Trying to be positive : Mucinous tumor hi i was... - My Ovacome

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Trying to be positive

izzybruce profile image
19 Replies

Mucinous tumor hi i was diagnosed 1c 2 i had my op to remove everything, and i am having 6 rounds of carboplatin i havr had 1 session second this saturday at christies, i am worried with this being classed as a rare tumor of it coming back as it is hard to treat if it does,also i have booked a week away to devon after 3rd dose of chemo,in the middle week as i am having it every 3 weeks,i have felt ok after 1st one just a bit tired,but i am worried. Now that maybe i should cancel has anyone had a break midway through there treatment,any advise would be appreciated

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izzybruce
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19 Replies
Katmal-UK profile image
Katmal-UK

Hi and welcome to the forum, although sorry you are having to be here. Chemo is cumulative and I wonder if you can change your trip to the week prior to your fourth dose? I used to feel rubbish in week one after chemo, bit better week two and then the third week almost back to 'normal'. If you can't change it just be aware that you might not be able to do as much as you want (or hopefully you will surprise yourself). If you were on say session 5 or 6 I definitely have said wait until the third week. I don't think you need to cancel just be mindful that you may not be able to do as much as you want. The sunshine and getting away to a beautiful part of the country will definitely boost you (not to mention the cream teas!) Hope you have a fab time. Take Care xx Kathy xx

izzybruce profile image
izzybruce in reply toKatmal-UK

Hi thanks for your quick reply, no available dates left for this year so in 2 minds what to do, i have a cut of date 2 weeks after my 2nd dose,but i won't be going till the 2nd week after my 4th dose,its one of those,what to do for the best xx

Cropcrop profile image
Cropcrop

Hi, welcome to our gang, as Kathy has said carbo effects do tend to be a cumulative, don't cancel your trip I think the break will be good for you but be aware you won't be on top form.

You are in really really good hands at the Christie, I had my treatment there, they are only too happy to answer any questions you have but I would say to concentrate on the now and have your treatments before planning for recurrences.

I hope your chemo isn't too hard for you and you can be as well as possible during it, as whatever you want here. Take care ❤️Xx Jane

Sunfleury-UK profile image
Sunfleury-UK

HI Izzi,

Its good that your first round of chemo has gone ok- it does affect people differently some manage to work throughout and others are hit much harder. I found the week before the next dose was my best so arranged things for then but I know others who had two good weeks. Hopefully this will be the case for you. I should give you a heads up that sometimes toward the latter doses, chemo may be deferred for a week if blood results are low. It doesn't happen to everyone but isn't unusual... If you are feeling anxious, is there anyway to make looser plans, for long weekends maybe or decide to make a 'last minute booking'? I think chemo can be tough enough on its own without additional stresses but completely understand wanting to look forward to getting away... we waited until the end and then had the most fantastic break in Islay. Whats most important is to do it your way..

I was Dx similarly 1C mucinous in 2012 (i have been NED since) and also treated at the Christie. There is good reason to be optimistic with this type and stage with a good surgical result.

Very best wishes, Sx

izzybruce profile image
izzybruce in reply toSunfleury-UK

Oh thats good to know someone with the same type im glad you have had a positive outcome, mine would have been 1a but it burst 3 days before my op x

Sunfleury-UK profile image
Sunfleury-UK in reply toizzybruce

There are a few of us on here who've had a mucinous tumour. If you do a search for 'mucinous' in the box (top right) you'll find some previous conversations.

Sx

Lyndy profile image
Lyndy

Hi Izzy you have some good replies here..I would add that you need to have a plan in case your temp goes up while you are away (day 15 was always my nemesis) I would inform your team about your holiday so that if you needed an admission while away they can be in touch with the local hospital. Sorry that sounds alarmist but better to plan than be taken by surprise. Hope you have a lovely time xx

izzybruce profile image
izzybruce in reply toLyndy

I have asked doctor he has told me to take my 24 hour helpline number,incase i need to go to a hospital,x

Lily-Anne profile image
Lily-Anne

I'm planning on going to Madrid after number three and I don't fare so well with side effects. Go and enjoy

LA xx

Purple-iris profile image
Purple-iris

Hi Izzy

Am sorry that you have had to join our club. You are in good hands at the Christie so I would take their advice re your holiday . I always stayed close to home for the first week but was then relatively well to get on with life for weeks 2 and 3 . We travelled about 3 hours to the coast of Dorset for a few breaks during chemo and the sea air and beautiful walks did me the world of good and revived me ready for the next round !

Just make sure you take any meds, thermometer and hospital notes with you and know the nearest A&E and your emergency contact number just in case . Also be careful to avoid any unnecessary germs and crowded venues as your immunity will be low and stay covered up to avoid sun burn . The sea air can burn even on a cloudy day and we have been caught out a couple of times before I was diagnosed so now to be very careful .

Good luck for your treatment , have a good break ,stay well and enjoy the sea air. Love Kim x

izzybruce profile image
izzybruce

Thanks kim,yes it will be brixham port in devon so plenty of sea air,its a consolation holiday,as had to cancel greek holiday due to what has happened, my 1st week was my tired week,but when i go away i would have had 4 chemos,and it will be week 2,thanks izzy x

Jo2305 profile image
Jo2305

Hi I have just finished 3rd line weekly taxol 3 weeks on 1 week off and in my break have had 3 nights in Spain with the girls and 8 nights with my hubby. On my second line I went to Spain for a week. Personally I would just go, you're only in England and the break will do you good, mine certainly didn't do me any harm! All the best to you x

izzybruce profile image
izzybruce in reply toJo2305

That sounds positive,glad you enjoyed all your trips x

Hey hunny I've just had round 3 of carboplatin! First one was awful had the steroid crash! But two was much better, changed mess and managed a few days in Cheddar and also in the third week , five days in Austria! ( with the full acceptance of my oncologist ) The break away did me so much good mentally! Even managed to feel a bit normal again.... I'd say go, recharge, your in the UK if anything goes amiss, just take it easy and enjoy 😊

izzybruce profile image
izzybruce in reply to

Oh so glad you have managed to get away, more positive now thanks x

Caroles1 profile image
Caroles1

I also had the same as you,NED for 3 years so far,agree withSunfluery,there's every reason to be optimistic.

I was also 3 weeks on 1 week off with chemo,Carbo/Taxol and to be honest I sailed through once they got my meds right.Yes, I did get tired,but I also looked and was very well.I used to go away on my 1 week break,but only in this country and never over did things.It really depends on how well you feel,but just pace yourself and sleep when tired,

Good luck,

Carole xx

Lizchips profile image
Lizchips

It's best not to have a break in your treatment. Tell your Dr if you're tired they can give you other meds. Blood etc. But remember when you're sick you are not going to be able to do so much. Sometimes we need to take time for ourselves. Best wishes whatever you decide.

ScardyCat40 profile image
ScardyCat40

I am also a patient at The Christie. I had carboplatin only for first line. I was fine on it the first week was usually my worst but the side effects are cumulative so you feel more and more tired with each cycle. However if I was sensible I found I could still get out and about. I was lucky that my blood counts were always normal.

izzybruce profile image
izzybruce

Yes i had my second Saturday, doctor seem to think break would do me good,it will be after my fourth and she told me she would give something for if i needed it before i went away,i do feel a bit more tired,and if it does accumulate with me hope sea air will do me good xx

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