My Ovacome
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Here we go again

Hi All,Scan results last week.Not what we wanted to hear.Cancer in back,not in my bowel but on it in lots of places.I asked if there is a plan (I like a plan!).

Carboplatin and Caelyx combo to begin a week Friday.My new consultant has said it won t cure this but the aim is remission and buy me time.We re all devastated.Surgery apparently isn t an option at the moment.A MRSA swab had been arranged for Tuesday before the Picc can be fitted.

I m quite uncomfortable at the moment,bloating,bruised belly feeling.

If anyone out there can offer advice on Caelyx chemo,I would be most appreciative.Nerves are kicking in already.

Sharon (57 from Cardiff)

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Hi Sharon, I am so sorry to hear its back. I have just finished 5 sessions of Caelyx. I am also in your age group. Caelyx side effects are mouth ulcers,upset stomach, hot hands & feet & head aches.

Strangely I have found this one the easiest to cope with but everyone is different. Ask for mouth wash it does help. If you get itchy spots then that can be another side effect I suffer with them. Try & stay as cool as you can maybe a electric fan by your bed. I have found milk lolly & Anbesol a God send. Drink plenty & rest lots it does help. Take care please keep us up dated. Cindyxx

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Hi Cindy,Thankyou for you honest reply.I will keep you updated.I just need to get on with it.Sometimes the fear of doing something is greater than actually doing it!

Only finished Paclitaxol/Carboplatin in April 2016,the thought of doing again makes me feel quite sick.

Have you one more Caelyx to go or are you done now? I ve been told six cycles,four weeks apart.

Wishing you the very best.

Sharon xxx

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Hi Sharon, I was offered 6 session of Caelyx but got my ca 125 down to 10 so I was only given one more.

The fact it every 4 weeks does help & gives you an extra weeks rest.

I want to wish you all the very best take care Cindyxx

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Hi Cindy,Thankyou for your reply.My CA125 had gone from 15 to 48 and now to 104 in just two weeks.I m hoping the Caelyx/Carbo will do its stuff.Will keep you posted.Best wishes to you. Sharon xx

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Oh Sharon, I am so sorry you have a recurrence & although I cannot offer any advice I hope things go well for you.

Take care, Love Caledaxxx

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Thankyou for your kind words I shall keep you posted.

Sharon xx

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HI Sharon, So sorry you need to have more chemo, Like Cindy I'm just about to finish 6 treatments of Caelyx and Carbo this for me has been the easiest one so far, I have dry skin just keep up the moistening, very dry hands, I do get tired but this comes with all chemo's be kind to your self and rest.

I have a little part time job I love it keeps me grounded I've managed to go the whole time,

Caelyx is like all chemo it works for some and not others I've been lucky it's been the most successful one for me. It's my 5th line in 3 years.

I had it 3rd line as a single agent and the side effects were bad , so this Carbo/Caelyx together has been a lot easier, the Caelyx is a lower dose and combined with Carbplatin seem to go well.

I now only have one more to go of Carbo /Caelyx my 125 went to 1300 and in 4 treatment it now is 106 and with quite a improvement in my scans. I have two more bloods results to see before finishing.

When this finishes I will be going on a low dose of Calyx as a maintenance treatment,

As your oncologist said Caelyx will not cure it but I hope it will give you a very very long remission.

Keep us up to date Lorraine💙💙

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Hi Lorraine , Thankyou for your advice.I feel more positive now.Hearing from someone who has walked the same/similar path helps and comforts so much. XX

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I had carbo /Caylex for my first reoccurrence and had 6 cycles and was NED for 12 months Currently just on Caylex for 2nd reoccurrence and am stable after 6 cycles due for my next dose in a couple of weeks Have found it quite doable use plenty of moisturiser and make sure you keep your bowels moving I have days when I am very tired but have still managed a reasonable normal life and am still linedancing when I can I find it a lot easier as you only have it every 4weeks Good luck 😉

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Thanks Cathy,I t is good to hear from someone who has been there.Good luck for your 6th,pleased you re going so well. Will keep on touch.Thanks again. Sharon

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Hi Sharon,

I'm sorry to hear this. A few of us seem to be in the same situation, including me. I finished chemo in Sept 2016 and recurrence was confirmed in August. I'm just waiting on starting chemo as my kids (8 and 5) go back to school next week.

Thinking of you,

Vicki

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Oh Vicki,you are so young! My grandchildren are that age.Wishing you the very best of luck and good health with it!

Please keep in touch,it is good to share with someone who is walking the same walk!

Look after yourself.

Sharonxxx

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Hi Sharon, sorry to hear your news. I have no useful advice as I haven't had a recurrence yet. I do wish you all the very best though. Zena J x

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Thankyou Zena J,I ll take best wishes any time!

Take care.Sharon x

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Hi Sharon--reading all of the above and have not had that combo but giving you more best wishes. I do agree that sometimes the thought of what is coming is worse than what comes! I have fingers and toes crossed this is true for you. ox

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Hi Sharon sorry to hear you have a reaccuranxr I have no advice sorry but I am in the same boat as you starting cisplatin/caeylex 18/9! Good luck I hope it's kind to you xx

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Good luck to you too Alison,we must keep in touch and share tips.

Sharon x

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Yeah will do 👍🏻

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Sending lots of sympathy and am in the same boat -my scan results last week were just awful. I have been recommended to try for the nintedaneb trial or to go on caelyx.

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I m so sorry,it just seems so unfair.Did everything last time to the letter.I haven t heard of nintedaneb,is a new trial?

Sharon

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Hi Sharon. I have just finished carbo caelyx for first recurrence. And yes, I found recurrence absolutely devastating. They said the aim of the chemo was to control the cancer, for me there was no possibility of remission. The treatment was very succesful - drop in CA 125, tumour size greatly reduced. Side effects mainly fatigue and very low wbc counts with a few infections. I did find rhe fatigue debilitating after the 4th dose but everyone is different of course. I deflinately felt it was a treatment worth doing and I am glad I stuck with it. Wishing you well with your decision and with your treatment x

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Hi Elizabeth, Thankyou for your honest,reassuring reply. Good luck to you with your own battle too.Best wishes.Sharon X

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Chickysha, ask about stomach wash chemo . It's supposed to work really well. You still get IV chemo but along with you get stomach wash. It's also called Intreparatineal? Chemotherapy. (IP). Not all Drs hospitals do it. But it's supposed to add 18-3 yrs on to life keep reoccurrence rates down. Best wishes

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Hi Liz, meeting with consultant again next Tuesday.Will add this to my list.Thankyou so much. Sharon. XX

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