No side effect at the moment, should I wait before going back on chemo

HI Ladies

Managed to finished my 6 caelyx not quite the result I would have liked my 125 was 75 6 weeks ago.

My oncologist gave me a 6 week break over Christmas, going to see her Monday she did say maybe 2 more caelyx or next chemo would single taxtol would be the next one to try.

At the moment I feel alright depending on my count on Monday I would like to hear from anyone one who has waited before starting chemo again.

Maybe one of you lovely ladies have some advice on this subject.

I've Just be watching the news and you are having some really severe cold weather over there, here down under we are having 43D ...109 F.

The summer here finishes middle of March, roll on Winter.

Cheers to all

Lorraine xx

26 Replies

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  • Hi Lorraine

    My oncologist here in northern nsw says there is a debate around whether chemo should be started on the basis of the numbers or the symptoms ie how you feel; or indeed once you have the disease whether ca125 should be monitored at all because it causes so much anxiety. I recurred in September 2016 and am having regular ct scans, no ca125, and we have agreed I will start second line carbo/gem when I start to get symptoms. In the meantime I'm trying to enjoy every day and keep smiling (often through tears). Off to tassie for a holiday in a few weeks fingers crossed I stay well enough.

    It's such an anxious time for you, sending hugs and best wishes Dawn x

  • Hi Dawn,

    Thank you for your reply, It is a anxious time for us all. knowing if you are doing the right thing,

    Like you I will talk this over Monday but it's good to have the experience of the ladies on this site.

    Enjoy your trip to Tassie I've been there it's a lovely spot and a lot cooler then Sydney, I live in the Blue Mountains and yesterday hit 40D

    Keep well Dawn xxx

  • Good luck on Monday with whatever you decide - it will be what it right for you at this time.

    42 degrees here at the farm yesterday!

    Dawn xx

  • Hi Dawn,

    Went to cno to-day my 125 was 75 before Christmas had my break when I went back to day it was 65 had gone down a bit felt good about that.

    Asked cno about her plain she would like me to wait 6 weeks if I feel I can wait this is ok with me, and in that time have a full body scan and new blood test.

    Then we can decide if 2 more caelyx or go on to taxtol.

    Cheers dawn

    Lorraine xx

  • Enjoy your treatment break - do whatever it is that makes you smile with whoever makes you smile most!

    If at any point you don't feel well or the symptoms increase or change then go straight back to your team and bring forward your appointments.

    I have my next ct scan and onc appointment in early March, but under strict instructions to beat the doors down sooner if I don't feel well.

    Very best wishes Dawn xx

  • Hi Lorraine, I have been in pain all the time while having oc even when I was in remission. I kept complaining about the pain the doctors only showed interest when my ca125 started going up. Even then they were happy to wait before offering me more chemo. I on the other hand wanted to zap the cancer as soon as possible.

    It is true what Dawn has said some doctors are not offering ca125 & are waiting for symptoms but because I am in pain all the time it would not work for me. How I see it is you wouldn't get on a bus if the bus driver was blind so if they have a tool like the ca125 which can give you an idea of whats going on why not use it. I would be more anxious if they didn't offer it.

    Good luck for Monday take care Cindyxx

  • Hi Cindy,

    That is not good having pain all the time,

    I can understand what you mean about knowing what is going on with the beast.

    I have been having chemo for 2 1/2 years lots of side effect but in all that time I have had no real pain to talk about, The reason I went to see my GP in the first place was only because I was putting so much weight around stomach

    Had back pains but like most thought just old age.

    Thank you Cindy for your reply hope 2017 will be a great year for you.

    Cheers Lorraine xxx

  • Hi Lorraine, I am happy to hear you are not in pain. No one seems worried about the pain I am in. I was in so much pain in my rib cage last night I haven't slept. I am on acide reflex tablets but they don't work.

    I wish you the very best for 2017 take care Cindyxx

  • 85live4ev, I read your post and I too have pain for years under my right rib cage. I cannot sleep on my rights side at all. I have been complaining of this pain for years before I was diagnosed with cancer. Nothing seems to explain this pain. They just look puzzled and no one can explain it. Hope you find some relief.

  • Hi Bluehen, yes I know what you mean. The reason the doctors are not worried about the pain is because my ca125 is low at the moment. I have had 28 cancer treatments so they blame it on that. A hot water bottle does help.

    Hope you can get an answer to your pain one day. Take care Cindyxx

  • Hi Cindy,

    I have been lucky in that way, I had Carbo/taxtol twice and had the usual side effect, hair lose and my energy level was really bad could hardly get out of bed some day, then had caelyx keeped hair, had a bad rash, blisters my toe nails fell off but my energy was good ,I still managed to go to my part time work.

    Some of the post I read the ladies have all that and have much ,much more to handle .

    It's has to be hard for you to have this constant pain on top of every think else, it wares you down I hope you can find someone who can give you some relief.

    Cheers look after yourself

    Lorraine xx

  • Hi Lorraine, so far I have been able to keep my toe nails. My hair is still falling out 3 months after chemo. We have all been through so much but the most amazing thing is we carry on!! Take care Cindyxx

  • Hi Lorraine I think watching and waiting is a 'personal' issue. I can't and have never done that. My Oncologist says that she knows me well enough to know that I have to start straight away and that's due to my mind set. I have to do something, maybe I'm a control freak, but it's the same in all areas of my life, something goes wrong, even something simple and I have to deal with it. I hate the thought of any issue getting worse when I could have done something about it earlier. That doesn't make that decision right, just right for me. I suppose what I am trying to say is do what feels best for you. I wish you well. Kathy xx

  • Thank you Kathy,

    My family always said I was too independent and a bit control freak also.

    That comes from being on my own from a early age,

    But I must admit since having cancer I feel so lost sometimes I'm not my usual self.

    As you said you have to make your own decision in the end but the advice from this site is always a great help and comfort.

    All the best Kathy for 2017.

    Cheers Lorraine xx

  • Hi Lorraine - my CA125 readings started to rise again in March last year and I definitely knew the cancer was back after a CT scan in June. Like you, I questioned the wisdom of another chemo treatment (I had 6 carbo/taxol in 2014) as I had promised myself never to do it again (I know, I know...) and also I was feeling absolutely fine. I definitely was in a state of shock at first and needed some time to accept what was happening inside me.

    I discussed with my oncologist whether it was best to start chemo right away. She made it clear that this was very much an individual choice. In my case, the scan showed low levels of cancer activity and the advice was that the chemo was better given "when there was something to really work on" and also it was preferable to have as long a gap as possible between treatments.

    Personally I waited another 5 months to start again on caelyx/carbo. This allowed me to have a summer doing things I wanted to do without the regular hospital visits. I fully accept that this was borrowed time, and have not regretted my decision. It was right for me, but equally I was psychologically able to work with a watch-and-wait period and not everyone can or indeed wants to.

    Wishing you all the best - whatever you decide!

    Caroline x

  • HI Caroline,

    After my caelyx my oncologist gave me that 6 week break, so I'm sure it has to be good for the body

    The good thing about caelyx was it was once a month, Taxtol is every week

    How did you go on the Caelyx

    It is hard this is my 4th chemo in 2 1/2 years I seem to have been on chemo the whole time, but we keep on fighting,

    Thank you for your wishes hope 2017 is going to be all you wish for.

    Cheers Lorraine xx

  • I suppose its a personal choice perhaps have two more Caelyx and then have your break I think that would appeal to me more. You dont know how low the 125 may go with two more and in fairness the result hasnt been bad. This is my opinion

  • Hi Suzuki

    I am leaning to asking for the 2 more Caelyx hoping it might bring it down a bit more then have a break before taxtol.

    When I started the Caelyx my 125 was 127 it went down then up then down which seems to be the normal thing with Caelyx finished at 75 I know this is good compare to some ladies 125.

    After I finished the caelyx my oncologist told me it would not come down to normal I asked what that meant and was told I would have 12 months, I was so upset.

    But then decided I would see other oncologist so in that 6 week break I did.

    He suggest the taxtol would be the way he would go.

    when I go back to her on Monday I will tell her what he said and see what she offers.

    Thank you Suzuki I always get helpful advice.

    Cheers for 2017 and the best of wishes to you

    Lorraine xx

  • Hi Lorraine, I agree with you, I dont think I would ever refuse chemo, I have had it three times and through this, I had family stuff, ie my son and daughter in law lost their babies at 26 weeks and then went on to have a little boy who is now five and a half. Now there is another little one on the way so yes I will do it all again without hesitation, I know some sites on facebook people give out about the toxicity but I have no regrets. I suppose you have to see what your own oncologist comes up with. I think Taxol does come after Caelyx over here anyhow. But if you can manage to get two more Caelyx from your existing onc then stick with him and then move to the other one. Or whatever you feel in your gut to be honest, Gut feeling is good at times

  • I'm quite anti chemo and have been having this conversation recently. I'm reluctant to have chemo and will leave it as a last option. I'd really want to know what it can do for me. If it just makes me sick then it's stolen time. A miracle cure would be better

    LA xx

  • Hi Lily- Anne

    Yes we all hope for a miracle cure.

    But till then we can only fight and that is a very personal decision, one you can only make for yourself.

    I at no time was reluctant not to have chemo yes I've had side effects not good but still manage to keep my part time job and most important spend time with my daughters and grandchildren, if you were to ask me has it been worthwhile

    yes is my answer I'll take the stolen time.

    I intend to fight as long as possible.

    Do as much research as possible for you to make the right decision for you

    I wish you all the best for 2017

    Cheers Lorraine xx

  • Hi Lorraine,

    Absolutely agree, we all make the decision based on our personal needs. I had chemo in 2013 and in 2016. I'm not sure I would want to go through chemo again but a difficult decision, I was very ill with Carboplatin. I researched chemical therapy before making any decisions, I was a journalist reporting on the NHS in the 1990's for a national newspaper, so it's a second instinct to delve first. When I was diagnosed in 2012 I researched OC but was too dumb struck to take a lot of it in. My youngest was 13 at the time. I now feel much better informed but still unsure as to my next step.

    Good luck with your decision

    LA

  • Hi Lorraine,

    Your situation sounds quite similar to mine. I was diagnosed 3b serous in December 2014, Ca125 250. After surgery and 6x carbo/taxol I was in remission. Relapsed after 11 months, had 4x gem / carbo, which worked at first but then stopped. Switched to Caelyx and have just completed 6 cycles, my Ca125 a week ago was 72. My onc is quite optimistic, he is hopeful I will remain stable for some time so no need to try any more chemo for now. I am still on Avastin though, so my Ca125 will be checked every three weeks when I have that. He will start chemo again if I start having physical symptoms and/or a scan shows spread, not just on the basis of the blood counts. I intend to try to enjoy the break, and the longer you can stay off chemo, the more treatment options you have. Have you had any scans? You don't mention that. I had one yesterday to give me a benchmark for the future.... 🤞

    Spes x

  • Hi Spes,

    Thank you for replying yes we are quite similar, I find your reply was interesting to read your onc feels you can wait.

    I will see my cno on Monday and have a decision about waiting.

    My last scan one was before I started the caelyx 6 months ago so I will ask for one

    before I start treatment.

    AS you said staying of chemo for as long as possible has to be good for the body

    and options.

    Cheers best wish.decide decision

    Lorraine xx

  • Yes, if I were you I would definitely push for a scan, it will give you a much more precise picture of what effect the Caelyx has had than the Ca125. Good luck with whatever you decide!

    Spes x

  • Well that seems like a result. My CA 125 was much higher and caelyx was stopped after 4 infusions and I'm now on weekly taxol. It's been ok, side effects not bad at all. I have 3 weeks on and then a break for a week. I went straight onto taxol but my CA 125 was nearer 2000! I guess it depends on what your scan says as well, but I think there is an advantage in waiting and getting yourself fit before starting again x

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