Well, I would have been a rich woman if I had put a large bet on my cancer being on the march again. Had my PET scan and CA125 test on Monday and looked online later to see that the CA had risen quite a bit. Saw the oncologist today for the PET results and he was sad to say that the tumours have grown - BUT, still nothing in liver, lungs, kidneys etc. Only 4 months since chemo finished (carbo/avastin weekly) and been on avastin since, every 3 weeks. The avastin hasn't done a flipping thing, probably since day one, except cost the french health service a whole heap of money. So, starting with the chemo again tomorrow. Carbo and Caelyx this time once a month. No taxol etc for me as it almost killed me last year and now my neuropathy has virtually all disappeared I'm not keen to be paralysed again in a hurry. Fingers crossed my hair stays as about 1% can lose it. It's only just started to grow - with a curl or two as well, which I'm really happy about.
Hubby and I did all our crying on Monday after the CA result and then got totally rat-arsed. It did us good as we could put everything into perspective and I was very calm today with the oncologist. I just knew it was growing as I've two new lymph nodes up, one by my breast and one in my groin but oncie said that the one in my groin isn't a cancer. Something else entirely going on down there probably. We are allowed to have other things wrong with us after all.
He was quite optimistic that he will get me stable again and I believe him. I guess because I feel so well that I'm coping with it but with our trip back to UK looming next week I just hope I don't get many bad side effects from the Caelyx. I was fine on the carbo. Shame about the avastin but for some it doesn't work. I'm just a bit unlucky.
So that's my news. Sorry it cannot be anything cheerful but then that's life innit? Big love to you all - as always.
Kryssy xxxx
Oh, almost forgot. We did get some good news today. Hubby had his 3 monthly cancer check this morning and is all clear. He is three years down the line from skin cancer so at least one of us is ok to do the housework.......
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Kryssy
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Oh Kryssy that’s a blow...it’s weird but I know what you mean about getting that feeling that all is not well. Not everything works for everyone...cancer seems to have its individual patterns. Hopefully your next treatment will be the one that does it for you! Fighting knickers at the ready! xx
Aww my lovely ☹️ ❤️❤️❤️ That’s sad! As u know my special person was on Carbo/Caelyx she had a fantastic time on it, like it was her best friend 😊 kick the shit out of it and get back to being your usual happy funny self xxxx
Sorry to read that- expected or not , recurrence is never going to be easy emotionally or physically - hopefully the new regime isn’t too arduous and you get to keep your new curls x
Kryssy sorry to hear the beast is on the move again and hoping that your new treatment plan gets you back to stable.
I am hoping with this reoccurrence I can get NED again if not at least stable.
Hugs Ellsey xx
Hi Kryssy,
I totally get you on the knowing front too, we do get to know our own bodies so we’ll!
I’m sorry Avastin hasn’t worked out for you but pleased they have a new regimen lined up. I also get the hair thing, it’s made such a difference to me not losing it this time. I didn’t really mind the physical thing it’s that everyone knows you are a poorly kid!
Anyhow, you had the right approach to the news, getting rat-arsed!
Thank you Lisa. Because I now have some hair no-one looks at me like the poor chemo victim, which is lovely. In fact, a friend said she'd pay good money for a haircut like mine. I told her that she could get it free at the chemo clinic. Here's hoping I'm not a one percenter. You take care lovely xxxxx
Oh bummer, Kryssy 😔 As much as you might have expected it or known it was coming, it still stings when it happens. Lots of us seem to do well on Carbo/caelyx, so fingers crossed it does the job for you too.
Hi Vicki. I've heard that the combo is ok so I'm rather looking forward to trying it. It's just the hours in chemo again. Got my knitting, MP3, Kindle and toys packed for tomorrow. Time to hit the hay as up at 6am for the taxi at 7.15. Thankfully only once a month though. Love and hugs to you xxxx
Thank you sweetie. It happens and I was prepared for it to be honest. It doesn't mean I'm going to pop off tomorrow - or the next day come to that. I wish I had gone a bit longer being stable as I know the odds but at least I'm starting chemo tomorrow. Onc asked if I wanted to wait until I returned from UK. No way mister. Hit the bugger now. I'm a little anxious over the size of dosage he's shoving in me. He felt that the weekly wasn't strong enough to do the job. At least now it's monthly I'll get time to recover properly each time. I'll be masked up on the plane next Friday for sure as I think Caelyx lowers the white cells. Not too sure to be honest. I just hope I don't react as bad as I did with the taxol. I don't want to miss our trip and I certainly don't want to miss our get together. We are free from the 15th to 18th at the moment, inclusive, but the dates are filling fast. How do you fancy the 15th? Do you think you would be up to it? We can PM places and times etc.
Now I must go to bed as I need to be up bright and early. Big love to you. You can squeeze me as hard as you like. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi Kryssy. Really sorry to read that the beast is on the move again. Sending you all the very best for chemo tomorrow and my fingers are crossed for your trip back to Blighty. Love Jo 🌼🌺🌹🌻🌸
Hi Kryssy,sorry to hear your news.I m having my 8th round of Carbo/Caelyx tomorrow.Tumours have shrunk by more than 50%.Hence 8 rounds instead of 6.Haven t lost my hair this time.Skin has taken a bashing though.Lots of moisturising.Take care and be kind to yourself. XX
So sorry to read your news, Kryssy. What a bu##er!! Hope the Chemo doesn't make you feel too bad so you'll be able to enjoy your trip back to England. Love it that you still have your sense of humour re housework. Keep smiling. Sending a big hug and some flowers. 🌸 🌺 🌸 🌺 🌸 🌺 🌸
Hi Kryssy, Sorry to read that it's started againe I just would like to wish you all the best with Carbo/caelyx I've had quite a bit of Caelyx as a single treatment and Carbo/ C aelyx with good results the single Caelyx was harder then Carbo /Caelyx, my oncoligst did lower the Caelyx dose with the Carbo but only by 10%. I kept my hair both times.
I've been off chemo and my history is as soon as I go off chemo it's only a short break and my 125 goes up it's now up to 346 so to day I going in to have Caebo/Caelyx again, as this has proven to be the most successful chemo for me, as we know we are all so different when it comes to treatment I hope it gives you good results.
Thank you so much Lorraine. Not much sleep for me and time to get up now. I'm fearful of a repeat of last year when the taxol and taxotere almost killed me but I take comfort that lots of the girls have been ok on caelyx. Keeping my hair would really please me. I'm getting used to the cropped look. So ready to fight again. Please take good care of yourself. Lots of love Kryssy xxx
Sorry to read the tumours have grown, but I take heart at this sentence, "He was quite optimistic that he will get me stable again and I believe him.".
And give you husband a squeeze from all of us. Well done on his cancer check.
Hi Kryssy, I have recently found out I have a recurrence. I had a laparoscopy but they were unable to do any debulking. I also start on carbo/caelyx next week. Lets hope its a kind regime. Good luck
Even though you “knew” I guess you had a tiny hope you were wrong. Still if the Avastin did nothing, the carbo must have done all the work since you couldn’t have Taxol. So with the addition of Caelyx you should get to stable again soon.
Sorry to hear your news. Avastin did bugger all for me too.
I’ve a friend who had taxol and carbo first line but for second line she had carbo and caelyx monthly and did really well on it. Not many side effects and it did a good job on her tumours.
Good news re: your husband. It’ll be a trend. You’ll be getting good news too. Stay the positive lovely lady you are.
So sorry to hear it's back, but you do tackle it with spirit, Kryssy, and you seem to have an oncologist who inspires a bit of confidence. Best of luck for he treatment and your trip to UK. x
So sorry to hear this Kryssy. Don't blame you for getting rat arsed - that would be my first thought. Sounds like the oncologist has a plan..I'll keep everything crossed that it gets rid of the bugger and then keeps it away! Sending hugs xxx
Hi Kryssy. So sorry to hear you are on chemo so soon. I don't think Avastin really did anything for me either but so far Carbo/Caelyx has to be my 'favourite' AND most effective chemo combination! I had minimum side effects and thd fact it was four weekly rather than three meant I could squeeze in lots more exciting adventures. Fingers crossed it is the same for you. Sending hugs. X
Sorry to hear that it's back again. For my mother too, she had 10 cycles of Avastin and now the scan shows growth. Although CA-125 has rose from 18 to 28 in 2 months only. Oncologists are contemplating a second cytoreductive surgery or chemo. Before going for surgery there has to be a break of 4 weeks after last Avastin dose.
Kryssy Avastin was a chocolate fire guard for me too. Horses for courses. There are other ways and means. You have a good grip on what matters and I really hope your new regime works out. Take care xxx Netti
Sorry to hear you have to go through chemo again but i so get it that if you don't loose your hair people dont know you are on chemo and you can just get on with it. Keeping fingers crossed for you to get through without any problems. From the posts it seems to be a good combo.Stay positive. 🌷🌷🌷🌷
I love your attitude towards it all , humour helps a lot...well does me! If ya dont laugh u cry eh. Wow what a shame for you to go through all that, funny how we know eh. Wish u a speedy recovery and awesome news about ya house boy lol xx
Hi Kryssy sorry to hear your news. The same has happened to me. I finished avastin in January, had my ct scan to be told the tumours had increased in size so i went straight on to carbo/caelex. I had a ct scan after my third chemo and yesterday i was told that no cancer was showing and my CA125 is now 140 from 990 at the start. This was after 2 chemos. Had my 4th chemo yesterday - 2 to go. We still cant take it in so fingers crossed it will work for you. The side effects have been bearable. Nausea continued, hair thinning slowly but the fatigue is crippling. Take care
Hi Kryssy-my second line was carbo/caelyx and I found it easier than carbo/taxol mostly because it was every four weeks---most of that time was feeling so darn normal. My hair--which had just filled in from Frontline stayed pretty much the same throughout--some thinning which only I could tell--maybe 15%--with your cute short do, I don't think anyone would notice if that happens although for many women, no hair loss at all. Less time in the chair, I had a lower dose of antihistamines (I got totally "drunk" with that on carbo/taxol but not with this--nurses confirmed its a lower dose) which I preferred. And it worked well for me and my fingers, toes, and everything else is crossed it will for you too (I am now on a PARP inhibitor--is that possible for you "after"?)
Happy about hubby's news and yes! We need someone to be able to clean the house, etc!
So pleased you had good results with C/C - as did a lot of the other girls. Gives me a right old lift of spirits. When this chemo is done I'm being tested for the BRAC gene - have to make an appointment - but can't remember if I have to be yes or no to get the pills that the oncologist was talking about yesterday. He did say but hubby can't remember what he said either. Great ay? Today not been so bad - funny in fact. I may write a post later relating my morning, just to keep you all smiling a little. Watch this space.... xxxx
Probably Parp inhibitors-seem to be maintenance drug du jour and now with one which works with some BRCA- women too. Is he going to test your HRD? Details later when you’ve crested this hillock. Lots of advice re caelyx on here. I walk fine with it, but watch those neuts. Good luck xx
Seems to have been a number of posts about avastin failing for a lot of women. ( I only lasted 3 additional stand alone treatments ). I wonder what percentage make it to the end? I was so hopeful of it and to hear the theory behind how it works from prof Jayson at the Ovacome conference in 2016 was brilliant.
Anyhow onwards and upwards for many of us. I just had my 4 th cisplatin treatment yesterday and back on the etoposide tablets after a two week break. My CA 125 was 4000 apparently ( now 1300) so hoping for another nose dive soon
Won't know what's going on inside me until scan end of May.... yes we do have knowledgable gut feelings about what's going on with us the further we go along the various lines of treatments.
Rock on your hubby... I've sent mine out for a walk on the hills today... in much need of.
Take care... and enjoy your trip over. Send pic of any meet ups
Hi Janet. As you know I was really upset to hear you are back on treatment so soon after ringing that bell. Still, it's nice to be in an exclusive club sometimes, even though we'd prefer not to be. There's a bit of Irish for you.
I hope your hubby knows his way back. A friend of a friend in France took up walking 5 miles a day to keep fit. No-one has seen him for months but there was a possible sighting in Barcelona !!! Old but still good
I'll post pics of gatherings - once I've airbrushed out all my wrinkles.....
Do take good care of yourself and get that CA crap down asap.
Yes, I'm fine. A bit bizarre really to be honest. Tired now, but I didn't get a lot of sleep last night, despite taking steroids when I should not have done. Oops! Teach me to read instructions...
Only ever been to Paris once, despite having lived here for 15 years. Didn't even see anything much more than a pub, the Metro and the train station. Hardly tourist attractions. Maybe go in future as all the best cancer clinics are in Paris apparently. Something to look forward to.
The best of luck with your scan tomorrow. Don't forget to post. xxxxxx
Oh Kryssy! Sending hugs - getting rat arsed was just what was needed. Maybe give the cancer cells bloody alcohol poisoning (one can only hope)! I'm glad you have some good news at least for Hubby - but wished the same for you too! xxxx
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