Hi I'm new : I was diagnosed with stage 4 ovarian... - My Ovacome

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Lesley1961 profile image
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I was diagnosed with stage 4 ovarian cancer last July. Finished Carboplatin in December felt good for 3 months but now it's back. Started Caelyx last Friday does anybody know how long it takes to start working? Thanks 

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Lesley1961 profile image
Lesley1961
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14 Replies
Choski profile image
Choski

Hi Lesley1961, I'm not able to answer your question but I'm sure there will be many replies to you soon. This is a very caring site and lots of lovely ladies post so please hang on in here. 

Take care

Clare X 

vonny1960 profile image
vonny1960

Hi Lesley I don't know how long it takes to start working, but caelyx is a slow working one, plus it's stays longer in the body as far as I'm aware.

Lesley1961 profile image
Lesley1961 in reply to vonny1960

Thanks for replying to you both x I've been getting asistes more this time I've been drained twice in the last 4 weeks now my stomach is starting to swell again :( 

Millie-c profile image
Millie-c in reply to Lesley1961

Oh dear not nice when the ascites fill u up with fluid, you have my sympathy. I think it can be drained as many times as is necessary so although that is not the nicest of things at least it can be sorted. 

When I started chemo my ascites didn't return so as soon as this type of chemo starts working  most probably this will prevent a reaccurance.

I don't know anything about the chemo you are having now, but I'm sure it won't be long before someone comes along with an answer. 

Take care and fingers crossed, 

Mandy. Xx

I havent been on Caelyx so I am sorry I cant help you.  Some have said the markers go up and then down again if I remember correctly.   Hopefully some one will answer your query.  You have just started it so the next day you go for bloods, they will do a ca 125 test to monitor it so you wont know until that is back.  I imagine you need a few treatments to get an overall picture.  I am sorry you got such a short break and fingers crossed that this will do the trick for you

marold52 profile image
marold52

I only had 12 weeks after 2nd line of carboplatin free. I started calelyx 3rd line on 1/2/16 up to now I have had 3 treatments, I'm finding it far easier than carboplatin, it does make your body hot, and I've had a very bad it hie rash, which has been treated with steroid tablets and cream WORKED.  My ca15  went down from 185 to 20 after 2 treatments, hope this helps. Just lack sleep because of steroids, but still got my hair, if you want to know anymore please ask. Love Marg 

Deesales profile image
Deesales

Glad you joined the site. One of the things about this horrible disease it's the not knowing ,waiting,and unanswered questions...... At least we can all understand that and support each other. As unless you have experienced those feelings others find it hard to understand. Find what works for you in the mean time to keep distracted . I sew , buy material , go out when I can. Etc 

Dee 

maz54 profile image
maz54

Hi Lesley and firstly welcome - obviously we're all in a club no one wants to join but here is a great virtual place to speak with other ladies! I was diagnosed 3b 2 years ago and finished caelyx as 2nd line in January. It's a slow acting chemo that works on the DNA of the cells; my ca125 was over 400 when I started and had actually risen to over 600 after 2 cycles but my oncologist said this can happen. After 3 cycles it had come down to 150 so take heart - it won't start working overnight. My ca125 is now hovering in the 50s and I'll have another scan before my next review mid July. 

I'm sorry you're feeling so crap but rest assured all the ladies here have been there too and fully understand how awful it can be living with this beast! !

Sending you a hug and best wishes for your treatment xx 

Lesley1961 profile image
Lesley1961

Thanks for all the replies so far xx I'm just finding it really difficult to be positive atm :( 

tracylawrence profile image
tracylawrence in reply to Lesley1961

Hi I have had carbo/taxol first time and after six months it returned and I am now half way through caelyx/carbo... My tumour markers are in the thousands and have always been high but as I know from my Oncologist this is not an indication of how big the cancer is ..just that it is there, so I do not get as hung up about the CA125 as others seem to. I can tell you though that after two treatments mine came down by over a thousand and although this chemo is ranked as a 'slow burner' this is a good result. I have had barely any rashes so far but I find the fatigue with this one quite hard to handle. It is sooo hard to be positive I know..it is best to go with the bad days and try and start anew the next day. I have reiki which helps get my headspace in order..may work for you. I think also when we can get out and about it helps us to 'put it in a box'  but that can be hard when you are so tired I know. I intend being around for many moons to come and each day they are finding new ways to combat this awful disease..and are concentrating a lot more on Ovarian now . If you ever feel down..please come on here to get some support. Much love Tracy

thehusband profile image
thehusband

Hi, Caelyx tends to kick in after the 3rd/4th infusion. But like everything there isn't a one size fits all.  Hopefully you will be one of the people that it starts working for straight away, but if not and if  I were you I wouldn't 'give up on Caelyx working' until further down the line. Best of luck.

Travy profile image
Travy

Hi Lesley 1961, just like you I had carbo taxol which initially cleared up all the cancer cells, but my cancer returned after three months. I started my second line, carbo caelyx in February and have just had my fourth infusion.  I don't find it too bad to tolerate - certainly don't get the joint pain I had with carbotaxol.    The caelyx didn't seem to have any effect at first but I have noticed a difference since my third and fourth infusions.  My CA125 is down to 15 and my mid-term scan showed everything is stable.  I'm hoping that after the sixth infusion the scan result will be even better.  It is a slow-acting chemo but I think it's worth persevering with.  Good luck.

Hi Lesley as I believe Caelyx is slow working, levels go up before they go down but your oncologist will take regular blood tests and keep an eye on how things are going. Wishing you all the best for your treatment xx

Btte profile image
Btte

Hi Lesley I had carbo/caelyx as 3rd round, I did find it tough they reduced my dose for the last 3 cycles. I finished last April and it has given me the longest remission. Due for a scan June 2nd.Love Bridie xx

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