Well, what can I say? Saw onc on Wednesday, straight from the airport, still with suitcase. Thanks Ryanair for two cancelled flights. But I had missed my blood tests so had to go there after appointment so that I could get my carbo and caelyx yesterday. Onc agreed that the lymphs by my breast have definitely shrunk since first carbo/caelyx 4 weeks ago so although the cancer crept back after first line ended in January, he and I both thought that this second line was doing its job. Not so it seems.
My CA went from 126 to 152 from January to end of April on avastin only. Stopped that and began the carbo/caelyx straight away and just got my bloods and CA is 180. It's going the wrong way and I don't know why. Next PET scheduled for July and next chemo in 4 weeks.
I really wasn't expecting that and I've had a cry, the first for ages, perhaps because I am really tired after yesterday. Anyone have some encouraging words for me? I was originally 385 on the CA rollercoaster and although that's considered low to some, I am stage 4b.
Hey ho.
Love and hugs to all of you sisters. Kryssy xxxxxx
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There is good news Kryssy, your lymphs have shrunk, you've had tests which everyone are looking into and you're having treatment. Don't know why the CA125 is rising but when all the results come in you'll find out. You're a strong person and will pull through like you always do.
After a good nights sleep you'll feel much better. Write a strong letter to Ryanair and give them a piece of your mind. Pretend they're the cancer and give it to them. You probably won't get anywhere but it might make you feel better.
Thank you. I've had my moment and will rally round. Will concentrate on losing the 7kg that I put on whilst away. Nothing fits anymore. And I don't look so good naked these days.... xxx
I haven't looked good naked for years and I remember when I put on2 kg a week when on chemo. I'm back to my 9st 9lbs now but at my age I wonder if I look haggard. Then again it's better than the alternative.
You have as many moments as you need. We're here to drag you out of it if we can. If nothing fits get a couple of new outfits. My wardrobe has clothes from size 10 to 16. I always say it depends where you buy them because they come up different. Makes me happy anyway.
I wouldn’t worry about the CA level it’s really easy to get hung up on. I was told and experienced that when each reading doubles it confirms recurrence. A gradual climb is usually considered stable and is likely to go down too. Chemo can cause some inflammation so that can account for it too. I didn’t find my lymph node tumour affected my level in any way.
At least you made it back home I’m disappointed that I traded lunch for sepsis lol but we will have that get together. I’m hanging on for November so August should be a breeze
Thank you. I'm positive again thanks to you and Zena. Going to sleep now as totally zonked out. Just unpacked our parcel of goodies from UK. Had to declutter the wardrobe to get the new stuff in. Luckily hubby messing in the garden and didn't see.
I'm sorry about not meeting too but August isn't far away and we'll be there on the 2nd till 21st. Best to do it early on before we start the grand tour of the west. Just hope that July 's PET scan doesn't bring more bad news.
Sending hugs and positive vibes! Not sure re Ca 125 but maybe it’s inflamation somewhere that’s raising it a bit?
The good news is your lymph nodes have definitely shrunk which is great news xx
I know it’s hard to not panic and feel gloomy when results aren’t what we expect but they’ve not stopped or changed your chemo so they must think it’s being effective against the beastie??
Like Harpist, I've read that Caelyx takes sometime to kick-in rather than show immediate drops in CA-125 levels. There doesn't appear to be an exact correlation between CA-125 levels and volume of disease so it's what the scans show that is more important.
Hi Helen. It's been a bum day all round really. Mower's clutch packed up half way through hubby cutting the knee high grass. I put universal cleaner in the washer instead of fabric softener and spent most of the afternoon de-sudsing the washing. Should have gone to specsavers whilst in UK! Can't poo today so feeling bloated. It never rains but it pours - but it didn't rain today, so a bonus. Hope you are feeling well and happy no matter what. xxxx
Totally get why you feel panicked (been there too!), and I’ll give you the advice I don’t follow, but try not to worry! It sounds like you are doing well, and your onc is happy with how you are doing. Fingers crossed the next set of bloods show a decrease 🤞
Echoing all the good advice above, especially that you are bound to be exhausted after your trip and positively furious with the airline. I know you have enjoyed a lovely holiday with your family, but even the healthiest person would be stressed after all the problems you have had.
Try to focus on the positive (I know!). With love and good vibes coming at you, Ali x
Hi there my stability sister. Was that short lived or what? But although you have been through the mill this last five months, I'm sure we would still fall into the"stable" team. Such is our life now and I shouldn't chuck my toys out of the pram just yet. All calm now and ready to get on living with cancer. Emphasis on the living.
Thank you all for getting me back on track. Again. Anyone seen my sense of humour? I must have lost it at Stansted Airport last Sunday.
Big love to everyone out there that keep me sane xxxxxxxx
Sometimes the bloods go up and come down again, I would try not to worry and wait for the next scan. Remember you were tired and stressed as well and you are allowed to get upset, nothing wrong with it at all
Hi Kryssy, Good advice from the ladies as usual as you might know I've had quite a bit of Caelyx as single and now my 2nd Carbo/Caelyx and yes it is slower to give results and my 125 did go up slightly then down, my first Carbo/ Caelyx my125 started at 1300 it took 8 treatment to bring it down to 57 that was just before I started the trial,
Glad you are feeling a bit more positive, I know it's hard when all we want is some good results your lymphs shrinkage is a good result, arfter only one treatment so now hoping the caelyx does it's job, ..Take care lots of hugs Lorraine xx
Thank you for your encouraging advice my lovely. I know you've had more than your fair share of toxic waste these last four years and you always sound so positive, which helps us all. I shall forget about the stupid numbers and just get on with the new day in my usual nutty way. Got a bit of nausea this morning and can't poo but took my colon cleansing pills at 4am so shall expect a movement any time this morning. I'll feel better then. Having a lazy weekend after chemo and will enjoy sitting in the garden - in the shade - and thinking of nothing at all. Well, that's the plan anyway.
Our sit on mower has packed up. So has my computer. The grass is knee high after our 3 weeks away and I have only my ageing kindle to communicate with. What else could possibly go wrong I wonder...... xxxxxxxx
Hi Kryssy. It's not considered a recurrence unless you also have symptoms or the scans show disease. I've lived a normal life for over two years, while my ca125 was slowly climbing. No treatment until a PET/CT scan showed actual cancerous/'active' lymph nodes.
Nerves of steel, mylady, nerves of steel. Many hugs, Maus.
Hi Kryssy. Hope you’re feeling much better after a good sleep. Excellent advice from the ladies. I’ve not experienced calyex yet so can’t help in a practical way. OC is such a physical and emotional roller coaster, it’s exhausting and that’s without Ryanair adding to your woes! I’ve just flown with them for the first time and was not impressed. The delays weren’t their fault on this occasion (air traffic control) but the plane was old, noisy and racketty, the cabin crew couldn’t really be bothered and the pilot thudded onto the runway so hard I was surprised the wheels didn’t fall off! Still, a week in Crete with my sister was fantastic. The views from the villa were breathtaking, mountains in one direction and blue blue sea in the other.
Fingers crossed for your treatment and for a good summer in deepest France. With love
Feeling much better today. Yesterday has been eradicated from my memory, I hope.
Yes, flying with Ryanair is an experience. I don't mind the thuds and sways on landing as it's all over and I'm on the ground. Terrified of flying.
Oh, a week in Crete. How wonderful. The weather here has been awful while we were away but good in UK. We are having a good day today but then wall to wall rain and storms for a long time ahead. C'est la vie.
Oh Kryssy you have given me a boost this grey Saturday morning. Your outpouring of frustration and the reactions it prompted helped you but reading it all this morning is also reassuring me and hopefully others too. There is so much love amongst us fellow sufferers and it sees us through the highs and lows, especially the lows. Thank you Kryssy and enjoy your day. Gx
One thing I have learned by being part of this special forum is that whenever I'm afraid or angry about my situation, the girls are here to listen and advise. It's not the same when loved ones tell you, "Everything will be fine". It's not the same as someone who knows how you feel because they have been there themselves. This forum is a magic place and although we are all in a pickle, I don't think I would want to be part of any other band of lovelies.
Good health and happiness is wished for us all. xxxxx
Hi Kryssy--everyone has said it all already but the first thing I was going to say is that I have heard of ca125 rising before falling on Carbo/Caelyx for many. And its not a doubling so its a good sign. I envision you on your lounger in the garden and if I could have had that during my Carbo/Caelyx days, might have made it more pleasant! I also understand that first cry after unexpected news and its like letting off some of the steam too. You bounce back quicker than most and quite impressive if you ask me.
This treatment also was more constipating for me that frontline so make sure--whether you poo or not--you take the stuff that helps you go--meaning take every day!
Thinking of you and waiting with you for your next readings.
I've done the unforgivable and had a google. Would have rather had a poo, but hey ho. I'm heartened by the fact that Dr Google says it's almost normal for numbers to increase at first so panic over. I'll not worry about it as my lymphs are my messenger and they are smaller. I only have a feel every few days otherwise it becomes obsessive so I checked this morning and they are the same. The lymph in my groin, which doc said wasn't cancerous according to the PET scan, has just about gone along with the ache it brought with it. I have slept most of today on and off and feel a bit wobbly but the fresh air has been a tonic, as well as the birdsong. All is to be disturbed now as hubby has spent all day fixing the mower and when he gets back from the pharmacy with some haemorrhoid cream (because I've got a sore botty from pushing out the rabbit poo), he's going to cut the grass and disturb my peace. He's quite upbeat about (possibly) fixing the mower so I hope he's not going to be disappointed. Fingers crossed for him and massive brownie points if he has done it.
Tomorrow he has to sort out my computer and I have to bite the bullet and ditch my beloved Windows XP. I'm one of the few remaining loyal fans in the world who have been hanging onto XP and now it's a problem to get emails and do other computery things which I don't know much about, but enjoy. I refuse to go beyond Windows 7. I've tried 10 and it confused the hell out of me. 7 I can just about cope with. Thank goodness I back up my stuff regularly but it's still going to be a worrying time. Like losing a dear old friend. Boo hoo.
Who knows, one day I may even get a phone which does more than make phone calls and send texts. I doubt it though.
Aha!! Hubby has returned. Oh dear, pharmacy was closed this afternoon for some reason or other. Bugger. Well, that's France for you. Just have to sit on a rubber ring or something for now. Nurse will be here shortly to stab my tummy with neulasta as my white cells have gone on holiday. Perhaps she will have something in her magic bag. When will it all end......?
I am sorry the trip was so stressful for you: although you truly sound an amazing woman! I hope that the side effects of Caelyx and Carbo don’t effect you too much ( it hates me sadly! I’m now about to start on something else soon) I did eat many prunes for breakfast in porridge!! Hope that helps. Where will you be receiving niriparib please? I asked about that a while back ( as I’m BRCA neg) but my onc just dismissed it completely as it was “prohibitively expensive..”!! So that didn’t help much! All the very
I'm sorry you had no joy with the carbo/caelyx. It's upsetting when the drugs don't work. I was mortified when the avastin didn't work. I'd had it from day one with the chemo and only knew it wasn't working after 3 months of avastin alone. Still, there's always something else to try. I don't know about Niraparib but the doctor said that towards the end of this lot of chemo I'm to be tested for the BRCA gene and then hopefully can go on tablets to keep me stable. I don't ask questions about the future as I tend to concentrate on the present and make the best of today and don't worry about tomorrow. I also don't want the responsibility of keeping me well so let the medical team make the decisions. So far I've been happy enough, despite bad reactions etc etc, so I'll just go with the flow of it all. When I need advice the first place I come is here. Only those who are living with oc know what's what.
One thing that does upset me is to hear that you and others are prohibited from drugs because of cost. I'm assuming you are in UK. I've voiced my opinion about that many times. I'm just grateful that I live in a country that gives patients what they need, not what the system can afford. I wish it was the same for everyone. The injection I'm getting this afternoon costs almost 1,000 euros but without it my white cells wouldn't recover enough for me to continue with the chemo. Avastin is grossly expensive and poor lasses like Lily-Anne have to crowd fund to get it. That's not right.
I haven't looked up Niraparib but I've seen it mentioned a lot here on the forum. I hope you can make some noise and get what you need to keep you well. Things have to change for girls like you - and Lily-Anne.
Sounds like shrinkage if lymphs is saying one thing and the rise in CA 125 another. But shrinkage is shrinkage , and from only one dose of carbo Caelyx that sounds encouraging. For me on that chemo there was some shrinkAge after 3 months and more after 6. CA 125 isn’t always reliable after all. Being tired out - which your body must be even though you have rested - might make hope harder, but it will come back. And perhaps you will be able to put the CA 125 to the side of your mind for now and look at it again when you have your scan in July.
I hope in the meantime that you find the chemo side effects not too rubbish and feel well enough to have some lovely times to take your mind off all the uncertainty. With sympathy,
I know it’s different for us all. But I wanted to tell you that my oncologist told me that the CA125 can go up to begin with. This did happen to me! In fact it doubled, a scary thought! From around no 3/4 it came steadily down. Good luck xxx
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