Hi everyone,
It has been quite a few months since I have been on the forum due to treatment and surgery but I wanted to come on and give an update. I know a couple of people were following the story and didn't want it to just end when the website migrated part way through the story!!
To summarise I was diagnosed with metastasis in May 2012 after a pelvic exenteration in Jan 2011 and chemo rad in Jult/Aug 2010 for stage 2b. I was accepted onto the CIRCCa Trial and began treatment in June. It was double blind trial which meant neither myself or consultant knew or knows if I was given the trial drug however due to the side effects the drug causes it was assumed that I was on the trial drug.
I was taken off the drug about 4 weeks into the treatment as my body was too sensitive and I was rushed into hopsital a couple of times but luckily I remain on the trial as such and continue to get scans every 2 months as part of it. I received 6 cycles of Carboplatin and Taol although the dose did have to be reduced due to my neutrophils taking a hammering after the 2nd cycle. The cycles were scheduled to take place every 3 weeks but again due to UTI's caused by low blood count they were delayed on a number of occasions. I finished treatment in Oct 12 and now am just being monitored and in 'wait and see' terratory. My scans have all had good results with my most recent showing that all lymph nodes have resolved (cleared) and the cancer in my spine and shoulder bone has shown to be sclortic (healing) and on the last scan beginning of Jan the bones showed as clear. I must stress though that the bones had not been specifically looked at but on previous commentary it always showed as there but sclortic and this time it stated clear. I am obviously elated with the news as we could not hace wished for anything more based on my diagnosis. I know that I cannot be cured in the normal sense and that it will come back but my consultant has ladies on the trial who had to stop taking the drug too who are 12 months post treatment with no further growth. I have to hope that I too will be one of these ladies.
I wanted to update this as I know how scary it can be when you have a recurrence or hear news that you have mets. You scan everything for positive stories and something to cling too and in my case I found nothing. I found scared ladies posting intially when they were told and then nothing which frightened me more. You start to think all sorts of things. I don't know how much time I have or when the cancer will start to grow again but my body has faught and so far has won this battle. I hope that if anyone comes across this post and has just been rediagnosed that you can find some comfort. The treatment is tough but in my case it has done its job.
My next scan is March and I will continue to update what I hope will be good news for many many months to come.
The ladies on this forum are amazing people and many are now very good friends and I would just like to thank all those who continue to support me.
Thanks
Lou
Hi Lou,
wanted to wish you well with all your treatment....what complete inspiration you re to all of us. You have shown that its so importantnot to give up hope and to fight all the way. I have recently competed treatment for stage 2b and am awtg results. Now the focus of treatmnt has ended, my mind is working overtime and my bigest fear is that treatment has not worked and that the cancer has already spread/spreads in future. I just admire you so much for remaining so positive and defiant and I hope I have your stength for whatever is thrown at me in the future. How do you feel physically after such gruelling treatment?
Take care Lou and let us kno how you are getting on from time to time
xxx
Hi Lou
I had been wondering how you were doing and I'm so happy to read that you have had a positive reaction to your treatment. It's so reassuring to hear that these new drugs can bring hope, and it's so generous of you to come back and share with everyone.
Hoping you continue to go from strength to strength in your recovery.
Lots of love
Louise
Hi Lou
So pleased that things are going well for you and you have had some good results with your treatment
Thanks for sharing with us i am now 18 months out of treatment for my recurrence, I' am in wait and see terattory too, every 3 months. I know when first had reccurance I did trawl this site for positive outcomes. So thank you very much for posting I know it will reassure others like me
Keep fighting xxxx
Hi everyone, Just wanted to pop on and give you an update. Had my 2 monthly CT scan as part of the trial last week and went in for the results today. I was really nervous this time, not that I am not normally but I had a bleed a few weeks ago which really shook me up. As it happens after 12 months of being housebound I have gone mad and not stopped since my colostomy surgery and the day before walked 2 and half miles which in hindsight probably had a lot to do with it!!!! Anyway results in and fantastic news is that everything is stable! To say I am relieved is an understatement. So wonderful hubby and I are off to Scotland for a month at the end of this month returning home for my next scan at the beginning of May before heading off again and returning for the Manchester Walk for Fun. I hope everyone is keeping well, good luck if you are just starting treatment and hang in there if you are part way through. Positive thoughts and good luck to all. Lou x
wonderful news you must be over the moon! Have a fantastic holiday in Scotland xxxx
Brilliant news!!! :)
You really are an inspiration!
K xx
Hi all,
Hope everyone is ok and bearing up whilst waiting for results, having scans treatment and trying to move on.
I just wanted to pop on again with my latest update that had my 2 monthly scan and the results were again fantastic and I continue to be stable.!! Yippee. I found the news from my current onlogist and when walking down the corridor I saw my old one. She asked how I was and said how wonderful I looked… If feel it, honestly! I said stable and she looked suitably pleased and even rechecked the dates I finished chemo. When we left her I looked at my husband and said 2 years (this was the tentative timescale I was given 12 months ago.) I though it and my husband said it, at least 10 years to which we high fived! There is a long way to go before I reach 2 years I know that but my consultant is still seeing some woman 12 months on from chemo and still stable and I intend to be one of these ladies!
The reason I post is because ladies have told me they told answer the post but they follow them. Like I said in my first post I could not find any stories about what napped after a recurrence and certainly no positive good news stories so I hope that this / these posts help ladies realise that palliative treatment can help and who know how long we can control it. Keep well everyone and stay strong… Never give up xxx
Wow!! Great news!! Keep strong! You really are amazing!!
K xx
Great news, keep strong xxx
Hi All,
Not sure if anyone is still following this post as I know a lot of people are on facebook now but like to keep adding just so if anyone does stumble across the post they can see it has not ended and will hopefully give hope.
Had my latest 2 monthly scan result last Monday and everything remains stable! I am obviously thrilled as it's 9 months since any active treatment.
Life is good, the support group for Jo's (Manchester) is going really well and is full of fantastic suportive ladies, we are all really good friends now despite only knowing each other for a short period of time. I cannot recommend a group to you enough!
My husband has taken 6 months off so we are travelleing around Scotland in our touring caravan only coming back for scans and then disappearing again. I could only dream of this last year when after my ileostomy reversal and chemo I was housebound so we are making the most of every moment .
What a difference a year can make and even to those of us deemed incurable.
On a further postive note a couple of ladies who were also on the trial with me but whose tumours began to grow again, have started new phase 1 trials. Both as different hopsitals and on different trials. You might think that is not positive but actually they have both responded well to the trials. Its reassuring to know that trials are taking place and that positive results (however early on they are) are being seen. It give people with recurrence both options and the hope that you never know what is round the corner.
Never give up hope.
Unitl September when I hope I will be posting another good news update.
Lou x
Hi Lou,
Thank you so much for posting, and congratulations on another another good result 
I’ve only recently been aware of your treatments etc on Jo’s but it’s such a hopeful and encouraging thing to have you posting these updates.
All the very best xxx
