Having marched in to the consulting room to suggest I should delay the start of my chemo for 3 weeks so I can have a holiday, I was hit by the news that the scan shows disease progression, some ascites and a lung nodule that wasn’t there before. The registrar also explained that a blockage can be caused by a clot growing or bursting inside a tumour - mine being adnexal and pretty much joined to my sigmoid colon - not just by disease progression increasing the size of the tumour. I chucked loads of questions about delaying chemo then went for a walk with the bloke to talk it over and, as I’ve had worsening unexplained abdominal pain have decided to start Carbo/caelyx next week.
Not really what I wanted, but I’m content with my decision. I’ll still go on holiday but may have to douse my family in hand sanitiser and wear a protective forensic suit to ward off infection! I’m going to order a cool gel mat (from Pets at Home!) to keep me cool after caelyx. It may work!
Stay well all and thanks again for your part in my decision making.
Love to you all xx
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Alifit
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It’s all crap if you think of it too much, but, get your head in a good place and make the memories we all try to make.
Go on your holiday with your family and try not to worry about what is going on as it won’t make anything any better.
I am an advocate of the Ostritch, head in the sand mode ( me and LA ) until you are forced to make decisions, so, enjoy everything you do and pretend it’s not happening until you get back,then, those big girl pants will be firmly on. You will then have a clear head and more fabulous times to remember,
Thanks Carole - it is a monster, but I’m still up for the fight (I may not be so sure come next week!). The family will take my mind off it all in lovely Cornwall as long as the side effects have worn off, then I’ll batten down the hatches for the long haul (do I always write in cliches?!)
Pants on and off we go - well its not until Tuesday so I’ve a date with my friends and some pedalo swans in the park on Monday! I’ll post a picture if I can! #oldladiesbehavingbadly!
Oh Ali. I am so sad to read your post. Why can't life be easy and full of good news instead of the that crap we have chucked at us all the time. Had some of my own crap today but it's not about me at the moment.
I'm pleased you are starting treatment straight away and I'll keep everything crossed that the carbo/caelyx combo sorts you (and me) out. Three down, two to go here. I have ice bands put on wrists and ankles during the infusion. I was told it helps the hands and feet not get the peel and crack syndrome. It's worked so far even though my palms have a very tiny bit of flaky skin but I'm keeping it at bay with special soap and cow cream. I know you won't get the ice bands in UK but you may be able to make your own with ice cubes in a plastic bag and old socks. Doesn't sound very Blue Peter and I'm sure you could be more creative than I am. It's not pleasant wearing them for an hour and I'm sure my blood actually freezes in the old veins but I don't complain. I get a shot of Neulasta in the tummy a couple of days after chemo and that stops the white cells depleting - worth asking - but there's nothing I can do about the red cell die off. Just try not to cut yourself etc.
I'm sure you can do this. The side effects are different for everyone of course but I now have my Emend extended by 2 days and I don't get sick anymore but I do feel as if I have a hangover from hell. Rotten headache and just want to stay under the duvet for a couple of days. Apart from that I can cope very well. I just wish it was working a bit better than my CA125 suggests but I get my PET on Tuesday and results on Wednesday so I'll not press the panic button just yet.
So, enjoy your holiday my stability sister - we'll get to that status again real soon so don't worry. We've achieved it once and we'll achieve it again. Or else there'll be questions asked upstairs. Much love to you my lovely. xxxxxxxxx
Thanks Kryssy - I think about our stability togetherness a lot! My friend has a dog, Bob, who has just had an operation. She bought him a gel cool mat from a local shop’s pet department and I thought maybe it would work for me to sit, stay and maybe sleep on too. I might give it a go! I already have an Emend to take on the first morning and I’m also going to ask for a shed load of Movicol and some Loperamide to counteract it when my body changes tack unexpectedly!
I’ve looked at a number of creams and have ordered some medicated body powder which is supposed to be good for excema type rashes. Yes it does contain talc which has a slightly bad reputation, but it may well be too late for me!
I hope your other problems are resolvable and don’t cause you too much stress - it’s the last thing you need.
But it sounds like you've made the right decision, to prioritize start of treatment.
Can sympathize with your holiday wish though, and the thought of you traveling in a full body condome (which made me chuckle).
Just went for a weekend event myself, on day 4 and 5 after the 5th chemo dose. Am nappy'ed up and had to stop at every single service station along the 2.5 hr drive, plus am bringing a boot full of meds (luckily not crossing any borders) . Am prepared to extend hotel stay if needed and will inquire about toilet siruation onsite tomorrow.
Who knows, your holiday could be more hassle than fun, but just see how you feel on the day, and decide then? If you feel good, just go for it. Hugs, Maus (steroids for burning the midnight oil, yay).
Yup Maus, it was a wrestle, but I know things aren’t right so I might as well crack on. I can always come home - it’s not far and there are plenty of toilets on the M5! I also now have an excuse to avoid nappies (the children’s) and snotty noses - this weekend I was the lucky recipient of snot mixed with hummus! Mmmm nice!!
Thank you - I’m hoping I can muster enough ‘sass’ to do just as you suggest!
I try not to be angry all the time and although I have said ‘why me?’, I have to counteract it with ‘why not me?’. However I will not stop fighting and will continue to live the life I was going to have before this s*** as best as I can!
Hi Alifit. B.B.B.B.B! and ABC is aweful bloody cancer! But so happy u r going on yr hols. Good for you. Hope u have a wonderful time and deal with the BC when you return! I am what I call my winter retreat in Oz on my 1st recurrence and collapsed immune system after 2 chemo's. I have only been able to do 4 chemo's out of 6 so far, If I venture out, handgel and a mask are the order of the day. I keep saying, we clearly don't live in Japan cos the looks I get are priceless. I have to wave at the kids so they don't get scared! Hilarious. Have a great holiday and hope all goes well on your return. Hugs from Australia
I am on same as frontline. Carboplatinum and taxol. CA125 going down quite quickly again so that's good. New oncologist wanted me on carbo/calaex (also known as doxil) but I got terrified of skin and other side effects which I read about on this site, so she agreed I could repeat Carbo/Taxol.
Some women are really ok on Caelyx and say its a much easier regime than carbo taxol. Also good as only once a month. Please look after your skin with special moisterizer. If you need more details, let me know, as there is alot of information on the the Ovarian string of the Inspire site in USA. Hugs from Oz.
You gave it your best shot to try and delay the chemo but it wasn't to be. Hope your side-effects are few and you can still enjoy the holiday even if you must stay out of the sun.
How lovely - I would really like to go to Aldeburgh - one day! My CA125 started to rise about 8 month after first line finished. It’s nearly a year and I’ve been on watch and wait all that time - I’m a bit annoyed that is is back with a vengeance, but glad that I made the most of feeling well!
Hi , sorry it wasn’t the answer you wanted to hear . I am on my first recurrence and had my second infusion of Carbo/ Caelyx yesterday . Side effects from first time were manageable , red face day 2 , rabbit poo days 3and 4 .skin problems for most of the next three weeks , rashes and lumps in hair and in legs, arms and back . So cool showers , non perfumed products and e45 cream and aveeno for itching and maintenance . I took plenty of the anti sickness this time as opposed to last because I read that Caelyx made you feeler more nauseous, I have no idea whether I needed them or they worked , I felt fine .This morning I woke to the red face again . Get the infusion done this week and then do what we all have to , put that smile on and carry on regardless. Will be thinking of you xxJulia xx
Hi Maus--just to let you know I didn't find that regimen too hard. Really the best part to me was the breaks in between when life went back to "normal". Friday was the Carbo/Caelyx infusion, Sunday and Monday not the best, but after that, I just felt better and better and by Tuesday or Wednesday, my old self with a good 3.5 weeks till I went through it again. My blood work did not take the same beating at Carbo/Taxol and I did not lose my hair. (minimal thinning only I saw). And it worked for me. Went in a PARP after (and now in month 3). Wishing you TONs of luck and hoping you don't need it! oxox
Oh thank you - that sounds encouraging.. I know we are all different, but I’m happy to hear a positive account. I have been told that if I have a good response that I may be able to have a PARP too. There is also a new trial coming up called ICON9 for which I may be eligible. First things first though!
Hmm, I’m having both so am a little apprehensive. However, as you say, after a good talking to, I’m ready for the onslaught and know I’ve made the right decision!
I hope you’ve started packing!! Just catching up with things on here and was sorry to read your post. Your attitude is fantastic. Slip into that body condom, slide onto that cool mat and go have a jolly lovely time with your family. It might just do the soul and spirit some good xx
Thanks lovely - I’m getting organised today for both my chemo and my holiday - I just have to remember which bag to take where! First trip today though is a ride on the Pedalo Swans on the lake in the local park with my friends #geriatricsbehavingbadly!
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