My ca125 continued to fall after the end of the Caleyx. Hopefully this gives you a bit of hope and helps you see that this could just be a hurdle for you xo
Thanks Julie, and I'm so pleased it's staying stable for you long may it continue.
I'm hoping the CA125 does come down but I'm sure the scan will have the answers. Ive always worn my positive hat during my journey with this disease but yesterday and today feel wretched and my mind is going into overdrive with scenarios and the like. I know I need to snap out of it but feel quite crap!!
It's only natural to feel like this. Some days the panic just overwhelms you and the mad scenarios in your head don't help. There are days I feel like this then wake up next morning and can laugh about the crazy places my mind goes to. Hope you're feeling better today xo
Hi Emalou I was in your position in April I finished 6 caelyx/carbo had a terrible time on it ,at the end scan it showed progression in an area, so i had some radiotherapy but that didn't work as it was hard to get to, so I was offered like you weekly taxol or hormone tablets so I opted for hormone tabs to give me a break from chemo,i have a scan booked this month to see how things are, onc said if it's still growing then like you back on weekly taxol,then I think like you what next after that your so right it's bloody pants this disease 😟x
Well my original tumour was eostrogen receptive which means the estrogen hormone was feeding it, so the hormone tablets block the hormone in the hope the tumour can't feed from it so it would only be worthwhile for someone who's tumour has this my onc said it was worth a try so I will find out when I get my scan result x
Hmm, not good to be left with your Oncologists words ringing in your head either, pity she didn't just say "Right we will get you a scan to see how you are". You've been feeling poorly and have had bouts of shingles too which is horrid and I'm sure that will have affected your CLA result to some extent too.
Work wise you are covered by the disability act from the date of diagnosis which may or may not help however until you get your scan results you won't be able to have a 'next steps' discussion.
I don't know what type of work you do or if you have any formal return to work, sickness schemes there etc. I was fortunate in that I had full pay for 5 months before going onto half pay and I was off work totally from mar 8th to Aug 29th. Suggest you see what your results are and then have a discussion with your boss, see what is possible etc. I understand that weekly chemo can be easier to manage however I have no experience of it myself so hopefully someone can share their experiences with you. There are many chemo combinations to try - all I can say is that try to knock your scary thoughts back when they loom (I know that's easier said than done), concentrate on the NOW. Your scan date will soon come through, hopefully a speedy Onc review too and then you will know for sure what your choices are.
I'm sorry I can't give you any help, bad thoughts are the pits, the absolute pits to try and cope with. Thinking of you and sending you a virtual hug for what that's worth. Give the nurse a call on the free helpline on this site as that may help too.
Bless you, that is really pants. If it's any small comfort at all I had all my taxol weekly (I did the ICON8 trial) and it really wasn't too bad at all. Good luck with the scan and fingers crossed for a speedy result so you know what your dealing with. Try to be positive, sending big hugs & lots of virtual hugs. Jane ❤️xx
I was ok on the taxol, slight nausea but the anti sickness drugs sorted that pretty much, it made me a little weary but nothing that can't be dealt with, there is a cumulative effect over a period of time but still it wasn't anything too bad at all. The only thing I would have done differently was to have had a line fitted, towards the end of the 18 weeks it was getting more difficult to find a vein to canulate in, could just be old veins 😂. ❤️Xx
I had 4 carbo and caelyx..not doing what it was suppose to do so .they switched to weekly taxol...had 3 now and this is my week off...next week I'll find out if its working..and start again for another 3....I'll probably do that 6 times if it is working....Hang in there!! The onc told me with carbo and caelyx it takes about 3 or 4 to kick in but my CA 125 was fluctuating after 4th ...so on to taxol.....I can understand you getting tired of it all....with taxol I feel a bit nauseated but I take the meds and ginger gravol and drink ginger tea..good for belly... whether I need it or not..more a prevention....weak spells and tiredness which are common..but everyone's different.....didn't lose hair with caelyx but now with taxol...head is hurting so going to shave it off today..Im in Canada but it sounds that they use the same chemos wherever...same line ...carbo taxol, carbo caelyx, taxol....who knows what's next...
..waiting to find out what's what....yes I understand - it's like.walking on a tight rope...im going to buy a new hat today.....If you can, do something nice for yourself today...even if its reading a book...I find it .takes your mind off it for awhile.....all the best!...Hugs
Ah thank you, I hope you got a nice hat? My lovely husband took me for an overnight stay in a lovely hotel was just the ticket to try and chill out xxx
Good luck with the scan; it would be a pity to go through all this only for it not to work at all. Maybe the shingles have elevated the CA-125.
Try not to allow worry too much about work yet.
All the best!
Helen
Hi Judy I was on Caelyx and must admit didn't work for me so went onto weekly taxol, I tolerated it ok, I had 18 weeks of it and when I got to about 12 I was tired, rested when I could though! You've been through a tough time with shingles on top of treatment.
Good luck with the scan and wishing you all the best
Had a call early today and I had been given a slot for the CT scan, all done this afternoon results Monday! Trying to keep positive but I guess it's going to be a long few days xx
Hi, I can't offer any advise on weekly chemo or Caelyx as I haven't had either of those. I just wanted to say I am in awe of you contuining to work whilst going through chemo. Shingles is known to reappear in times of stress. My mother first took it when her mother died, she took it again after my sister died and then again after my father and her brother died in quick succession. I wonder if you didn't work whilst going through the chemo would your body react differently, just a thought!
Hi Anne, maybe it is the stress that's bringing the shingles on I try hard not to stress but I so pose with everything going on we do stress 😳. My job has helped me focus on something other than the disease which has been good for me, probably not my boss though lol I'm seriously mrs chemo brain xxx
Hi emalou, I was given caylix but after my third treatment was taken off it as it wasn't working for me. was put on weekly taxol and I have not been too bad on it apart from swollen ankles and feet and feeling a bit tired. I have only two more to go, my last one on the 16TH of December then probably have a scan. like you I am wondering what is going to happen. praying that I will be in remission for a while. I have been having treatment since last year when I found out I had ppc. Avastin didn't do for me nor caylix. Though it's hard I am trying to keep positive. will probably be given a scan when treatment finishes. Sending you big hugs and hoping all goes well for you. lots of love Julie xxxx
Hi emalou - I've only just seen this & although I can't offer you any advice, I just wanted to send you a huge virtual ((hug)) as I know how frightening a time this is. Lots of love and oodles of positive vibes. Jemima xx
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I'm sorry you're going through this and sending positive vibes and love your way.
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