I saw my consultant yesterday - she tells me that the scan shows that my tumours are still stable, although my CA125 has gone up to 237. I’m to complete my Avastin (only two to go), have another scan in January to see how things are and then tackle any progression then. Depending upon the scan and CA125 results, I’m considering having a break from any medication to allow my body to shake off the chemicals ready for the next lot. Has anyone else done this?
Anyway, I’m happy to be stable for the moment, although like everyone here, I wish it would just go away!
Hope you are all as well as you can be, love Ali x
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Sounds good! I had a five month break after Avastin before progression. And I was still asymptomatic when I started 2nd line. All the best and make the most of any time away from hospital! x
Oh that's good news. You have done well to complete the avastin treatment, seems it has worked for you
I am at same point more or less with you, on different regime. My CA 125 has come down to 234 ( from over 5000, 3 months ago). 3 more weekLy taxol to go, feeling a lot stronger, more energy etc at the moment I finish 20th December, then scan early January to see the picture as it were, then hoping for a few weeks if not months 🤞🏻of remission and time out to let the chemo poison out of my body and neuropathy stabilisation
Even started looking for a break to one of the Canary Islands late January, early Feb for a bit of a sun break....
Hi Janet, thanks for your response. I just feel that my body could do with time off (shame I can’t add ‘for good behaviour’!). There has to be a balance between the constant onslaught of chemicals and allowing your body and mind to recover.
I went to Lanzarote and loved the history and eccentric architecture. We stayed close to where Omar Sharif had his house (which I believe he won playing bridge) which is well worth a visit. On the north east of the island is another very interesting house with grounds which boasts an underground concert hall. I have no experience of any of the other islands, although my friends went to one of the smaller islands - La Gomera - for a walking holiday - it depends what you want.
Enjoy it wherever you go and my best wishes to you, Ali x
Would recommend Lanzerote, Playa Blanca as near to the marina you can get,or Tenerife,Playa de Las Americas near the Safari centre, my favourites,booking to go to one in April.....enjoy xxx
Hi Lily-Anne, yes I agree and not just body cells, but the mind too. I know the knowledge of having the disease will never go away, but without constant hospital visits, maybe it can be moved a few spaces back from the front of the mind!
You must be pleased. Stable is good, you can stay stable for a long time. I had five months off over this summer. I was monitored every month with CA-125 and exam because of how rapidly I’d first recurred (within three months from 35 to 1290 ). My trial brought the CA-125 down to 88. The CA-125 increased slowly every month when a scan was ordered at 400’s. No suitable trials so reluctantly started weekly Taxol. I hope you get the chance to have a break. Aches and pains lessen, tiredness abates, fog in the brain begins to lift and all seems right with the world.
Hi there, yes I am pleased, although being me, I will always be looking for a reason as to why my CA125 continues to rise. If it is agreed that I can take a break - and I know it is up to me, I shall cram in as much travel as I can. Skiing in March is already booked so I’m not missing that! Fortunately my consultant skis with her young family and is very understanding about how much it means to me!
I’m hoping too that the extra stiffness when I ride and knit will subside a bit - it’s not made me stop, no way, but at least I may be able to get out of bed in the morning without a hot pad and a husband to ease the pain!
Hmm, I didn't enjoy Taxol - is it easier weekly?
Hope it’s not too bad and that it’s doing it’s job for you. Best wishes, Ali x
I'm sure you'll have a great time planning those holidays. So far, the weekly Taxol seems easier, I'm thinking that Carbo may exacerbate some of the effects or maybe having it weekly is less of a shock. I'm still riding also but lately only go out for a gentle hack. Hands and feet are a bit of problem for something too adventurous. Has the added advantage that my new Fitbit interprets my gentle hack as me walking so I end up with thousands of more steps than I've really done (it isn't fooled when I trot).
Ski-ing sounds fantastic. I'm too old for downhill now but am trying to plan a x-country trip. I know there's no way I'll be able to put a lot of effort in, even walking uphill isn't as easy as it should be, but I'll enjoy the mountain atmosphere & scenery. Might manage snow-shoeing too, never tried that. The holiday I had booked in Norway had to be cancelled for when I was first diagnosed and then last year folks talked me out of it. That I was silly to even thinking about going, blah blah blah. I'm not telling anyone. Husband says that if I want to go, we'll go. Much better than when I arranged to get the bees, "if you want bees, you're on your own!"
I've read in one of your replies that you might visit NZ. I've never been but my sister lives in NSW. Agree with Lorraine71, the Blue Mountains are amazing and not to be missed.
Thanks Lorraine - if I have a long enough remission, I may be heading in your direction - New Zealand has always been a goal, but it would be ridiculous not to visit Australia too whilst in the vicinity!
Hi Ali, Australia is a must especially Sydney and the blue mountains, maybe I'm a little bit bias. I hope you do get the opportunity to have a lovely break, I might see you down under in the mountains..Lorraine xx
Thank you. Hope you all is well with you - your history is so uplifting (although for you it has been a real challenge). We do all think we’ve ‘had it’ on diagnosis, but stories like yours give everyone hope.
Hi Gwen, thank you! I’ve just looked back at your posts - I think I must have missed the one about definitions of nodules etc - it made me laugh! However, it was also very useful - I’ve just read through my scan reports and have all of those things. Apparently I also have something troubling my Pouch of Douglas too - I though that was on the Isle of Man!
Just had penultimate Avastin, the festive season awaits then holidays here we come!!
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