Bad news - My platelets have risen by only 20 so even though in the right direction they are still too low for chemo this week. Good news - The hospital is sending me an appointment for next Tuesday and I don't need someone else's blood.
This last two doses are taking a hell-ova-time to get done. I had another CA125 last week because, as some of you know, I was at an all time low and nearly did something very silly. My GP agreed that a CA125 may help to brighten my demeanour, as well as the shed loads of anti-depressants he gave me, which are still languishing in the cupboard by the way. The marker has dropped by only 7.5 in three weeks but as I only managed one chemo in those weeks I wasn't that upset about it. At least it's still going down, albeit very slowly. Now at 125.
Happy & Healthy New Year. I think those words mean more to us than anything else. I shall not be sorry to see 2017 go. It's been the crappiest year ever for hubby and me. Every new year's day he says, "This year is going to be a good one!". If he opens his mouth to speak on 1st Jan then he'll find something pink, hard, with fingers and nails rammed into it.....
Bon chance everyone and thank you all for being there for me - and each other.
Big Love to everyone.
Kryssy xxxx
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Kryssy
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You're on the right path, on the way up. I've been thinking of you and really hope that you and your family have a happier 2018. It's something we all wish for each other.
The days are getting lighter and our moods will get brighter with it. Let's hope the sun shines for us all.
Thank you Vicki. Do you think I could get a bit of remission with a CA in the hundreds? I know Lily-Anne did, but can I even hope? I guess chemo stops when it stops but I feel as if I want to carry on until the CA goes way down. Despite the blood, I'm not getting side effects. I can stay awake from early morning until late with rarely the need to nap. Fast heart rate and get breathless easily but I am quite unfit now after spending months on my derriere. Have my heart checked regularly and it's fine. It's the chemo and will recover.
I do hope that your recent good news continues. Everything crossed for you and of course all my sisters.
As for remission, who knows? But there are certainly ladies here who have been NED despite an above ‘normal’ CA125 at the end of treatment. Some levels are naturally higher, but we don’t ever know what our ‘normal’ is until we are diagnosed... everything certainly seems to be heading in the right direction for you, so fingers crossed you get to NED or stable for a good long time. There are women on the OC UK Facebook page who were stable and on watch and wait for 18-24months before needing more treatment!
I feel exactly the same wanting to carry on treatment until CA is more normal, and worrying that it might start to creep up now I am not being zapped weekly. I too can stay awake all day from 4 /5 am to 11 ish and at the moment feel I have super powers of energy and stamina ( mind you on going lower dosage daily steroids help here). On a mission to continue the house decoration and refurbishment with hall stairs and landing next then seriously thinking new kitchen, cashing in the pensioner bonds which mature next month to fund 😆.
Then I HAVE to stay alive to enjoy and use, that's my theory anyway...
Morning Janet. Do you think we are weird to be wanting to stay on the chemo? If I had my way I'd be having a CA test every other day.
Are you on the steroids by choice or by order? I take them for two days only straight after chemo and was told no more than that. I would certainly like to be more physical but my fast heart rate means I get very breathless just walking across the room or loading the washing machine. Going for a proper walk is out of the question right now.
All your plans sound wonderful. We would like to sell the house and rent somewhere smaller and spend the children's inheritance. They approve! There are still many things on my bucket list. A trip to Australia is one. Having dolphins"fly" over my head is another. Like you we have things ongoing to finish in the house before I am happy for it to go on the market. With neither of us getting younger and now me out of commission it's a slow process.
Today I have decided to get the Kirby out. Whether I actually use it remains to be seen........
You make me laugh with the whole fist thing,but not at how sad you are.
I had a crappy 2014, know where you are coming from,but proud you have left the shed load of anti depressants in the cupboard, having said that, they may help? In the short term.
I never went on them, but had very dark days, even though I am well, there are lots of facets to this disease and even when you are NED it messes with your head.
You are going in the right direction and when you are well enough to get back on the chemo wagon, I'm sure you will see better results,
I just wish you well love and really hope 2018 is better for you,please don't aim that fist in my direction!🤐☹️😘Xx
Sorry to hear the bad news part Kryssy, but I'm glad about the good news! I'll keep my fingers crossed everything goes according to plan. Hope hubby thinks of something else suitable to say when the clock strikes! 😜Christina x
It’s good the CA-125 is still dropping even without Chemo. It maybe that you are now stable, which you can stay for years. The scan will ultimately show. But keep on with the paw-paw fruit for the plaquettes. Has your tea arrived from Sri Lanka?
Wishing you and your family a healthy new year, too.
Lol Kryssy you comment about your husbands annual comment and yr possible reaction made me smile, a smile I needed, thank you! Sorry to hear you couldnt have yr chemo but at least platelets moving in right direction xx take care. Kathy xx
Hi Kryssy, Like you I'm waiting for my platelets to go up I'm of chemo for January to have some major dental work so need for the platelets to go up in the next 2 weeks, becourse I'm booked for chemo on the 5th February
I think it is good news your platelets are going in the right direction and also I know you would like to see your 125c come down faster but going down is a good sign.
There are ladies with 125c count near the 100s that are stable and this is a good sign also.
I'm going to say I hope 2018 is a good year I'm too far away for you to give me a mouth full of fist.
Kryssy your posts are a tonic in the sense that the style in which you write is great, but the message is not always a happy one. Small wonder with what is on the worry trolley - my CA125 only went below 100 in the last few weeks of this year, and before then it was 151 at its lowest point. I had more than half the year chemo free and the last chemo weeks brought it below 100. I think I'm one of those who don't get below this tyrant number 35 and I've accepted it. My last chemo finished end Nov and I'm ok. I hope your platelets go up and up (as well as papaya, pomegranate, chicken and turkey are platelet building foods) and you get these final chemos under your belt. All the best to you and your family for the New Year.
Bonne chance and more importantly bonne sante Kryssy.
It’s good your CA125 has moved in the right direction even though you’ve not had the chemo and the plaquettes are up so something’s going right. What’s a normal CA125? There are parameters the medical folk use as a guideline but yours may normally be raised and I don’t know about you but I didn’t even know I had such a reading until I was diagnosed 🤔.
I think when you had your wobble you had probably got to rock bottom and now you’re on the way back, it takes lots and lots of little steps and your sense of humour is amazing. My eldest son had a very similar rock bottom earlier this year but he’s now getting back on track, he needed the drugs to help, you’ve done brilliantly without the drugs so keep that up if you possibly can and you have them still as a safety net.
I hope 2018 will be a much better year for you and all your family than 2017 has been and that hubby doesn’t find himself with a knuckle butty anytime soon.
Love and hugs winging their way across the channel lovely ❤️Xx Jane
Thank you Jane. I've just been to see a friend for a coffee and a blether and 4 hours later I'm back. It did me good and we had a few laugh out loud moments as well as some tears. I told her where I was at last week and she was so lovely about it. I feel a bit ashamed now. But, not a lot!!
My old self returns bit by bit daily. Today the sun is shining and it doesn't feel so cold. I wish I could be working in the garden but hopefully it will come one day.
Kryssy--just want to chime in that I love your posts and your writing and through some difficult and challenging times I always see your sense of humor which is so important when feeling stressed. Yay on the CA125. Down is good! Slowly but as you say, you skipped a couple and it still went down. That would help me worry less if told I have to skip a couple. Platelets behave strangely at times--they may hardly move for two or three blood tests for me, then they go into "normal" range, then back down (sometimes when NOT having chemo)---I always go right to that number when I get my blood work results.
Here IS to a better 2018 for you and give hubby a break if he does open his mouth. Sounds like he is with you all the way--(give him hints as to what would be nice to hear!)
That's a good idea Judy and thank you. Maybe he'll say something like, "I'm buying you a new car". That would be nice. Hardly likely to happen, but it would be nice. I tell you what though, next year can't be any worse than this year that's for sure.
I will log on just after your midnight to hear what he does say. Maybe you could float the idea of a holiday in a tropical paradise and pick a suitcase full of papaya leaves and freeze them as soon as you get back!
glad to hear the better news Kryssy....don't think we ever really know what's going on.... blood problems are a nightmare but my oncologist seems to go more on how you feel. Has led to me probably doing too much whilst still anaemic but keep thinking ' I need to get it done'! Do hope 2018 is better for you...when you read of others who have had many more Christmases than expected, it gives me and I hope others, positive vibes. I had many blood transfusions then suddenly my blood appears to have got the message....lets hope its the same for you! Much love Chris xxx
You are an inspiration - I've just read all your replies and they are all so positive. It has taken my mind off my horrendously high CA125 count for a while at least. Starting my 4th cycle of chemo next week so the next leg of my journey begins. Keep those positive thoughts coming!
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